I hear it all the time: only another caregiver can understand. I asked members of our community for some of the things they wished people who’ve never been a caregiver could understand about the experience.
Omg…people have NO idea what it’s like to be a caregiver unless you have been one. Your life is not your own, it revolves around the person you are caring for and you are darn lucky if your loved one is in decent health…my mother is wheelchair bound and had such bad dementia that most days she didn’t even know me (she thought I was her sister) then the times she was so mean to me…many times I cried in secrecy, and tell myself to shake it off, cause she didn’t know what she was saying…no one has a clue…God bless the caregiver! – Marcia
That I can complain, be depressed, hate my life sometimes but that doesn’t mean I don’t want to still care for the person I care for. I just need to vent and sadly…be told it’s ok. – Jackie
The feeling that you must always smile and never complain is so stifling. It feels that if you complain you’re inadequate or wanting to give up, which is never the case at all. – Frances
That it sucks the life out of you even though you’ve chosen to do it, and that you just need a break. – Jeannine
I wish people understood that when I complained, I needed to vent, not be told to put my mom in a nursing home. No regrets. A hard job. – Karen
That it is easy for you to sit outside and judge…for you to tell me what I am doing wrong and yet you won’t step up and put yourself in my shoes.
My sister and I care for our mom. Our father passed away so we moved in with her (middle stages of Alzheimer’s)…our brother LOVES to tell us what we are doing wrong…he is on a pedestal with our mother when he shows up maybe once a month to spend an hour with her. Ugh!
We have only been dealing with it for about 4 years but she has become very petulant and demanding…makes having a life so hard. And then having a brother swoop in and “save the day” just infuriates me! He has no idea what our day-to-day life is like.
I have a 15 year old that has had to give up so much. We sold our house, got rid of all of our personal stuff to live in what now feels like a prison. So coming in and telling me what I am doing wrong when you get to go home to “normal” and to your own personal items…not sitting well at all! – Angela
when i’m doing the best that I can, telling me to do something unneeded isn’t helping the person. If you lifted a finger sometime to help THAT is how you help. Im not a slave who wants 3rd parties telling me what to do, Im a person who cares and helps because I want to, not because I have to. And It’s not my Job to help relatives who don’t need help. Im not a dormant or someone to use for your benefit. Im actually just nice. – Eric
Just because your loved one isn’t confined to a bed doesn’t mean you aren’t caregiving. The never ending appointments, the emotional roller coaster, the constant battle with insurance and Medicare, the incessant barrage of family members and well meaning friends telling you how you need to handle things. It is suffocating. Everything changes. Everything. Your life is not your own. It revolves around the sick loved one 24-7, and NO ONE GETS IT! – Kim
There’s more to it than the actual work. It involves knowing someone will never return to who they once were. And the energy you expend doing for others takes away from things you could be doing for yourself. – Michaela
That it is SO much harder than you think it is unless you have done it you have NO IDEA. We need to vent because it is a mentally and physically exhausting 24/7 job even though we love the ones we care for, you constantly fight feelings of sadness, anger (anger at them getting old or anger at the illness, anger at God for doing this to them, not mad AT them but mad about the situation etc…) it is a constant emotional roller coaster.and everyone thinks that because you are doing it they don’t need to help at all. – Jennifer
Always being on high alert; the falls, the stress; juggling so many things to keep things together; can be so isolating! – Nina
That I have no reason to feel guilty because my Mom receives great care in the memory care unit/assisted living facility where she lives. We are involved in her life & ensure her care needs are met, and we realize that she gets more stimulation & social interaction than we could ever manage at home on our own.Mom receives such good care, yet there are still stressful times & things happen. The pain of watching her progress through dementia is still so hard. – Johnnie
Please stop telling us we are strong. I am not strong, I am dead dog tired of the physical, mental and spiritual toll. Stop telling me how strong our family is and pick up some of the load. And for crying out loud, visit these people if they cannot get out, make a phone call, send a card, drop off some potted flowers or a meal. These things help so much, Yes my house is a mess working full-time, with a teen who needs us too! Above all do not forget us. – Kelly
A general “if there’s anything you need, let me know” is not helpful. Offer me specific, practical assistance (e.g. I made some muffins, can I drop some off later? When’s your next respite scheduled? If you don’t have plans, maybe we can go out for coffee? Would you like some company when you run errands tomorrow?) I’ll probably say yes to one or more. Putting the onus on me to figure out what to ask for and then call you up to ask, almost certainly guarantees I won’t. It’s too much work to get and receive this passive form of help. You think you mean well making this kind of offer. It’s hard to receive it In that spirit, it leaves me doing more work to help you feel better. Try harder, please. Same applies post-caring, when I’m grieving the death of my loved one. – Alison
It can be very isolating and a phone call or text would be nice. Or come visit. Just because I can’t go out doesn’t mean We don’t want company. “If you don’t mind the mess, we don’t mind the company.” – Carmen
That they have no clue just how strong, yet tired, we are. When you are in these “trenches” someone’s help doing even the dishes is a MAJOR deal to us. – Pam
Friends say “call me when you find the time,” and then get angry because I haven’t stayed connected! Actually insulted because I didn’t ‘need’ them. And how many “let me know if you need anything”‘s have I heard?!
I’ve also ‘learned’ that I need to find a new church, a whole list of books I should read, to drop a few pounds to feel better, and one of my favorites is I need to ‘buck-up.’ I’ve learned that God doesn’t like a whiner, that chronic stress kills, that the ketogenic diet is what I should be eating and that if I don’t accept invitations to the homes of others, then I don’t really need a break.
And did you know that others come to visit me and expect a clean house, clean sheets, meals and a good mood? But they came to ‘support’ me. Even a support group required a covered dish! I wanted to know if anything needed to be in it.
I have been caregiving my mom with Alz for 6yrs, in my home and yes, it takes a toll on my marriage. (I’m always asked.) So where are our theater tickets and someone to stay with mom?
It’s actually been less stressful w/o unhelpful friends and family. They usually mean I will be expected to caregive them as well! – Wendy
That caregiving is my full-time responsibility. Just because I do not work outside of my home, does not mean I “do nothing”. Being a caregiver is more challenging than any job I’ve ever had. I may not be building a career portfolio, but my work is changing lives. Including mine. – Mary
Many of us are working 24/7, with NO holidays or vacations. That INCLUDES our families. My poor daughter has grown up not knowing what an “family vacation” is for the most part! (She’s now 22!) We feel guilt for all that our families have and ARE sacrificing so that WE can do the right thing and take care of the ones we love! – Jeannette
Unless you’re a caregiver, non-caregivers doesn’t understand that I honestly am “on call ” 24/7/365! Even trying to have 90sec for toilet or 10min shower time! It’s hard to have an uninterrupted 3min phone call! Providing proper dietary meals to a picky eater on a 5 meal a day w/2 snacks & adequate liquids! – Regina
The complexity of caregiving. Along with what all you have posted. Sleep is a luxury. Stress is the glue that holds you together. You are on your own when you decide to care for an individual. I’m currently caring for my mother and I took care of my father 20 years ago. You learn to accept the aspects of the caregiving life. In my case, no one will truly help in a way that is beneficial. You make best with what you got and roll with it. – Tonya
How awful you feel all the time because you can’t turn back time for the cared for and the hopelessness of it. The helplessness you feel day after day. It takes a cold heartless person to keep their sanity while caring. I’m losing mine! Oh and those once every two year calls from my siblings saying just let me know mother I can come and get you anytime no strings attached as if I’m the devil. She can’t walk, do laundry, manage meds, make meals, remember if she ate, wears a diaper and is confined to bed. Here at home there is room for her caregiver me. They have no idea that an aide has to come in daily to bathe her. Sheets are a daily wash. They don’t visit. She is in hospital bed they have no idea. At this point i have routine and it doesn’t include entertaining company. – Bridget
The doctors and nurses and other professionals do a pretty great job, but I wish they understood that we caregivers need them to talk to each other and be on the same page with a care plan, especially when being discharged from a hospital or nursing home Rehab. It’s very frustrating when one doesn’t know what the other is doing or wants done.
As far as friends I know they don’t always get it…after almost 20 years of caregiving. Unless they get thrown into a caregiving scenario of one of their own loved ones, they just don’t realize what all goes on.
Family…we have been fortunate to have family that help in any way they can. Still, there are many many hours and days of isolation. They are all working and going to school, etc.
I reach out as much as possible with text, Facebook, and phone calls when possible. – Theresa
That it’s hard to actually get out of the house. I am 26 and a newlywed and I don’t spend every night with my husband. I have been doing this since I was 20 and it’s so hard at times.
People still see me as a 20 year old. I have always acted older than I am. I had to grow up quick when I was young. But they always tell me what to do or what stupid tiny thing I didn’t do that day and I’m always like ummmm she’s still here and you didn’t do a dang thing today to help that. I did, not you. And when I do finally see my husband and God forbid we go to the grocery store and take to long I have to hear about it. It’s hard for me to be around my friends and actually live!
But as most of you are saying, I am not complaining at all, I just wish people would see what I give up. A family member of mine always post what her husband cooks for her or them by the fireplace and I just get so mad bc they could be helping but never do but they always get the glory when they come around.
I haven’t spent a whole week with my husband since we got married and went on out honeymoon in October. And that was an act of Congress to get a week together. It’s funny how when you ask someone to stay with her (and I never have until the) people are no where to be found. Like you know it’s not doing me a favor you are helping your own mother and grandma out geez sorry about that but I’m sure you will find her when you need money. – Amanda
That we do the best we can to motivate them to get better, but they have to want to do things themselves, too. If they don’t want to do things, or go places, carees do have ability to say no and fight us, and for caregivers that can be stressful. We do need breaks away but we do still love them. – Melissa
That for a moment imagine themselves in our position before saying you have to be positive, you should take time for yourself without offering you the time to do it… I prefer that they understand that we don’t need advice, we need a helping hand, a little time for catching up with ourself and our other loved ones… that our relationships are being pulled apart by our caregiver duties…that if they can’t give me the time I need… I will appreciate they keep the advices and the you have to do this or that for themselves …! – Marylind
That I miss my family, but would not chose to not take care of my mom. That I too wish I was foot loose & had something left to give to others. – Linda
That you are putting your own needs last, and it’s really painful some days to keep doing that for so long. And that your dreams and plans were all put on hold or lost completely because now you have to devote all your money, energy and time to keeping another human alive. And it can be very lonely and isolating and not many people can relate or understand what you’re going through. – Liz
Its physically exhausting and my priorities are not yours: Don’t judge my sloppy housekeeping, delayed responses to phone / texts, declining to socialize, dirty car, un-styled hair, simple dressing, or yard that needs attention: my spouse who needs care COMES FIRST. – Michele
The realization that I spend my life helping someone live theirs. That when I’m not with them, I worry. It’s not just a job, I can’t just turn it off. – Tatiana
That no matter how many years we end up being caregivers…. We won’t get used to it. And we won’t find it getting any easier. Everyday is a challenge to our mental and physical state. But no matter how much we rant, we are sincerely and willingly doing it out of love. But we still need to rant sometimes, cos we ain’t saints. – Hooi
That we often feel very alone and afraid often. We miss the things we used to do and enjoy. We make everyday count even if we’re home doing nothing. Phone calls and “hi how are you” are so appreciated. And family, don’t avoid visiting us, just because you feel you don’t know what to say or do. We just enjoy the time with you.
We are in a new normal and these changes bring some sadness but closer together in understanding and in unconditional love. I as my Hubby’s caregiver often have waves of like grieving come over me. In this I know Gods hand is over us and all will be well.
I think as caregivers we do a lot of crying alone. My thoughts are with all of you in this walk in life. One day at a time is all I can do. – Marsha
So many things. How much I miss the man I married. That you can love and be devoted to someone and still need them to be in assisted living. Also that even though we’re not the sympathetic figure in the equation, we need our old friendships. We want to be included and remembered. We are lonely. – Debbi
How isolating it has been. The mental, physical and emotional toll of doing this for years.
How much I hated being asked how was he doing….when we had a long series of complications and facing a grim prognosis as we ran out of options. People just want to hear that “he’s doing much better, thanks for keeping us in your thoughts and prayers.”
How sad I was being unable to travel to visit my family out of state due to his condition. I have not seen my elderly grandparents or my father in over five years.
Devoting my life to caring for him, knowing we do not have a happy ending to look forward too. Knowing every moment was borrowed time. No one understands the way this affects my emotional state. – Morgan
Don’t tell me that everything is going to be OK. Cause it’s not. There’s only one outcome. And if you say you want to help then do so. Don’t expect the caregiver to ask for help, because some people don’t want to burden others with what they are going through. And also don’t tell me what I should or shouldn’t be doing when the outsiders have no idea what or how to handle specific things. Did I want to put myself in this situation? No! Am I in this situation? Yes! Because I care. He’s my dad. And I will do whatever it takes to help him. Is it mind boggling? Yes. Does it take its toll on me? Yes! Do I need a break? Yes! Does this whole situation suck? Yes!! – Tara
It’s mentally exhausting, there’s so much more than just giving physical care, I need to complain as well. It’s not a job I can walk away from. It’s 24 hours a day, anytime of day or night and inconsistent times. That I need help but won’t ask. That you shouldn’t judge me or what I do because you really don’t know unless you are in my shoes. – Elizabeth
People always ask how he is doing but never ask how I am. Everyone is completely oblivious about the fact that my entire life revolves around running the business to support us, managing his heath condition (5x a week home hemo dialysis treatments, drawing, shipping analyzing labs, coordinating doctor appointments, planning, shopping for and preparing all renal appropriate meals). I am collateral damage, but without my efforts he would not thrive how he is. His life is not defined by his disease but mine certainly is! – Corlyn
You can read more responses here and add your comments below.
How do you know you’re a caregiver? It’s tricky to decide — how many hours? What sorts of tasks? What about the relationship?
My answer is that you’re a caregiver when it’s changed you forever.
So, how has caregiving changed who you are and how you view the world?
I have always been a caretaker by nature. Since my teenage years I was always taking care of or looking after someone rather it be a family member or a friend.
As an adult I have spent 20 years in the health care industry. I started out at a nursing home, a CNA for a couple of year’s, then worked as a medical assistant for a decade+ and currently a caretaker to my husband about 2 years now. I have a very big heart and am an extremely emotional person. The first thing they tell you in health care is not to get attached. That’s easier said than done especially when it’s a loved one.
Caretaking has changed me dramatically. Hate the disease, not the inflicted! That’s also easier said than done. I’ve been with my soulmate and best friend for 8 years now and have been married 4 of those. We had the relationship that little girls dream about. We didn’t have to work at anything. We never said an ugly or cross word to each other for 5 years. For 2 years we was literally together 365-24/7 and loved it, no one could get us apart from each other.
That was until October 2014 when my husband would be diagnosed as an insulin dependent diabetic and then comes Valentine’s day 2015, john had his 1st psychotic break and was diagnosed as a schizophrenic and the life we knew was over. These past two years for me have been the saddest, most painful, loneliest, heartbreaking and the angriest year’s of my life.
After getting over the initial shock of hearing the most hateful things come from my husband came the guilt. I felt like I should have seen the signs, I could have gotten him help early on.
After that anger set in and hasn’t left and now I am starting to feel resentment. Until I found the caregivers space I was all alone with this for two very long years. His family don’t want to deal with him, it’s easier to dismiss and stay away than it is to be there in the face of a brain disease. So they have been absent.
My family has since quit talking to me because I chose to stay and be the wife I feel that God intended and take care of my husband who needed me. I don’t get a break, no normal conversation. I’m not even a wife anymore I am a caretaker. I am to my
breaking point and I don’t know what to do.
I have become this mean and hateful person because of this disease and all that it’s caused with my husband and his behavior’s. Schizophrenia is as ugly as cancer with no cure and no real help.
I think we start out thinking we won’t be changed at all, that this is another of life’s sad, hard times, they pass, we bounce back. That has not been the case with me.
I’m 6 yrs in as a caregiver for my mom with Alzheimer’s disease. She has lived mostly in my home and I’ve been mostly in charge of not only her caregiving, but her business needs that always pop up and have to be addressed. It’s been a big job. I’m also fully in charge of her estate. I will never be in the latter position again, God willing!
I’ve changed in many ways.
I’ve learned that I can handle more than I thought I could. I’ve also learned I can burn out more than I thought I could. The new me has learned that I count, something I thought was selfish and unmerciful before. Not only do I count, I’m not the family’s default. We EACH have strengths and weaknesses, we EACH can participate and cooperate within the recognition of them in ourselves and each other.
I now have zero tolerance for BS. It’s the most straightforward way I know to say it. Manipulation and guilt are often employed by both family members and my mom. I’ve changed the way I deal with it. It is simply ignored and walked through as though it isn’t occurring. And it works, even with mom. When there’s no response, it shuts the practice down, often leaving them reviewing what just happened and I get a much needed break!
I hope, and believe, that I won’t take peace and order and laughter and lightness and freedom for granted as I once did.
I’ve learned that ‘in the moment’ is the very best place to live. There is so much there! My mom and I share moments out of necessity, but that necessity has taught me the value packed in the present moment. It brings life back into life, and we can be fully there for each other. She is still my mom, in the moment. It’s where the greatest love lives.
I’ve become stronger in many coping skills for rough spots in life in general. Laughter, focusing on another, gratitude, and empathy, the ability to stand in their shoes and understand, and the ability to step out of them before they cause calluses because they aren’t my shoes. But I love the gift of connection and even the huge sadness that standing in mom’s shoes does for me, and for mom. It feels wonderful to connect, which provides some ease because of sharing. And often, mom helps me with my hard places too, which in turn blesses her.
Changes have occurred and I know more are ahead, but this whole experience has humbled me and strengthened me. I am not responsible for the journey others must walk, nor are others for mine. At the same time, I can proactively walk alongside them and feel their heartache, or their joy in moments, laughter, celebration. Sharing.
My caregiving time has distilled me, is still distilling me. It has a way of separating things into beautiful and ugly, but w/o the ridiculous weight of all those “extras,” like guilt, self pity, horror, anxiety and depression.
I now can say I need help. I now can usually 🙂 let my yes be yes and my no be no. I now can admit my weaknesses and clearly see my failures, but for growth and not self flagellation. Caregiving levels the playing field. As confused and distorted as this disease presents itself, the very act of working within those unusual boundaries can bring clarity!
I do not enjoy depression, but it doesn’t have me like mom’s disease has her. I can make choices she no longer can.
My last mention is that I hope I never have to walk this path again because life is short and as invaluable as the gifts of memories with my mom have been, and they are priceless!, it has required me to set my own life on a shelf and the out of balance of that over the span of yrs is not only unhealthy, but destructive. I now recognize that truth, without guilt. It feels peaceful.
I did my best, I learned a lot, I changed. I’d like to believe, for the better. And I continue helping mom, I continue doing my best, and I continue to change. It seems impossible that when this season is done, I won’t be a very different person than before it began. By the Grace of God, and by His ability to turn pain and hardship around to goodness, I take heart. He’s got this, even when I don’t, so everything’s gonna be Ok.
I’m frustrated and angry all the time. I never get to go out alone for any amount of time because there is no one to cover for me and I can’t afford to pay anyone to stay with my husband.
I find I’m just not the old me, just a shadow of myself….putting a smile on my face when I don’t mean it.
I’ve lost all my independence. I feel lost & sad. I don’t seem to care about ‘me’ anymore. I’m an kinky child if 2 only children so not much support. I take care of my mother in her home. I had to leave mine & I miss my life. I feel as though I will die before my mother & I don’t even care.
I’m mad that we spend so much money keeping the elderly alive. My mom is negative and self absorbed. She thinks of me as a servant.
I don’t care what other people think of me anymore. I just want to do the best I can & be honest.
I have become a very angry, unpleasant person, filled with resentment.
Mom lives in another state and I had to give up everything (apartment, friends, job, etc.) and move back to become her full-time caregiver. She is very needy & doesn’t sleep on a regular schedule, which requires me to be available 24/7. This schedule does not allow me to have a regular job due to her constant requests.
I walk around mostly numb. However, I’ve found I’m a little more sensitive to other people’s pain than I used to be.
Caregiving has made me a better person. Despite a busy, action-packed schedule, I’m more patient than I used to be. The fact that both of us are alive and together is humbling.
Small things, like reading quietly in the same room, are experiences to treasure. It’s true—caregiving changed me forever—and I am more empathetic. I also understand challenges disabled people face.
In August my husband and I celebrated our 60th anniversary.
We have a 41 year old autistic daughter. Since birth we have been caregivers to an abnormal family life. We are changed in every way as we haven’t “fit” into the way of life of our friends and family. We didn’t ‘t fit as abnormal behaviors of our daughter caused us to be left out and to be given advice by those not understanding autism.
Blame has made us feel incompetent many times. We as parents cannot use reasoning with our child, you must continually try creative ways of dealing with abnormal behaviors. Often we have failed and the more we have tried we haven’t succeeded in having independence from “abnormal, abusive verbal and physical actions from a child we love and want so much to enjoy.
We are close to 70 now and extremely sad and depressed. We can’t enjoy the freedom of retirement as we are full time caregivers still spending our energy, our time and our resources.
Changed us??? Oh my how has caregiving NOT changed us. We have no idea of the people we would be without the burden of caretaking “abnormal” behaviors every day! Feeling sad, tired and hopeless.
Depressed parents for 41+ years with no hope for positive change in our futures.
You know you’re a caregiver when the spouse who you called and treated as a partner becomes a patient to you, and seldom a partner. It thus changes you from someone who had a companion to someone who is lonely.
Caregiving has changed when I go to bed, how I cook, when I go to shop, When I take a bath, and how I sleep. Taking care of my stepdad 24/7 of 365 days a year.
How I relate to him when he wants to eat, sleep, and how he dress. Making sure he take his medication (swallow his pills). I know it is difficult for him to relate to anyone including his son. He will not go to his sons house to stay without me. I don’t get much sleep because he walks in his sleep, he paces all day if he has to go to the bathroom. It’s hard to convince him to use the toilet, he wears pull-ups just to help control his need to go.
I don’t get out with my girl friends anymore, they don’t call me to see if I want to get away. I fell so alone in this great big world. HELP!!!!
The most common term for discussing the difficulties that come with supporting a loved one through a health crisis, long-term illness, or disability is “caregiver burden.” While it’s a succinct way to sum up the challenges of caregiving, of which there are many, it also sounds a little bit like the person you’re caring for is a burden.
Here’s what our community members had to say:
A burden is defined as a heavy load… care giving IS a heavy load especially when doing it alone. That does not mean that you do not love the person or choose the role, but no matter The role of caregiver IS heavy and a tough one to carry alone. – Janie
It’s a burden. It’s a gift. It’s an education. It’s growing as a person. It’s love. It’s like many things in life – complicated. It’s all the harder because these are my children. They are healthy other than their disabilities. They will most likely outlive me. I will never be free of this responsibility. – Naomi
It is love, responsibility, and heartbreaking sometimes but it has to be done and for my husband I am the one doing it. So many different emotions wrapped up in care giving, no day is the same. – Jeannie
Its a sacrifice…without doubt. You simply cant do the things you used to. Loss of career, hobbies and social life is hard. Its also an adventure. A journey into unknown territory. What makes it a burden is bureaucratic systems that are meant to support but cause additional and unnecessary stress. – Leslee
No there’s not another better word for it. Burden is authentic and a natural description. It won’t help anything to employ euphemisms.
It is also NECESSARY to call it what it is for legislation sake. You cannot solve a problem if you don’t state the problem accurately in the first place. I refuse to minimize and pretty up what this lifestyle is all about. Its the best word because it’s the truth. – Kim
It’s a no win situation. Even when you can barely muster your last ounce of willpower and energy to keep going, complaining is not an option. Even the word games in this post–can we say burden without sounding like ogres?–no. It carries a stigma.
Honestly expressing how difficult it is implies we’re not loving enough, not understanding enough, not sensitive to the plight of the loved one, who’s really suffering. So there’s no outlet.
While the rest of the world has the luxury of indulging each and every inconvenience from a splinter to a missed hair appointment we have to keep quiet about cleaning up feces, not sleeping for days on end, giving up our hopes and dreams, exhausting our financial, physical and emotional resources so it doesn’t sound like we see our loved one as a “burden.”
Caregivers are the least understood and most taken advantage of group there is. And yet we persevere. – Sylvia
Not a burden…just exhausting! I keep in mind I hope to be as blessed to have someone care for me if needed in the future. – Kimberly
I think it is the frustration of trying so hard to make sure that our LO has what they need & want and then that’s still not good enough. That is when it starts to become s burden to me. – Gabrielle
What if you are a caregiver to someone who was always difficult and mean AND abusive? To me it IS a burden but I have accepted it and am doing my best. – Patricia
This is what I think makes caregiving so hard. We are often forced by circumstances into becoming caregivers to parents who were (and are) emotionally or physically abusive. Most people don’t understand the moral dilemma of this and simply say that taking care of parents is our job. – Jessica
We need to get back to a better understanding of the definition of burden as something that is carried. It also means the capacity of something (or someone) for carrying a load. Yes, it’s a burden, and should be brought out of the realm of shame, or the expected duty of a family, and into supervised, standardized, legislated, concrete support of caregivers. – Jean
My mom refuses to allow a “stranger” to care for her, so it’s solely been me… she’s 100% a burden to me. – Tammy
I would never say, “it’s a burden” when it’s something you feel deeply in your heart to do. It’s a loving choice! But what I think is over looked is caregiver burnout. The no human can do it all by themselves and go 24/7 and not burnout. You try to the best of your ability to take care of yourself as best you can, but sometimes the demands become overwhelming and relief and respite is desperately needed. The physical, Mental, and emotional toll can lead to death in a caregiver even before those that they are caring for, None of wants to be a burden on others, it’s not in our nature, but support is desperately needed. – Johnna
Yes. It’s a burden. That’s just a fact. Lean into it and accept it all the way around. Burden does not equate to resentment and negativity. Carrying a baby to term is a burden and a joy. This is a burden and life. Just live it best you can. – Kim
I have been a long-term caregiver and it is a burden, but one I was able and glad to bear. There were better days than others, humorous times, sweet times, very difficult times, but the total of the experiences made me a better person. It also made me a very tired person emotionally and physically…that’s the “is” of caregivers. I am glad I had the opportunity to care for my mom at home til she passed. – Penny
Was it a burden for my mother when I was a sickly child in early childhood and she took care of me? No it wasn’t. Therefore, the four years that I dedicated to caring for her through her struggle with dementia were not a burden for me. Those four years “broke” me emotionally, mentally and physically but I wish to God she was still with me. – Cary
Yes. It truly can be a burden and challenging, regardless of how we re-frame it. There isn’t anything wrong with admitting it either – sometimes doing so can make it easier to cope. – Kapok
I wouldn’t not do it and I’ve never regretted any of it, but the toll it took — emotionally, physically, and financially — I may never recover from. – Jessica
It’s hard. The hardest thing I’ve ever lived through in my 62 years. I wouldn’t have had it any other way but I look back and have no idea how I got through it. – Valarie
It was a privilege to be a caregiver for my late husband. He had early onset Alzheimer’s disease. I feel fortunate in that I was able to honor my wedding vows in ways that a lot of people never have the chance to do. In sickness and in health. We lost everything. Was it stressful? Was I exhausted? Would I do it again? In a heartbeat! – Lauren
It is an extremely complicated, very difficult, and most exhausting task for me. I care for my dad alone. I love him very much, he has been a fantastic dad, my best friend. I feel it is the least I can do because he has done it for me, sacrificed so much. It is not a burden for me, but I understand depending on situations and relationships, it is a burden for others – I can respect that. – Eleni
It wasn’t a burden. It was however EXTREMELY difficult not only to take care of two of my parents for so long but to watch them suffer. I did everything I could to give them quality of life for as long as I could, at the suffering of my own health. But you know eventually the end comes and watching them suffer was more than I could bare. I’m glad they are both at peace now, even though I miss them so much sometimes I can’t stand it. But never a burden. I chose it. – Lacey
Having been a caregiver in one capacity or another for family members most of my life, yes, I think it’s a burden AND it’s also an incredible privilege.
As a single woman, it’s significantly negatively impacted my career and earning power, and thus my ability to save money for retirement. That terrifies me because I don’t have anyone I can turn to care for me for free. I’ll have to pay for caregivers. I don’t have children who can help support me or let me live with them. I’ll have to pay for it. Because as a society we don’t value caregiving for family members.
And then there’s the physical and emotional toll. No one likes to talk about it or hear about it, but it exists. – Jessica
I’ve always thought of it as like being the Chosen Hero. I had a duty, not a privilege, but not a burden. I was the chosen one, the hero that would be there for my brother when the world no longer wanted him.
I thought it was a good, optimistic thing. But sometimes the journey becomes really long, and the battles become really difficult. You realize that stepping up and agreeing to a prophecy can weigh heavy on you, even when you know you may just be the only one who can do it. That trying to fill the expectations of you, expectations that everyone, including yourself, have placed on you, can sometimes be impossible. And sometimes, you will want to quit, and not even know what it is that you want to quit from.
Am I tired of school? Tired of being bullied? Tired of stress at home? Tired of being responsible? Tired of being lonely? You don’t know. You just know that you’re tired. And that you’re tired a lot more than you thought you would be. – Dominique
You are not and don’t let anyone make you feel [that you’re a terrible person for being overwhelmed by caregiving]. Caregiver fatality and, worse yet, suicide is the taboo topic never covered. We live in a shaming society and that is so wrong.
I know all about being made to feel I’m a horrible person, but I have a choice, victim or advocate. I choose advocate because there are more people feeling like this who are afraid to admit it. – Jaqueline
If you’re terrible than I’m terrible too. Burdens are things we shoulder. It’s not whether you think something is a burden or not a burden, what counts is how you handle the burden. It’s really not about what we think or feel, but what we Do. – Karena
We talk a lot about how fulfilling it can be to support a loved on, but we also discuss how difficult caregiving can be. Is caregiving something we’re doing out of a sense of obligation and duty, out of love for our caree, or a mix of both?
Caregiving is an obligation
Caregiving is an obligation for me. My daughter has a brain injury due to her own drug use. She’s hurtful and emotionally and mentally abusive to me and her kids that I’m also caring for. There are many days that I truly do hate her for the situation she’s put us in. My grandson will be 18 in two weeks and he’s moving out because of her, his mother. I don’t blame him at all. – DA
It was an obligation. Glad it is over now. Caring means you put your own life on hold, or try to lead two lives (and be expected to). It is not sustainable and leads to resentment. – VJ
Obligation in my case. If I don’t step up things don’t get done. It is especially hard for me because I have felt trapped throughout my life. It has never been about me. I resent that. I took care of my ex with cancer, then my daughter was diagnosed with autism and now mom has dementia. I have had to leave everything I worked so hard for because my brother can’t be bothered. – IN
I want to say both but more and more it is just obligation.
My mom makes everything so difficult with her self centered, controlling, hateful nasty attitude. Everything is a a demand to be done right now and to be done her way. My own adult children tell me it is time to tell her she has to go to a nursing home and leave her. – TK
Caregiving is an act of love
LOVE!!!! 18 years… my husband was shot in the head twice, he cannot walk, talk and eats through a g-tube. Definitely LOVE. Before his BI he loved me like nobody in this whole world has. – JJ
It’s an honor and a privilege to take care of my wounded veteran 29 yr old beautiful daughter. She is my hero. – KP
I take care of my husband because I dearly love him. Yes I do get tired; I do miss out on some things I’d like to do. Yet I don’t resent a minute of caring for him. My daughter stays with him one day a week and I go have lunch with a friend, get a pedi or just ramble around and I’m always happy to get home to him. – RH
It is a GIFT to give back to our loved ones. OH, it is not an easy journey but once you understand “they are NOT giving you a difficult time, they are having a difficult time” You begin to find the humor and share their journey with the love and respect your loved one deserves. At times, when I was so tired, frightened and feeling I was doing everything wrong. my Mom would SMILE at me, touch my hand and fill my heart with such Love. We took the journey together and shared so many wonderful adventures, long talks and much laughter and yes, tears too. I will miss her always and thankful for our special times helping each other. Life is a Beautiful Journey. – SM
Love, absolutely!! I am so blessed that I’ve been able to bring our son into our home, after some terrible occurrences at a nursing home, and to be able to assist and encourage him to reach the amazing ability level he’s reached!!! In those very brief and fleeting moments when I feel like ‘quitting’, my husband is always here to give me the little break I need. – VM
After 14 years, there’s as much love as there ever was, but there are days when I miss dreadfully the freedom and light-heartedness of my previous self. Filial piety is no easy thing. – CB
My son is only 11 and most likely will never speak or be independent. Right now it is love. But how will I feel in twenty years? Looking for guidance and advice from folks who have been doing this for a long time. – PC
LOVE!!!! When I start to feel lonely & sad for not being able to have or experience what my friends have, I get selfish & then it kinda feels like sort of an obligation. I’m the youngest & stayed behind to take care of Mom & Dad. I gave up grad school at USC, my career, getting married & having children. – RB
Caregiving is both an act of love and an obligation
Obviously both. And when I’m so tired a burden. But love wins out. Such a rollercoaster of emotion for me. – DR
It started out as love. My dad had Alzheimer’s late stage and my mom was starting to develop it. So I moved them into my house After 10 very long years my Dad passed and now it’s just my mom. I am exhausted beyond belief with no end in sight. I love my mom but it has quickly become an obligation. – NN
In the beginning, it was all love. After 12 years of anxiety and stress, it usually feels more like an obligation. – KF
An obligation brought on by love….my husband developed a brain disease that’s deteriorating his brain. I always had promised him I would take care of him as long as I could. I struggle everyday out of love and then those days I don’t know if I can continue. He has had strokes, has seizures, has developed kidney disease, vascular disease, lung disease and now our current dilemma of skin deteriorating on his bottom. Most of the time I want to give up but then I look at him and ask myself if the roles were reversed would he? I can admit, even with the help of a home aid and nursing visits, I am tired. – TM
I love caring for people but I’m also getting burnt out. I think if I was caring for a loved one it would be different. I am at a place where I don’t want to do this anymore. – AJ
Both, as much as I love him, it does feel a obligation sometimes especially when I can’t get any me time or am so tired i could scream. – KA
Mostly love, but sometimes obligation. I love my son (18 yrs, traumatic brain injury at birth caused by doctors). I have my days where it just feels like I’m on a treadmill, doing the same thing day in, day out. Being a caregiver is one of the hardest things I’ve ever done, but the rewards far out weigh the bad days. – GG
Both…But you are motivated by love even though you get tired of being judged so harshly by outsiders and family who truly don’t have a clue. They make it feel more like a burden and obligation. Many are just jealous and expect too much out of you for them which takes away from the one you are caring for and your own self care. – JD
Depends on the day and on the mood of the person you are caring for. It’s the hardest thing I have ever done. A child is one thing but an adult who is depressed and uses anger to mask is the hardest ever. – MR
Depends on time of day, what day of the week, how tired I am, how tired hubby is, if I’ve had respite…ideally I feel the love, in reality, it’s kind of brutal, watching the love of your life fade away, doing things for him he never would’ve wanted you doing. – PS
Mostly love, occasionally obligation but I asked for this. All those prayers asking for his life to be spared, asking for healing. I never asked that God take him home n release me from this journey. The next journey scares me more, the one where I learn to live without him. – VS
Both!!!! The hardest part of being a caregiver for me is watching my husbands health deteriorate. It’s also very hard not to get resentful for being put in the position of being a caregiver. Some days I feel like running away from the responsibility of it all. But somehow I hang in there and pray for strength to get through the next day., praying that it’s not as stressful as the day before. – RH
When I was caring for my Grandma, I loved her 100% of the time but she always made it feel like an obligation. Especially when she was verbally and mentally abusive. – PB
Both, for sure. As someone else said, it largely depends on the moment. When my sister is happy and being good, it’s pure love. Grumpy days feel like pure obligation. Though even then, love plays a role in order to dig up the patience needed to handle her. – AB
I’m starting to feel resentful because it taken away so much time from my son who is leaving for college in a few weeks and my husband who I have to leave at home as well . I love my Dad but he doesn’t appreciate the struggle it is …. but I’ll keep on doing it because he’s my dad and I promised my mother . – KB
Wow such a thought provoking question… my daughter is severely disabled and has major behaviors. Lots of people ask me when I will put her in a home and honestly I can’t even imagine her not in my life or my home… I know at times I grieve my life because I have absolutely no help and feel so isolated at times, but like I said I love her so much I can’t imagine her not being here. But I also feel as a mother it is my obligation… I definitely think sometimes it depends on the day and how exhausted I am feeling in the moment. I truly wish there was more support for parents that have none… my only option is out of home placement due to her behaviors. – JT
Both. I love my son but his behavior related to his TBI makes it a challenge some days. I never thought this was he would be spending his senior year in high school. – JN
Both….my mom passed away three years ago…I cared for her for over twenty years…she was sick n suffered with diabetes..kidney dialysis foot amputation etc….list just goes on and on…my dad passed seven years ago so that left me by myself to care for her..I loved her so much and miss her everyday..but wouldn’t want her back on this earth to suffer more…but also felt obligated to care for her because she cared for me and raised me…fed me changed me took care of me when I was sick..she didn’t abandoned me because she got tired or aggravated…she always was there for me…and there was no way I was there gonna abandon her either…so I felt both love and obligation…and id do it all again….❤ – VT
Both to me as well. As mom, I feel it is my obligation to take care of my son instead of allowing others to help. But at the same time I so love taking care of my son. Not many moms have their 21 year old kid at home and I have been so blessed that I can spend so much time with him!! – DA
Love that turned into obligation. Yes, the love is still there, however resentment has started to creep in. That is when I need to wake myself up, lean on our Father and realize that I know what I was getting into. I don’t blame him for all of this…just pray that things would be better so that I can be near my only son. I encourage everyone to look for the small blessings and never give up hope! – SA
Both. Although in many ways I feel it is my calling. My career was nursing, that was my passion. I was gifted with the opportunity to formally “RETIRE” from working with a full pension effective August 1, 2014. My mom was diagnosed with Double Pneumonia August 7, 2014. I struggled with being nurse and daughter until her passing from progressive decline this April 16, 2017. I am now caregiving my dad who has cognitive impairments. Although many challenges make each day a “new normal”. I find that my love for my family is what helps me to make wiser and healthier decisions. – KB
You want it to be love and being done out of the goodness of your heart — but it is difficult to dismiss the hateful things that are said to you. – BJ
Some responses have been edited for grammar and clarity. You can read the original responses here.
A few weeks ago we were talking about how we became caregivers on the Facebook page. I was surprised by how many professional caregivers said they didn’t have a choice in the matter, it just happened. I was also surprised by how many parents and spouses said they chose to be caregivers when there was an unexpected healthcare emergency.
The biggest thing that stood out for me was how many of the people in our community have both provided paid care for work and unpaid care to a friend or family member.
So, how did you become a caregiver? Did you have a choice in the matter, or was it something you just had to do?
At first I really want to work in the hospital. Since I was in primary then my secondary school, I made my decision to study nursing. Unfortunately, I got married when I was only sixteen.
I’ve been a good mother of seven. I went to school just to inquire some other details for my kids.
Its just so happened that I saw caregiving course. Really don’t have any ideas about it. So I enrolled the class for almost nine months. So excited to finish my class despite of all challenges, circumstances and even lack of transportation expenses.
I just gave my all just to get into the finishing line. And yes I did it!! Passed the exams!!
After a year one of my colleagues called and introduced me to her client (patient). Got my job!!
From 2009 up to present (my patient passed away 2012) they still kept me and they also allowed me to work. But I will still stay with them.
I started caregiving in 2008. I went to work for a company that cared for
folks with developmental disabilities. It is a rough field but managed
stay for a year and a half. I decided to leave there when I realized my own
physical capabilities. I was 57 at the time.Kathy
For me becoming a caregiver came with my profession which I chose, but I think I would become a caregiver anyway.
31 years ago I helped a lady I knew from a restaurant I worked at! Then after gaining much life experience and skill I decided to start my own company!
My mom’s first open heart surgery happened when I was 12yrs old. Became a caregiver then…. Became a live in caregiver for an elderly lady at 18. Going on 36 now and am currently on my 8th person don’t know that I’ll ever stop.
Going to see my Grandpa in a long term facility. Then I was trained as a CNA at the same facility. Then I was trained as a nurse at another facility. I found I really enjoyed working with the elderly. I loved to listen to their stories about when they were younger. When I go see my Oma, I still love to talk to the resident’s and hear their stories about when they were younger. I had to retire completely when I was 32 due to MS.
We know that an easy life doesn’t necessarily make for a good life. People who feel that their life has meaning tend to be more fulfilled overall, even if their life is incredibly challenging.
Different people are driven by different things. Here’s a quick quiz you can take to see what sort of things might be the most meaningful to you. Many people find having a sense of purpose, close community ties, and helping others gives their life meaning. Of course, sometimes caregiving can pull us away from the things we found most meaningful.
Do you find your role giving care meaningful? What makes you feel that way? Has your life become more or less meaningful since you’ve started providing care?
Any meaning or purpose derived from anything I do is always contextual and enhanced or depressed by the, sort of, ‘fluid’ biology of my ‘human-ness,’ if that makes any sense. Everything day is different, and meaning varies, even with repetitive tasks.
Perhaps a little too existential here, but – you asked
My life is immensely meaningful because my husband is disabled. Without my care, he would be in a nursing home. With my care, we are in a wheelchair-accessible townhome, which I built for us, and live independently. To conserve my own health, a paid caregiver comes each morning for two hours to get my husband up for the day. Our marriage is stronger than it has ever been. The fact that my husband is alive is a miracle. His aorta dissected in 2013 and he had three emergency operations. During the third one he suffered a spinal cord injury, and was told he would never walk again. Today, my husband is able to stand, stand and pivot, and walk the width of our townhome with the aid of a walker. We are grateful for every day, every hour, every moment we have together. In August we celebrate our 60th wedding anniversary. We are blessed.
Yes, I think caregiving gives me meaning. I am not always able to change the outcome, but caregiving is showing someone you are “with them in the trenches”.
Nothing. It is just one long slog.
Knowing no-one can care for my kids like me.
Sacrificing “self” for others. Expecting nothing in return from anyone. Knowing that you gave caring and compassion in desperate time of need. Just as Jesus would and has done.
Knowing that Mom can count on me for the best care. Yes, it’s sometimes frustrating and exhausting but she’s amazingly grateful so the love on both sides outweighs the bad days. ❤️
When people talk about overcoming disease or disability to live an incredible life, so often the caregivers are left out of the story.
Many caregivers don’t identify as caregivers — we’re so absorbed in the needs of whoever we’re caring for, we forget what it’s like to be us. We take our own work for granted sometimes.
What does it feel like to be you?
Exhausted. Learnt bucket loads of patience over past 8 years. Lonely. Really grateful for current medical schemes in Australia. Sad for those without same privilege.
I don’t think people want to feel the way i do.
To be me is to be sad, angry, depressed, lonely, irritable, short tempered, sometimes confrontational with strangers, cold hearted, withdrawn and just don’t care about anything and anyone.
This is only for this week. Never would’ve i thought that being a full time unpaid caregiver to my parents for over 21 yrs would be this hard.
How does it feel to be me? Wow, that’s a challenge. Most of the time, I really like myself. I like the fact that I don’t cringe in the face of adversity. I meet it head on. I believe firmly that there’s no such thing as a stupid question. I also believe in repeating my question to many people in order to get an understanding of the best course of action for my family and myself.
I have learned that taking care of myself is as vital as taking care of my loved ones. I have made conscious decisions in what I eat every day. I take the time to walk, often with music that makes me smile. That’s a very important thing too. Music must be able to make you smile. I avoid music that makes me frown. I see a counselor to take care of my mental health too. I am not afraid to admit this need.
I know without a doubt that I was blessed with a kind heart and do my best to be nice to others every day.
I’m a partial caregiver to my married son in Cal. I’m in Dallas. He’s post 2 liver transplants 17 yrs again at 16 yr, severe ulcerative colitis and depression with suicidal thoughts. His wife has trouble understanding so he calls me. I’m an RN also. I’ve flown out when he’s in depression crisis. It’s very frustrating because of distance and stubbornness. Feel helpless over phone.
I’m caregiver also to my 30yr old daughter who is 3 yr post third liver and kidney transplant. She shattered ankle over Xmas in car wreck had 3 surgeries and 4 admissions. That just added more stress. This daughter doesn’t work goes to school part time, too afraid to do too much alone, no friends, no social life and messy to boot. She gets SSI and still on our insurance which is blessing. But she’s my biggest headache. My other two younger daughters have been out on their own since college.
Then they diagnosed my husband last summer with possible dementia. He’s 64 and retest this summer. Been told it might just be him. God willing.
I had to quit work as home health RN because it was too much stress to caregiver at work and at home. I feel lost very alone and all I want to do is complain to people. I go to counselor, take anti depressants and anti anxiety pills. Sometimes I just want to scream or curl up in a ball and sleep. Have other health issues myself as we all seem to and I feel like my tolerance is slim.
No matter how much support I receive, I still walk this path alone. So I would say a general feeling of isolation is how it feels to be me.
I am exhausted, overwhelmed, and frustrated some days and some days are so very rewarding. I do it for love.
Before I became my disabled husband’s caregiver, I was my mother’s family caregiver (9 years), and my twin grandchildren’s caregiver and guardian (7 years). I am my disabled husband’s caregiver now (close to 4 years). From this experience, I learned that I need to keep doing what I love, and that is to write. So I’ve continued to make my writing career a priority. This decision led me to write four books for family caregivers. Another book, about raising grandchildren, is in production now. Writing makes me happy and when I’m happy, my husband is happy. He is my biggest fan and wants me to keep writing. I will admit, however, that two roles—caregiver and author—keep me jumping. Writing can be difficult because I’m constantly interrupted. Thankfully, I am a disciplined author and have good work habits. These work habits carry over to caregiving.
It’s an honor to be able to be my wife’s caregiver and I take pride in how I take care of her. I appreciate the kind words from family and friends about how well I do with my caring for me wife.
On the flip side though, I’m tired and I don’t know what my identity is anymore. I’m so wrapped up in her needs I admit that mine take a back seat, in fact they’re in the trunk. Please understand that I’m not bitter, she didn’t ask for MS.
I know that I should get some help, but in my mind who’s going to do it, and better yet who’s going to pay for it. So I’ll do what I always do and keep moving forward, I realize this is on me and for me to get the help I need. I just wish that we can go back before MS and stay there, when the most difficult thing to do was to figure out what to have for dinner. Thanks for letting me vent a little.
This is how it feels to be me.
I first became a caregiver in 2011. When I started I was in a size 10. Now I’m in a 14/16. Stress shows in my face and body. I look in the mirror and don’t even recognize this person. I was married and just became a divorced woman.
I have found out that I cannot depend on my siblings to help take care of our Mother. They have not stepped up at all. I feel angry and resentful. But I also feel strong because although it’s the hardest thing I’ve ever done and I’m doing it.
My Mother battles a horrible disease and it’s in my face everyday. My siblings have not seen one ounce. I know I’m doing the best I can and I know I’m helping my Mother that once helped me. You never know what you can do if you don’t try. And you do whatever it takes when it gets tough.
God has not abandoned me but people have. It is very isolated when caregiving and you are no longer “available ” to others the way they expect or want you to be. You will sacrifice much. And it’s hard to find time to take care of your own needs. But I’m working on that.
I plan to find time to go for a walk everyday. And to drink the water I need everyday. And lose the stress weight. Cortisol stress hormone please stop attacking me. I’m already battling LBD.
You’ve heard the term “caregiver burden”, right? It’s the stress and strain that comes with caring for someone who is ill, elderly, or disabled. Lots of people don’t really like it, since it can easily seem like the person you’re caring for is a burden.
I was thinking about this while reading the story of The Perfect Servant. She’s really honest about what a burden caregiving can be, but it’s also clear that the love her and her husband share is incredible. We don’t want the person we’re caring for to feel like they’re a burden or to further stigmatize their condition.
Is there a better term? How can we talk about the stress of caregiving without placing blame on the person we care for?
I am reaching a new level of care for Deb as she is incontinent of bowel and bladder to the point that she has lost all control. Her MS is putting her body thru some new changes. Her fatigue is such that a lift may now be getting close. My own ability to care for her as a 66 year old man is being called into question. I bring this up to address the word “burden”. Is it now a burden to care for a woman I have been married to for over 32 years, who has always given more to me than me to her and has been in a w/c for over 7 years and I am her nearly full time caregiver. To say it is not burdensome physically and emotionally is naïve and dishonest. However, this burden is filled with that intangible gift of love we have been given and I want to share and honor that with her.
It’s like I have been trying to instill in my son, there can’t be blame. It’s an awful word to start with, when you consider the meaning. Things happen, it’s called life. It’s called what God and Jesus hand to you and expect you to do right by. I firmly believe in both God and Jesus. God picks who we are, boy or girl, short or tall, autistic or not. Jesus gives us our heart and soul, and expects us to love unconditionally always.
My son didn’t ask to be autistic any more than my dad asked to suddenly grow weak and unable to take care of himself 100% of the time. I certainly did not ask to deal with chronic pain, PTSD, have my neck fused, and more. Blaming or saying someone is a burden disrespects God, Jesus, and the person who has become dependent on others in daily life.
I would encourage someone to seek counseling because it really helps. If not counseling, find that someone who would not mind being a sounding board. Not to give advice as much as there to listen to the struggles, the
fears, the joys and the frustrations of being a caregiver.
Most important of all, find that time for yourself. 15 minutes here, 15 minutes there. Read, listen to music, watch a favorite tv show, it doesn’t matter as long as you are giving yourself time to focus on something other than the person you are caring for. Balance is key to not feeling the need to use the word blame.
How about “moral responsibility”? Caregiving applies to the circumstance but the heavy feeling of a burden comes from outside the role of a caregiver. These emotions stem from a desire to believe in hope for humanity. That no matter who or what we are, when faced with a need, at the stake of human condition, we will take action… We care cause we relate to the fact that might easily be the one in need and I hope the same moral conflict in others will still exist and someone will be kind enough to help me!
As a caregiver to a loved one, there are different levels of emotion before the sense of burden comes along. And once it does, then there’s guilt for feeling burdened. That comes from not getting those much needed breaks for ourselves.
There is a wide range of emotions that come long before one falls into the ‘burden-guilt’ trap…but something we don’t talk about often for caregivers is the need for self-care. I was fortunate enough to hear an interview with a caregiver (on CBC – Sunday Edition) just a few months before my caregiving journey started in earnest. I learned a few things: the importance of accepting help and the importance of taking time for myself. I’ve only faltered when I didn’t do one or the other (or both!)
Honestly – I don’t feel burden or ‘why me’ … I feel blessed that I have so much support in my life. For my husband, I only feel love. As much as I’ve been his caregiver, he is my rock in so many other things.
I know I am so very fortunate. and for that I’m grateful. For me, there is no burden, just love and gratitude.
I am a nurse practitioner. In the field of nursing we call it “burnout” when the burdens of caring and providing for others fatigues you to the point of exhaustion and inability to often meet your and/or your family’s needs.
It is a challenge.
It is a burden.
Above all of that it is a responsibility.
We are the capeless heroes that never get a casserole.
I have given care for years to various ones. First as an RN and then as a mom who had a terminally ill child, then, my parents. Still in the midst of caring for my mom. I liken the fatigue I felt with my son, as PTSD. I didn’t realize it at the time. Burnout is another term I’ve used. Fatigue is yet another term. I don’t think I’ve ever placed blame on the person I’m caring for, but more on myself for not being able to meet all the challenges.
I love what I do, I would not want it any other way. What we, as caregivers extraordinaire, need is the ability to find time away to regroup and recharge. We need the ability to not go broke in caring for our loved ones. That alone, would remove stress from our lives. Tax laws should be changed to give us a break on this. We are keeping our loved ones from becoming a burden on society on the tax payers dime. I try to remember that I am serving my Lord and Savior as I care for my mom. I am honoring my parents, as is commanded. May God bless each of you, as you care for your loved ones.
It does seem like any concern is a complaint when it is not. It is just a plea for how something can be done better or easier for both. This is definitely a learning process but one that has no room for error on either side.
I place all the blame on myself, why not everyone else does. I’ve been taking care of my parents for 20 plus years, I even bought the house next door to them for convenience.
My dad passed away last March on my mom’s birthday so now it’s just mom. She has COPD and its very bad. She only goes on 3 rooms of her house and has anxiety issues that prevent her from leaving her house, period. This is a constant battle with her because she does not allow me to be gone because she will panic. My family is headed out the door at the moment to go on a much needed fishing trip and I get left behind. I do not resent my mother for this.
I am sitting here waiting for her to ring the wireless door bell I have for her letting me know she up so I can do our daily care routine, I do not resent her for this. I love my mother and would never leave her in a million years, but it’s exhausting at times because she has no zest for life, all she wants to do is smoke (she’s been quit for a while now ) she asks and I say no, she resents me for this, I feel guilty because I am not giving her what she wants, it’s my fault she’s not happy and she lets me know about it to, this is where I resent her attitude towards me.
If I give on, she will end up in the hospital just like every time before and its my fault, my family says so, and so do I. Its not burn out exactly, it’s not knowing what to do when she gets like this and no matter what choice I make it comes down to her health or her happiness.
My burnout and frustrations came from family not working with me as a team to help take care of Mom … And accusing, ridiculing and blaming me for the dysfunction.
I’ve been a caregiver for six years for my,now, 91 year old mom. Once she said to me; “I feel like I’m a burden to you.” I knew that denying that would be a lie so I said in a soft and loving way; “yes, sometimes caring for you is a burden just like I was to you when I was young and you were raising me as a single mother. But that doesn’t mean we give up just because something is challenging. Our love, commitment and loyalty means we stay and we persevere. My dog got me up three times last night and that was a burden but that doesn’t mean I give her away or that I don’t love her.”
My mom nodded and replied; “I’m so grateful to you.” And my response was; “I love you and I’ll always be here for you.” Something my two older sisters know nothing about.
Caregiver stress syndrome is a much better term. There are degrees of it just like any other syndrome. Burden allows the greater society to continue to ‘blame the victim’. We blame the person who took on the role of caring for another person instead of providing adequate services and supports.
And for those who don’t want to be called caregiver: this is why we do it: in order to access services and supports we have to call the person giving of their love, time and effort something. The political will to support ‘grand daughter’ or ‘husband’ or ‘wife’ doesn’t exist in the US.
Those of us in caregiving research often wore the same shoes and walked the path. We use the term caregiving or care partner or dyadic care in order to try to get the local, state and federal funding to assist those who provide care. We don’t do it without thought.
It is what it is. And it’s not the patients fault, but we have to acknowledge the true weight of what caregivers go through.
You can come up with something a little more tactful, yes, but there’s no positive spin on what it really is.
A few weeks ago we were talking about how we became caregivers on the Facebook page. I was surprised by how many professional caregivers said they didn’t have a choice in the matter, it just happened. I was also surprised by how many parents and spouses said they chose to be caregivers when there was an unexpected healthcare emergency.
The biggest thing that stood out for me was how many of the people in our community have both provided paid care for work and unpaid care to a friend or family member.
So, how did you become a caregiver? Did you have a choice in the matter, or was it something you just had to do?
I became a caregiver when I realized no one else was going to be able to fill the need.
I taught full-time in a tenure-track teaching position at a prestigious university. As I prepared my dossier to go up for tenure, my dad called to tell me that he had been in the hospital. He had had a TIA or “mini” stroke, but was ok. Meanwhile, my mom’s Alzheimer’s was progressing faster than expected. A week later, was spring break at the university, so went “home” to see the folks. As I walked around their house and saw how poorly they were managing, I knew I had to make a difficult choice.
I walked away from my career and put my life “on hold” as it were to care for my folks. It was a choice, but it was also true that choosing not to help them was not an option.
Not a choice an obligation to the ones we love
I became a caregiver for my Mother out of choice. Plus it was also a necessity. I was the only family member in the area and just sort of “fell into” the job. It was never a “job” as I had promised Mom to take care of her. I was able to do so as I am disabled so was not working.
The Caregiver Space was such a huge support for me, I received so much encouragement and generalized help. The course the VA sent me through was also a huge help.
Since Mom’s passing, I have become a part time caregiver for my neighbor who had a paralyzing stroke. It is great to be able to help them as they were always there for me when I needed them.
I became a caregiver for my widowed Father 4 years ago when he was 91. Although I have 4 siblings… no one stepped up and he was not doing well on his own. I was checking on him daily but when we moved out of state for a couple of years we had no choice but to have him come with us… 4 yrs later he is still here. We have moved back to our home state.
Dementia is getting worse and it is a lot harder to care for him. He is getting combative. Everything has to be planned around his needs. My poor husband is really over it. He is retired now and we can not enjoy our retirement. We can not just go out for the day or take a spontaneous trip to see our grandchildren and my siblings still have not stepped up. He does not have a lot of money so hiring help is out of the question… we are paying a CNA to come 3 days a week to bathe him now as he has refused to bathe but says he already did.
I started caregiving in 2008. I went to work for a company that cared for folks with developmental disabilities. It is a rough field but managed stay for a year and a half. I decided to leave there when I realized my own physical capabilities. I was 57 at the time.
I started caring for mostly for my mom and my dad as his health declined. I made a major move to Colorado for them. My Dad passed away October 2013. I continue to care for my mom today. She is 84 and has physical
disabilities and so far I am able. We lived in my brother’s house and he took care of us. In July of 2014 he had medical issues going on and I cared for him too. He passed away in November 2015. He was the baby of our
family. After helping her settle things there, I moved my mom and I back to New Mexico. Closer to my daughter.
I think sometimes about how much I want to live my life but she would alone and where? I allow myself to feel the anger, resentments, try to stay positive and do for me what I can. I don’t have the answers. I have a couple good friends in similar situations that are good support. I get up every day and put one foot in front of the other. None of us knows what life brings so it’s best to enjoy something in each day. Life is an adventure.
Thanks for reading and reaching out.
I became a caregiver when my wife was diagnosed with Alzheimer’s.
There was no choice in the matter, I did what a husband is suppose to do.
I didn’t have a choice at being a caregiver. My sister was married with her own family. Since I was single, the duty fell on me to help my dad with mother and now, I take care of him.
In my paper (delivered at the Alzheimer’s Association and American Society on Aging) the topic of the “Moral Dilemma of Caregiving” is discussed. The ethical dilemma comes when the caregiver is forced to choose between 2 wrongs. For instance, giving up a source of income to become an unpaid, full-time caregiver.
For myself, caregiving meant moving to our new retirement home and bringing Mother with us, instead of putting her in an excellent facility where I had worked. I’m still paying for that decision in the lack that social support I have been able to nurture for myself in the new location.
Then Mother died, and my husband was given a terminal diagnosis. In the space of a year I had lost my jobs, proximity to family, my tribe, my Mother, as well as my identity as an esteemed organist and a geriatric social worker with credentials in assessment and national presentations. Gone. Now I lead hikes…and read emails on “caregiving”.
11 year ago my wife had a liver transplant, now we’re told she has cancer, plus heart problems. I didn’t ask to be a care giver, it just happened to me. Holding down a job and care giving.
Death made me a family caregiver twice. After my father died, my mother struggled, became unsafe, and I moved her to Rochester, Minnesota. My twin grandchldren’s parents died in separate car crashes, and the court appointed my husband and me as heir guardians. We did this for seven years.
In 2013 my husband’s aorta dissected and he had three emergency operations. During the third one, my husband suffered a spinal cord injury that paralyzed his legs. I’ve been his primary caregiver for nine years. Sometimes I think I need a caregiver myself.
When I got married I made a choice that I would always care for wife no matter what. Diabetes was newly diagnosed a month before our marriage. Over the years, the diabetes evolved into more and more issues (renal failure, kidney transplant, major stroke, breast cancer and finally seizures. Not once did I doubt my promise or commitment in the forty seven and a half years that we had together.
It was something I had to do. My husband’s Atypical Parkinsonism impairs him but not fully enough to warrant outside help…yet. However, driving, dispensing drugs, some grooming/dressing, use of cell phone, tv remote, and computer all require assistance. Add to that the daily, ‘where did I put this,’ (many times a day) AND, last but not least, vision impairment from coincidental right eye retinal vein occlusion and neurological effects if vision in ‘good’ eye
….and you get spousal caregiving.
I became a part time caregiver for my mother when she had a stroke in 2003, at that time I was working as a Licensed Vocational Nurse and would bring food to my parents and bathe my mother before I went to work during the week and then would go on weekends to care for her.
My father started having symptoms of Alzheimers disease a few years later and I became his caregiver as well. My father passed in 2010 and I moved my mom into my home and I was forced to resign from my job, as I could not find a qualified caregiver to stay with her while I worked.
That was 7 years ago, I continue to care for my mother and her health has continued to decline. This year she had a UTI in January and was in the hospital for a few days, I took her to her doctors office for a follow up appointment in February and she got the flu, she became dehydrated and was hospitalized. I opted for her to have a feeding tube, but the doctor had to do a Hiatal Hernia repair first, this was a major surgery for a 95 year old. She came home and a few days later developed a bowel obstruction which required another major abdominal surgery.
She is home now and slowly recovering, she has had some TIA’s which has left her combative and confused. I became a caregiver as my parents did not have long term care insurance and could not afford to hire quality caregivers. I had worked in a nursing home as a charge nurse and had decided that that was not an option for my parents.
I am fortunate that I have the training and knowledge to give my parents loving care in the home setting for many years. This has been a strain on every aspect of my life, my marriage my profession and my dream for further education. I am happy that I had the opportunity to provide the care to my parents, but hope and pray that my children do not have to do the same for me.
I became a caregiver when my husband became seriously ill. That was 20 years ago and his health has declined dramatically over time with many added health conditions. I continue to be his caregiver and will be forever.
I became a caregiver when my middle daughter, Amy, was born. She has a chromosome disorder that has affected her physically and developmentally. She is non verbal and functions like a 2-3 year old. Amy is 33years old and lives at home.
When Amy was 4 years old, my husband and I adopted Ashley. Ashley has cerebral palsy, is deaf and nonverbal. She functions like a 9-12 month old. Ashley is 28 years old and lives at home. As my husband and I get older, the caregiving is getting harder and really taking a toll on us. I love my girls with all my heart but it is definitely hard!
I had a choice to become my moms caregiver. It was either me or a home. I
chose me. She needs one on one care all day every day and the best way for
her to have that care , was for me to do it.
Becoming a caregiver just happened
I was 23, had a five year old and a 2 month old. My mother was diagnosed with stage IV colon cancer, and her “husband” decided he didn’t want to clean up crap, and I was already an “expert”. Sadly, she passed away 2 months later, and her “husband” left before her funeral. Look ahead 30 years later, and it was my turn at stage II colon cancer, and my two girls were thrust into being my caregivers. My oldest had three little ones under 10, including a newborn. My hope is that the pattern doesn’t continue. But … if it does, I know my grand daughters will pull their sleeves up and take care of their mom, too. – Joyce
It just happened, my sister asked if I wanted to quit my job to take care of mom and I said yes. I had 5 great years with her before she passed. ? – Terry
I went to visit my mother after I graduated high school and her caregiver said “oh thank god you’re here” and left and never came back!! So I got thrown into the role and did it for 10 years!! – Koren
It happened but i am thankful because no one would’ve took as good of care of them as me. God bless the staff at their nursing home. – Stacey
Just happened as my grandmother got financially destroyed by her youngest child/son! Her place was so in ruins & she was fallin fast in her health dementia/alzheimer’s! Its been a constant uphill battle not only with having to redo her home, but taking care of her & her health! Its 6am to midnight daily! I agree, we are so tired, my wife is now by my side through this journey! Never give up! ?☝???☝?❤️ – Duane
My 26 year old daughter requires 24/7 care now due to Muscular Dystrophy. She does have nurses, but I am also a care giver for her. I had to give up my career. I love her more than anything in the world – but I will be honest – I am tired. I am 63, went through breast cancer treatment two years ago. I can’t afford the medical coverage or the medications. I have about $8000 worth of dental work that needs to be done. I took care of both of my parents until they passed. I have taken care of everyone through the years and not having any brothers or sisters – I have no one to take care of me. Yep. I am tired. – Debi
I was 25 newly married and my mother was getting lost driving to the same job she had for 20 years. 3 years later I’m sitting here frustrated I can’t get the stupid railing together from her falling out of bed. She doesn’t even know I’m her daughter these days. – Shanna
It just happened for me, when my husband had an accident and lost his job and went into severe depression. Neither of us asked for it. We don’t really want it now, either, but we have learned to accept. We are some of the lucky ones, as we are doing things that we love. Hubby potters in his garden, and in his shed making things. I do some sewing, making things for family and others. But, oh my, the years have taken their toll. Hubby’s physical health has taken a battering, and my physical and mental health has too……after all the stress of having to make some very big decisions on my own, which was new to me. We are coming out the other side, not sure of what the future will be for us, yet. Hubby is nearly retiring age, but I do hope his mental health continues to improve. – June
It just happened, I was a friend and saw someone needed help. I think God puts people in our lives for many different reasons and this must be the reason I’m there. – Mary
In my case, it just happened. I’m blessed that I am able to stay full time with my dad which enables him to stay in his home. My mother is in a nursing home and we visit daily. – Marie
An old roommate suggested I try in home care and that was 3 years ago. Now I’m HCA certified working towards CNA. – Jean
My son was born with a rare genetic disease; and now he is 22 years old and he is living at home and I was awarded the privilege to be his full time caregiver. – Brenda
It just happened. My husband had 2 strokes one week apart. I wasn’t prepared. – Tanya
It just happened….although frustrating at times, I wouldn’t have it any other way. Blessed to still have all these moments with my mom. – Penny
At a early age I had to take care of my little brother ,then my great Grandma, just over the years I became a CNA and Caregiver. – Anna
My husband became a wounded veteran. Life happens. We don’t choose for illness, disability, or old age to remove ability to daily living activities. It just happened to all of us. – Mary
When I got married and spoke my vows “In sickness and in health for richer or poorer until death do us part”. It’s been 8 years since my Bill’s illness and 5.5 years since he passed away. I had no help and held down my full-time job in the process and I was his primary caregiver and I’d do it all over again if I had to. – Lucy
It just happened! I did work as a caregiver and companion for the elderly about 11 years ago. Here I am doing it for my husband, and soon my mother. – Donna
My daughter was fell ill five years and was undiagnosed two of the five years. We found she had a rare genetic syndrome. She was only 13-1/2 at the time. Normal child until then. Something came and took her in the night…it seems. Sad, we try all the time to help her come back to us. But it is as if she is missing and everyone called off looking for her because she is rare and in a league of her own. I must cry every single day. The amount of daily grief is almost unbearable. But even worse is knowing how much she has lost. How much she suffers. How very hopeless the future looks. We just keep moving forward and praying for answers. Praying for her to recover. Praying for her not to suffer. It’s not as if I can say she lead a long happy life…ugh. This is her story and she is my hero. I pray God gives me the strength to continue walking with her until we get back her life. – Faith
It just naturally happened and was such a blessing. It allowed me to have more time with my best friend. Even on the hardest days, it helped me grow. Then God chose him to go to heaven. This is much harder now not being one. – Christy
Just happened found out my son had muscular dystrophy at 5 but our lives changed most at 9 when he lost the ability to walk. And now he is 20 and full time care. But I wouldn’t change a thing. This world could not handle my boy on his feet the place would be on fire. His wheels keep him grounded. – Erika
Just happened when hubby got cancer and now terminal. Then Mom got sick, too, and lives with us. So I have two now. – Cathleen
It happened when my husband was diagnosed with Alzheimers 4 years ago. We don’t have any kids so I am the one who is here for him. – Lynne
It just happened when my husband’s dementia was diagnosed and got worse. I love him and would do anything for him “till death do us part”. – Jenny
Caregiving just happened. I was 12 when my mom had her first massive heart attack and open heart surgery. When I was 18 I became a live in caregiver for a lady and lived with her almost 7yrs. Afterwards I became a live in for another lady for almost 4yrs. I just went from one person to the next leaving no space between patients and began caring for another woman for 2 1/2 and am currently a live in since Jan for another lady. This just seems to be my life’s purpose. I’m not married and have no children just a long list of “lil old lady loves” and wouldn’t know what to do if my life didn’t revolve around caring for someone. – Cameo
Just happen this time, my mother-in-law had a stroke, we moved in with her to take care of her, she now is in stage 3-4 dementia. I have been a caregiver 3 other times in my life to family members. – Diane
It just happened slowly. My husband stated to decline and I was there. 20 years later I am still taking care of him and trying to work part time. Not how we pictured our “Golden Years”. – MaryBeth
It just happened, hubby had a stroke July 2015, I didn’t even think about it, it was a given that I would give up my career to care for him, no way was I putting him in a home, hospital. Staff and social worker said I was “MAD” but I married him in sickness and in health, till death do us part! It’s hard at times but love him with all my heart! – Pauline
Becoming a caregiver was a choice
My husband and I made the choice to take care of his mom. She passed this past Dec. We are now helping out with my mom. You just do what you know is the right thing to do! – Linda
I decided to care for my mom. It was a difficult process but it was the greatest gift I gave myself. – Leuqar
Both I chose to marry my husband in a wheelchair, I chose to be a foster mom to possible special needs child and is getting more complex days before his adoption where we commit to be his forever home. – Kirsten
I made the decision to marry my husband, my prince, my best friend. Knowing that I would have to take care of him. Never occurred to me how much work it would be. Some days I’m physically and mentally and spiritually drained. But I made my vow. – Stephanie
I decided! I gave up nursing school to be the voice and the grunt of the people! I am a helper and always will be! – Michelle
I was an only child, who cared for her parents as they aged, while working full time in a high stress career, managing three daughters and helping in their lives, and married to my hubby, who already had parkinson’s. my parents passed, 5 years apart, while my hubby’s health deteriorated. he had a triple bypass and ablation (MAZE) procedure; later, a deep brain stimulator, shoulder surgery, etc. i retired early, 3 1/2 years ago to care for him. he was no longer able to do his own meds (things kept getting missed or screwed up), and getting his own meals (even after i prepped them) was too much for him. since then, he’s been diagnosed with “mild to moderate” dementia, probably from his parkinson’s disease. that explains much of the losses we’ve seen in his abilities. so, it “just happened”, but this part was anticipated. some days i think his disease is killing me faster than it is him, but we just keep marching on. – Marilyn
I was blessed 21 years ago with the very house next door to the one I grew up in. My Dad, Mom,& Grandmother still lived there. My grandmother then needed round the clock care and I stepped in because I knew it was hard on my mom with her own health problems but she helped where she could. I took care of her to the day she died. I took on a job caring for a woman who was a bit difficult for anyone else but she took up to me real quick, she was 103 at the time and was my dearest friend, I adopted her as my grandma and we were 2 peas in a pod, she passed away right before Christmas last year at the age of 105, I miss her. Then my parents and sister needed more and more care as their health deteriorated, my sister passed away last year on 2/18/2016 which was my other sisters birthday and my dad passed away days later on 3/1/2016 which is my mom’s birthday, we were robbed by our neighbors while we were standing in the room with my dad as he passed, then my mother’s health had gotten so bad this last year I am on 24 hour care at her house, as hard as it is to watch her struggle with her copd among other respiratory issues, I know the end isn’t far, I wouldn’t leave her for the world, for in fact besides my husband and 4 kids, she is my world❤ – Genie
I’ve been a hospice nurse for 7 years in SC/NC. I relocated last summer to be near my parents in Connecticut. They are both in their 80’s in great health. With the work I’ve done for years, I understand too well that one event can change everything. I am positioning myself to be available as their needs progress. Although not officially yet, I am choosing to be a caregiver. ❤️ – Kristie
Something happened and I made a choice
Mom was in the beginning stages of dementia for nearly a year when dad got sick and died last year. I am one of 5 kids, but the only one who didn’t own a home – so I was “free” to move in with mom (if by “free” you mean able to break my lease, move further from my kids and fiancee, and arrange a transfer to another job!). But, once the house is sold, mom will be moving in with one of my sisters, so I will be free to resume my life…but close enough to help sis with mom. – Judi
My brother and sisters had spouses and children, I didn’t want them to have to go through worrying as much keeping as much normally as possible, it’s the best thing I could do for my family and I know as much heartache we share they appreciate my decision. – Sophia
It just happened, but I made the choice to take care of my Mom. I could have put her in assisted living years ago but decided to take care of her in our home instead. – Kathy
I was out of work and my neighbor needed help with all types of things. So I would go there and help her. I also helped her with her dog Snowy. Well she had passed away that’s when I decided to become a care giver and I also took her dog so he would still be loved. She wanted me to take care of her baby. Before she pasted I told her that I loved her and I was taking Snowy home. I still miss her so much and so does Snowy we have a new person next store he still cries. – Peggy
I decided to be my mom’s caregiver, but my husband developed pulmonary fibrosis and later had a lung transplant, so no decision there. – Lucy
For me it was something I never thought I would be able to do. But I got a job at a care home and found something that gives me so much fulfillment and purpose. Side benefits are lots of smiles hugs and love. – Lesley
My husband was a incomplete c5-6 quadriplegic when we met. It was something I accepted from the start. About 6 years into our relationship he fell and broke both of his legs losing most of his independence. With this came a lot of health issues. Then in 2015 I decided to be his mothers caregiver too, she had Colon Cancer. Sadly we lost her in Dec 2015. My husband passed away last month. Now I have to learn to care for myself. – Staci
My husband became ill, my wedding vows said in sickness and health till death do us part.. I had been an EMT and an MA so I chose to do it myself, I have no regrets he passed at home March 18, 2016. – Linda
I decided to be a Nurse as a career, and then my Mom was diagnosed with Alzheimer’s, so that both just happened and I made the choice to move from MA to FL to help care for her and my Dad and continue working. – Stacey
I cared for my grandmother, mother and part-time invalid husband (deceased). Later on, when I couldn’t find an office job, it was suggested I become a private caregiver. God made me for this, and I never looked back! Then disability took my career, and now my husband is my caregiver. I am blessed with a caring hubby, but I miss my job. – Sylvia
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There’s a lot of advice on how to care for someone with Alzheimer’s without, well, losing your mind.
Not a lot of it works.
I was a very earnest child. My poor parents had to deal with me taking things very literally. I still want to correct every mistake and misunderstanding. Luckily, now I have a lot less free time to waste on hopeless battles.
This attitude doesn’t work very well for life in general. It certainly doesn’t fly with someone who has Alzheimer’s.
Then I read an article about a woman whose mom moved in with her and her husband after her Alzheimer’s progressed. Her and her mother butted heads, but her husband and her mom hit it off wildly. This caused its own problems, as it can be tough to watch your husband become your mother’s new golden child.
How did he do it? He loved improv and took every moment with his mother-in-law as a new skit, a new adventure.
Something clicked for me.
I’ve never taken an improv class, although it’s on my list of things I’ve been meaning to do for years, next to learning Spanish. I’ve circled the improv classes in JCC fliers more times than I can count, but I’ve never actually signed up. But, I did have an elementary school teacher who was obsessed with improv and taught our class the basics.
And, thankfully, you can learn just about anything online.
My grandmother, unfortunately, wasn’t as fun as the woman in the story. Most of my time was still spent facing accusations and demands, but at least now instead of feeling insulted, I was working out the next best line. How could I distract her long enough to change the topic? Could I manage to make her laugh? (Usually, no, I could not).
Even if she wasn’t having a good time, my experience was much improved. Instead of trying to convince her that this kitchen that looked just like her kitchen was, in fact, her kitchen, I humored her. I made up elaborate stories about where we were and why it looked so much like her house. There were all sorts of zany reasons why we were waiting there, but don’t you worry, you’ll be heading home shortly. And then we’d get her bundled up and do the equivalent of spinner her around in a circle before a game of hide and seek so we could take her “home.”
I did particularly enjoy her stories about her trip to China as a young girl (not a real thing), the other people she met while she was on her cruise (she was in a nursing home for respite), and her complaints about her boss (her feet were bothering her from standing all day in high heels, although she was bed-ridden and had retired long before I was born).
It made the days a lot more fun and a lot less frustrating.
I never could quite get the rest of the family on board. Everyone else was still trying to convince her she was at home, those were her red shoes, that was FOX News on the TV, they already fed her dinner, and they were her daughter/granddaughter/neighbor. You can’t win them all.
But it worked for me. Maybe it’lll make your day a little easier.
Like so many children, I’m simultaneously exactly like and nothing like my father.
One of the things that’s very different about us is that he’s very much a caricature of the absent minded professor while I have a life that’s planned weeks in advance in a color-coded calendar.
He’s also oddly impervious to worry, while I’m wearing circles into the rug with anxious pacing.
His girlfriend is a very good match for him, but maybe too good. They are both incredibly kind people whose feathers are impossible to ruffle and they probably can’t find their car keys. Or their car.
This really came out while they were taking care of my grandmother. They are three very smart people, but sometimes it wasn’t easy to tell which one of them had dementia.
My grandmother stubbornly insisted on managing her own medication, bills, and just about everything pretty much until the end. For once, I felt like that was probably a wise choice.
As my grandmother became more frail, I grew convinced that it was actually better that I was a plane ride away from them. The more dementia took her ability to care for herself, the more I worried. We hear plenty of stories about family members whose well-intentioned help was more trouble than it’s worth, and I’m pretty sure I was one of those annoying, meddling family members. My dad was just too nice to tell me to shut up and stop nagging.
It was all I could do to keep myself from texting them twenty times a day to make sure they had set up that follow up appointment, read this article, don’t forget to pay the taxes, update this paperwork, and close the windows upstairs because it was going to rain tonight.
Yes, I know my father is a successful adult. Who raised me just fine, even if he did sometimes put my sister’s kids to bed with their shoes on and did once feed us tuna straight from the can when mom wasn’t home. I did sort of suspect if my mom hadn’t been in the picture we’d have ended up being very polite, but might have our pants on backwards.
Which would lead to me texting my dad to make sure grandma’s pants weren’t on backwards.
But let’s be honest here: grandma didn’t know if her pants were on backwards. Can you even tell with elastic waistband pants? She’d be in the background insisting the steak they’d dutifully made for her was actually a salad. I was getting myself worked up over things that didn’t matter while they were doing their best to keep her weight up.
I wasn’t just bossing them around, I also wanted to help. The problem was, I couldn’t walk over to grandma’s desk to find the paperwork to make sure the bills had been paid, taxes filed, and deal with that denied claim from the insurance company. They would have to scan the paperwork so I could see it. Which was going to be more annoying then just doing it themselves. Plus, they weren’t worried about any of these things. I was the only one who thought these things were urgent matters.
When I was there in person, I could actually do some things that were actually helpful. Sometimes. Only most of the really helpful things I could do in their suburban town required me borrowing their car to run errands, which they would have to explain to me. I kept an eye on grandma. I straightened up the house. I did a bunch of chores they were completely oblivious to.
It still felt like when I used to “help” my dad as a little girl and would follow him around asking 1,000 questions an hour. In fact, it felt exactly like that. I wasn’t actually helping them at all.
While my grandmother would keep a wary eye on me, she trusted my father completely. The only way to calm her down was to reassure her that he would be back soon and take care of it.
She did not trust me. And for good reason. They were pros at maneuvering her around her victorian house. I was not. They understood her demands when they didn’t make any sense. They were far more patient than I am, which is how they calmly listened every time I gave them advice they did not want or need.
As much as the whole family jokes about my dad and his girlfriend being scatterbrained (and the stories we have to tell…) they are still the people I call when I need advice. My dad is the most reliable person I know, I just know he’ll be a little behind schedule.
Grandma died before I managed to get my backseat caregiving in check, but I suspect this is going to be a lifetime struggle for me.
Caregivers come from all ages and walks of life. So many of our community members have been part-time, full-time, long-distance, and professional caregivers over the years.
But as Cathy put it so perfectly:
It isn’t a competition regarding when we started caregiving, every version of it is hard.
I asked our community members how old they were when they became a caregiver. Here’s what they had to say.
My mother has been sick all my life. I don’t remember a time in my life I wasn’t helping her with some sort of medical assistance. – Sara
If you consider cooking and cleaning and being emotionally supportive for people who have special needs, technically, 6, but officially 24 is when it was clearly an adult caring for individuals with disabilities. – Eric
I suppose it really began when I was about 5, my younger brother had cystic fibrosis and I was with him till his last breath when he was 15. When I was much older we had my grandma with Alzheimer’s live with us. Then I helped my mom care for my dad who passed away in 2008 with complications of COPD & CHF. Now a caregiver for our adult son age 25 because of a TBI. – Aria
I started helping at 6-7 years old. My father had cancer and we helped mom as much as we could. He was 49. I would pick him up the floor, he’d be so weak from cancer. – Nicole
I became a caregiver at 6 yrs old, started with my 4 yr old brother. I’m still a caregiver but for the mentally challenged now. – Doreen
I was born into it. – Connie
At birth. – Skyler
I was 12 when I started. I had to take care of my mentally ill mother plus my younger sister. I’ve taken care of both my grandparents, great-aunt, both adult sisters, neighbor lady, and now my dad with dementia. I’m tired. – Trudy
I helped take care of my great-grandmother when I was 13. When I was 14 I took care of my mother when she had a nerves breakdown. At 19 I became a Certified Home Health Aid and worked outside of the home. At 23 I gave up that job and moved in with my grandparents to help take care of them. I’m now 34 and still taking care of my elderly grandparents, my mother who has had another breakdown and cant really function on her own, and my father who has physical limitations and failing health. Over the years I have also cared for my uncle and his handicapped wife. I feel like i’m watching my entire family, everyone I care about, slowly slip away a little more each day. My brother died 13 years ago and my best friend died by suicide 3 years ago. My life has been dedicated to taking care of my family. I don’t really have a life out side of that. – Amanda
From 14-36 years old I helped my Mom (and Aunt also who lived with us). Now I help my Dad and I’m 48. – Rebecca
I would work as a babysitter at 14, doing caregiving. At 17 I started helping with my nana. – Cheyenne
My dad got sick with heart disease and related problems when I was 15 and I helped care for him in the 21 years before his death. I moved 150 miles from my hometown to live with my mom and care for her the last few years of her life, I was 54 then. I’m 59 now and I care for my sister. – Joy
My mother was diagnosed with Breast Cancer in 1976 when I was 11 and needed more and more care by 1980 long before cancer was a household word. She died in 1989 just after I graduated from nursing school. – Loretta
The neighbor hired me to take care of the mentally impaired son when I was 15. All my jobs, except for one, had some form of taking care of someone else. I’m 58 now. My husband has asked me to fight the urge to take care of other people and so we can enjoyed our retirement years finally taking care of each other. I still take care of people occasionally. – Madeleine
My grandmother was ill…it was summer…what else needs to be said??? – Gwen
I was 24 for my Mom. I helped with my grandma at 16. I’m now 47. I’m now chronically ill. We help each other with cooking. I do the laundry. We have someone do the yard work. I don’t know how long it will go on but I will do the job until the end. No way I will let her go to a home. – Alicia
I was 16 and still in high school. – Tracy
I became a caregiver at 17. Now I’m 34. – Rachelle
I took care of mental challenged children. They had been abused and their parents on drugs. – Jo
I started taking care of my mother at 18. I became a nurse when I was 27. – Lois
I was 18 when I became a caregiver for my grandfather. – Margie
I became a caregiver at 19, as soon as i left high school. I gave up lots including college to take up being a full time caregiver to my parents. Took care of my dad until his death in 2008 and still taking care of my mom. – Julia
I was 19 when I started as a health care aid. – Mara
I started at 19 years old. I’m 22 now. – Bri
I started at 19, as a professional caregiver. – Beth
I was 19 when I gave birth to a son with Lissencephaly. He is now 21 and needs 24/7 care. – Shaz
I became a caregiver at 19, right out of high school. Now 30 years later I’m still going. – Diane
I was 19. Now I have been doing it for about 20 years. – Kama
My dad had a massive stroke a few days after my birthday and my mom couldn’t stop working. I was enrolled in online college courses so I was able to be with him during the day. He eventually recovered well enough to be alone and take care of himself. At 25 I took care of him while he went through chemo and radiation at MD Anderson for almost two months. We live in Mississippi so I drove my parents out and stayed with them. Sadly, he passed away from it after a two year battle. Two years ago at 30 I moved back home to be my mom’s full-time caregiver after her early onset dementia began progressing and she didn’t need to be driving anymore. It’s now reached a level where I have to help her bathe and get dressed, but she knows enough that we are still able to have a good time. – Angela
I was 21, mom of a 16 month old and 5 month old when my 5 month old was shaken by his babysitter. They didn’t think he would make it, he did but he is fully dependent and at the cognitive level of a 6-9 month old though he is 14. – Tiffany
My Mom had a brain tumor in her brain stem. It was near a main artery so they had to leave some there, which grew back in 2006 and she had her 2nd brain surgery. From her surgeries she had a stroke during her surgery which left her paralyzed on the left side, short term memory was affected, vision was affected, speech. Lover her dearly and I still care for her and I am 48 now. – Michelle
I was a caregiver for my grandfather for about 2 years, assisting my grandmother, when I was in my early 20s. In 2008, when I was 50, my Dad was diagnosed with Alzheimer’s, so I moved in with parents to help my Mom with his care. We kept him at home until he passed in 2009. I continued to live with my Mom, and am still with her to this day. She is now 86 years old; I am 58. I have been her sole caregiver since 2009. She has numerous health issues, including difficult-to-control diabetes, COPD, acute and chronic CHF, HTN, diabetic neuropathy, PVD. I also work full-time from home as a medical transcriptionist. Yes, I am tired, but God will get me through it and help me continue to provide the best care possible. – Diane
I became a caregiver at 21, I think. It’s been so long that I forget. – Amanda
I was 21. I’m 57 now and still caregiving. – Michelle
I was 22 when my husband had a TBI. – Mel
I was in my 20s. I’m still going strong in my very late 50s. – Deborah
I became a caregiver at 23, I’m now 58. I have gone from one person to another all those years. – Debbie
At 23 I started in a nursing home. Now I’m taking care of my husband. – Shelly
Married less than 3 years, began caring for my husband’s mother (breast cancer – no doctors or medical care, per her religion). Also, her sister had Alzheimer’s. Then late 30s, caring for my own mother until her death from COPD. – Lynn
At 24 I took care of my mom for a year before she passed away. – Fatin
My first and only son was born with a brain injury during labor and delivery, due to medical negligence. He has cerebral palsy, cortical visual impairment and many struggles and delays. But he is my whole world. – Liz
Mid 20’s is when I started taking care of my mom. Almost 60 now, and still caregiving for others. I’m tired and ready to retire. Hopefully within the next year. – Penny
I became a caregiver at 25. I’m 41 now. – Shannon
I was 25 when I started caring for my mother with early onset Alzheimer’s. – Lindsey
I was 25 when my mom got a heart attack and, later on, a stroke. – Gloria
It was my 26 birthday when my husband had a stroke,that left him with no speech & paralyzed on right side. I’m still caring for him. The older you get the harder it seems. – Patti
I became a caregiver at 26, and I’m still a care giver for the disabled. – Terrie
I was 27. I have a 19 year old with Spina Bifida. – Jackie
At 28 I became a caregiver after my sister suffered a traumatic brain injury in a motor car collision. – Tracey
When my husband suffered a severe closed head injury from an accident. Took care of him for almost 39 years. Now I have to figure out the rest of my life. – Darnly
I became a caregiver at 29, when my son was born disabled. – Terri
I was a caregiver at 29 and again at 43. – Jennifer
At 30 I became my parent’s caregiver. – Kim
I will be starting my 26th year on May 27th. – John
I was 32 when I moved in with my 80 year old Grandma to help with her stroke recovery. It’s coming up on 2 years since I made one of the best decisions of my life… ❤️ She took 46 steps on her own today!!! There were so many unrelated health issues for over a year after her stroke, so rehab was put off for a long time. Praise God, she’s finally in good health again and is making wonderful, albeit slow, progress with recovery. – Cyndi
Mom was diagnosed with cancer 6 years ago. Took care of her for two years and then my father as he had health issues toward the end of mom’s life. I am still caring for dad but now on hospice care and in my home. – Rachelle
I was widowed suddenly at 29. I became a caregiver at 33 for my boyfriend with cancer. He had lymphoma and brain tumors. – Coral
At 33 I started working in a hospice house. – Karen
I was 34. It was the end of everything. The beginning of everything. – Charles
I was 35. It has been 5 years since my husband’s accident. – Stephanie
I was 35 when my mother had a sudden ruptured brain aneurysm. – Christina
I was 37. Momma had Alzheimer’s. – Mary
I was 38 when my mom got sick, well sicker. We had a drapery shop we had owned and operated for about 25 years at the time, I tried to juggle taking care of her and keeping our shop afloat, eventually I had to close the business because she needed 24/7 care. She already had cardiomyopathy, and had it for years. Then one day she thought she was having a heart attack. Brought her to the emergency room and found out she had pneumonia, congestive heart failure, and throat cancer. Her throat cancer was in stages 3 and 4, and they gave her about 6 months to live. She was a complicated case due to the cardiomyopathy and CHF. No chemo, radiation was our only option. That was May 2003. With aggressive radiation for five weeks, twice a day, five days a week, she lived another two and a half years. My dad who has Parkinson’s couldn’t take care of her on his own, she needed 24/7 care. I took care of her, now I take care of him. We do what we must for the people we love. – Stacie
My mom was on hospice with cancer when I was 38. Daddy became ill with CHF when I was 41 and my husband was diagnosed with MS six months later. I also have a son with autism who is 23. I’m now 55. – Laurie
My son had his TBI when he was 12. He’s 25 now. – Tina
My son was diagnosed with a brain tumor/cancer and I was age 40. He was 20. He passed away this past Jan. 2, 2017. Twenty five long years of his illness. We kept him at home til the very end. – Kathy
I was 41 and have been caring for my husband for 17 years now. He has brain injury and cannot walk, talk and he eats through a G-tube. – Juracy
Age 42 for my patients. One year with my boyfriend and thank goodness we had Hospice help. He has been gone for 6 month’s. I still miss him so very much. – Susanne
I was 42 when my mom had a stroke. – Robin
I was 44 when my partner suffered a TBI after an 18 wheel truck ran a red light at 9 am. She was on her way to work…that was in1995. – Lorraine
I became a caregiver at 45. I never saw it coming. – Louis
I was 45. My daughter was 12. It takes the two of us to handle it. – Kim
I was 46 years old when I started taking care of my 52 year old husband. – Cindy
I was 46 when I started being a caregiver. – Roberta
It was 47 for me. My husband survived 20 months. (Glioblastoma average survival is only 14 months). – Melanie
I became a caregiver at 47. My husband is sick. – Lorraine
I was 48 when my wife was diagnosed with Huntington’s Disease. – Claude
My father went into hospice care & my mother has dementia. My dad is actually doing very well, but really bad memory loss. My mother often thinks I am her cousin. – Cindy
I was a caregiver from 49 to 53 for my parents. I’m still doing at 55 for my disabled husband. – Julie
My husband died 4 months ago. He was diagnosed with a brain tumor 4 years ago. – Susan
I’ve been doing it full time since then. (4years). Part time 10+ years prior. – Angela
I was 53 when I cared for my Dad and then not again until I was 65 when my husband got Alzheimer’s. – Lynne
I became a caregiver at 54…I will be 64 next week. – Annette
I became a caregiver when my 57yr husband suffered a Dbl stroke that left him completely left side paralyzed and 33% upper right brain lobe death. It is going on 5 years now. – Brenda
I became a caregiver at 55, and I’m still doing it at 61. I retired from my job to take on this new role. – Paula
We took care of my mom after my dad died. We were all over 55. – Julie
It became full-time from 56-64. – Christine
My husband had a bad stroke almost eight years ago, three weeks after he retired. He had just turned sixty. You just never know what life has in store for you! – Karen
My Mother is now 97 and five years ago I was 57 when I started taking care of her, 24/7. – Beverly
You can read all of the responses on our Facebook page.
Sometimes people don’t know the right thing to say. In fact, they put their foot in their mouths pretty often. But sometimes they say just the right thing and it makes a world of difference.
I asked our community:
- Was there a time someone said the wrong thing? What do you wish they’d said instead?
- What’s the most comforting thing someone’s said to you?
Since this is a collection with experiences from quite a few caregivers, I’ve edited their comments lightly so they fit into the format.
The WORST, absolute WORST, thing to say is “I know how you feel.” – Marj
“Don’t leave her alone!” – My mom has Alz and is nonverbal and no longer able to walk. When I take her out with me, people say things like this. It always feels like an accusation, as if I’m irresponsible or neglectful. If they were really concerned, they’d offer to watch her for me! – Lauren
“Get over it and stop looking for handouts” – A family member that has had no contact with us since he got ill said this to me. Asking for help with medications and food is not looking for handouts. We shouldn’t have to ask. I no longer speak to him, as I have no time for negative mean people in my life. – Maggie
To be honest, there isn’t much a person can say to alleviate the pain and internal turmoil of watching a loved one descend into dementia. What was least helpful to me were people repeating religious platitudes. [We all know what they are.] – Kat
My niece Megan never said “Let me know if you need help.” She just jumped in and helped by bringing over food. It’s very hard to ask for help, especially male caregivers. Megan knew that and became our Angel. – Paul
People are reluctant to believe me when I say tell them there’s no cure. Nothing. No drug. No nothing. People will ask “Is he better?” WHAT?@#$%^! Everyone wants a happy ending…can’t blame them really. – Melissa B
“Lauren, you have all that responsibility” – I found it comforting for someone to acknowledge the depth of my situation. – Lauren
“I’m making dinner and bringing it to you. What time do you get home?” – This is the most comforting thing I’ve heard in 12 years of caregiving! – Maggie
One friend – a guy, who happens to be a radiologist – upon hearing my husband’s diagnosis offered help with navigating the medical system “anytime, anywhere, just call.” I believed him, so that was about the most comforting thing anyone has said. – Melissa B
The things most helpful were not so much the kind words, or knowing that someone has us in their thoughts and prayers; but the ones that helped me deal with the realities of dementia and take the best care of my parent and myself. – Kat
I often refer people to an article in the Los Angeles Times called “How Not to Say the Wrong Thing.” Comfort in…..dump out. Simple concept. For person’s with a change in status, i.e., new diagnosis, referral to hospice, the phrase “I wish things were different,” is enough. – Marj
Not that long ago, I ran into someone who knew my mom when she was alive. It was at the grocery store. She said that I am doing a great job and that my dad is a lucky man because not many seniors have family members willing to step up like I have. It’s not an easy thing to do. I don’t get paid for what I do. My dad can be very difficult to get along with. But I promised my mom. More importantly, he is my dad. I am unable to look the other way. – Mimi
I feel like it has always validated my feelings when I hear “I have no idea how you are able to deal with ____.” It makes me uncomfortable, but it is also nice hearing that someone understands the volume and impact the situation could have on you. – Amanda
The best thing, I believe, anyone can say is, “It’s good to see you here” (now, at this time, this moment….) or “I’ve been thinking about you.” That’s nice to know.
Or “Tell me about this condition…” Wow! If more people or ANYONE did that, and really listened, that would be about THE MOST thoughtful thing one could say. – Melissa B
For the newly bereaved, I recommend, “I’m so sorry. YOU were the BEST caregiver your (whoever) could have ever wished for.” – Marj
When I lost my wife, hearing the words “She’s in a better place now” did not help. Keep it simple with the compassionate words, “I’m so sorry for your loss.” Followed by, “I’m here for you if you need me.” Then just listen, and let the griever drive the conversation. – Bob Harrison
Words of wisdom
I think what makes the words so tough is that there are no words. Pain as such is an emotional experience and trying to encapsulate those feelings in words seems impossible. But the language of kindness speaks volumes! It’s the gestures and thoughtful acts during difficult times, even when small, that speak truth to a universe that is perhaps good after all. Shining a light, even in the darkest of days… – Ashley Look
Having a parent or grandparent in a nursing home can be incredibly difficult, especially when so many of us have promised we’d keep them at home forever. So often residential care hardly feels like it reduces the amount of time we spend caregiving, with all the driving back and forth, paperwork, laundry, and endless errands.
And then there’s the day we visit mom and she has bruises on her. One of the hardest parts of dementia is that she can’t tell me what happened.
Before you panic and yank her out of the nursing home, read this:
Take it with a grain of salt
Her explanation, that is. People with dementia often mix up the details. Did the aide hit her or did she hit the aide? Remember that you can’t take her story at face value. I’m not saying to ignore her story, but look for some evidence before you make any accusations. Asking her what happened is just one step in figuring out what to do.
Was there a procedure involved?
Routine blood draws, physical therapy, and other minor medical procedures can leave bruising. Check with the nursing staff to find out what medical professionals she’s seen recently and what they’ve done that might cause bruising.
Check her medications
Some medications increase susceptibility for bruising, like blood thinners and heart disease medications. Even pain killers, antidepressants, and asthma medications can cause people to bruise easily. Some supplements, like fish oil and ginkgo, act as blood thinners and can lead to bruising.
Other medications can cause dizziness, leading to bumps and falls.
Check in with the pharmacist to see if this might be the explanation and if there’s any cause for concern.
Liver problems and other conditions can also lead to bruising easily. If nursing home staff aren’t sure where the bruising is coming from, make sure she’s checked over for health problems that might be causing it.
Bruising can also be a sign of vision or balance problems. Talk to her doctor and get her vision checked. Make sure there are grab bars installed in the nursing home and that she’s using a walker or cane if she needs to.
It might be benign
Older people tend to have delicate skin and bruise easily. This is especially true for women. The loss of fat under the skin increases someone’s risk for bruising, as does past sun damage and a host of other factors.
If you’ve ever hoisted an elderly person out of bed when they weren’t being cooperative, you can understand that it’s possible to bruise someone accidentally in the normal course of affairs, even when you’re being careful. It often doesn’t take much force to cause bruising in someone with delicate skin and frail blood vessels.
Talk to the nursing home staff to see if there have been any problems. Has she been resisting being helped with mobility? Has she been bumping into things? Has she been getting the supervision and support she requires?
It may be time to get her physical therapy to help her move around more safely or an investigation into what might be causing her to be uncooperative when getting in and out of bed.
Not only is it easier for elderly people to bruise, they take much longer to heal. A bruise that might heal in two weeks on a young person may still be there months later for someone who’s elderly. This can lead to occasional bruises adding up — and making it seem like a major cause for concern.
It might not be benign
Some dementia patients are placed in nursing care because they’re aggressive toward caregivers — they may be violent toward other patients, too.
Watch how the staff treat other patients to see if a certain staff member is handling them roughly. Make sure they’re lifting patients correctly. Improper lifting is dangerous to both the caregiver and the recipient!
Unfortunately, figuring out if this is a case of elder abuse or not can become tricky with dementia. The signs of abuse we look for — bruises, social withdrawal, confusion, depression, hygiene issues, and weight loss — are all relatively common among elderly dementia patients.
If the staff seem poorly trained or are constantly turning over, that’s a sign that things aren’t well run behind the scenes.
If you suspect abuse, the National Center on Elder Abuse can guide you through what to do.
Finding a safe nursing home
Even in the best nursing homes, where patients are safe and supervised, patients will get bruises occasionally. There will even be occasional bumps and falls.
We can’t protect our parents from everything — and I’ve certainly gotten my share of bruises from bumps I don’t remember. It happens.
But if you’re seeing a pattern of bruising or are noticing other causes for concern, look into it. The more time you spend in the nursing home with her, the better off you’ll both be.
If nothing seems amiss, bruising easily may be part of the new normal. Make sure staff are extra gentle with her. Icing and elevating bruises right away can help reduce marks. Long sleeves and long pants may help give the skin a little extra protection.
Thankfully, as long as bruising isn’t a sign of abuse or an underlying condition, it won’t cause long-term damage.
No matter how rewarding caregiving can be or how much we love the person we’re caring for, caregiving is frustrating.
Frustration just comes with the package. We’re human and caregiving inevitably involves situations and tasks that are inherently frustrating. So many of us feel guilty for losing our cool, but it happens to even the most patient caregiver, eventually.
Frustration is a daily challenge. My dad’s other 3 children make no attempt to even call him to say hello. So there’s no real break or support when my dad needs to visit the emergency room.
Because I am also my 22 year old autistic son, frustration can magnify greatly. My son struggles when he must wait for something he wants to do. Like visit a very big mall about 50 minutes from home. He also struggles a bit with sharing me with his grandpa.
Frustration, too, to eke out some time for just myself.
Frustration is and, probably be a big part of my life for the next while. – Mimi
Frustration comes up a lot when we talk about the struggles of caregiving. Dorothy, Bob, Giselle, Harriet, Judith, and Roz all talk about the frustration that results from difficult people and challenging situations, day in and day out.
What’s your biggest caregiving frustration?
My husband had a stroke four and a half years ago. He uses a wheelchair and needs assistance with any transfers. Also, his judgement is not always the best when needing to pick something up from the floor. My biggest frustration is not being able to complete a task such as folding laundry or doing dishes without having to stop and help my husband. I love him so much and understand his frustration when needing to ask for help. If I don’t respond right away, he will try to do things that are not safe. – Debbie
I’m maintaining a writing career while caring for my disabled husband. Often when I’m writing, I have to stop what I’m working on and help him. This interrupts my thoughts, my word flow, and my productivity. Still, I’m determined to keep on writing, and created a series for family caregivers. – Harriet
In the end, it’s the frustrating/bitter/sad realization that this is a path you walk alone, mostly behind closed doors. No one has the history you do. Honestly, I do not expect people to understand, even the relatives. Friends and family do the best they can, really, most of the time; but everyone, EVERYONE, has life’s curve balls to deal with. – Melissa
Not having any help and everyone second guessing everything you do. – Dennis
Lack of sleep
My biggest frustration is losing so much sleep. I never know when he will get up early in the morning and trigger the alarm. After I wake up from sleep I can’t get back to sleep knowing he is walking around needing me. – Gina
Navigating the system
The process to obtain Disability Benefits for my wife diagnosed with PSP was the most frustrating ordeal I have ever dealt with!! Every time I think about it now steam still comes out of my ears. – Paul
It’s okay to get frustrated
I don’t care what other people think. My closest friends know I love my husband. But I’m human. Actually, I’ve circled the wagons, and keep in touch with only the ones who get it. The rest? I’m polite, but I don’t really hear what they say. – Melissa
Frustration is a normal, even healthy, part of being a caregiver. How do we cope with it?
If you can, take a break. You probably can’t take the day off or even get an hour’s peace. You can hopefully step into another space for a minute to take a deep breath and clear your head.
Focus on problem solving. Is there something you can do to make a situation easier to deal with? Sometimes there isn’t. In that case, we need to learn to accept things the way they are.
Think about the big picture. If you’re frustrated with a person, be it a customer service rep or the person you’re caring for, imagine things from their perspective.
Remember it’s okay to be upset. Being frustrated doesn’t make you a bad caregiver or a bad person. It just makes you human.
Part of it requires cultivating your overall resilience. The more resilient we are, the easier we can rebalance after something throws us off.
You might also find Iris’ tips for dealing with anger or Michelle’s experience learning to forgive herself helpful.
Remember, caregiving isn’t for wimps. Take a minute to recognize how strong you are to have made it this far!
It’s a question I’m asked all the time by family caregivers:
Can I get paid to be a family caregiver?
It’s usually accompanied by qualifiers:
- I’m not trying to be greedy, but I had to quit my job to take care of my mom.
- My husband isn’t comfortable having a stranger take care of him.
- My insurance will pay for someone to take care of my disabled sister and I’m a trained medical assistant – can’t they just pay me?
Family caregivers often spend a large portion of their income – not to mention their savings – to care for their loved ones. You might even be taking unpaid leave or feel forced to quit your job to fulfill your family obligations. Family caregivers who quit their jobs lose out not only on a paycheck, but on retirement plans, pension plans, and social security benefits. Family caregivers are saving insurance companies and government agencies billions of dollars by providing care – shouldn’t there be a way to get paid something?
Unfortunately, there are only a few programs that will pay family caregivers. We know how hard you work and how much you deserve financial support, but most of the time it is not possible to be paid to be a family caregiver. Because health care differs so much, I can’t provide specific information. However, I can point you in the right direction to find some answers.
Government programs to pay caregivers
Each state and county provides different services for the Administration on Aging. Some programs will provide stipends, reimburse caregivers for supplies, offer training, and provide respite. Paying for Senior Care maintains a list of Area Agencies on Aging and Disability Resource Centers that’s searchable by state and county.
Guardians of children
Guardians of disabled children who are not their biological or adopted children can become subsidized guardians. This allows relatives to receive financial help to care for children and keep them out of foster care.
Structured Family Caregiving
In some states, family caregivers of Medicaid recipients can be paid through the Structured Family Caregiving program. In order to participate, you must be referred by your local Agency on Aging, which is typically run at the county level. The program is run by Caregiver Homes. Caregiver Homes is available in Connecticut, Massachusetts, Rhode Island, Ohio, and Indiana, and will be in other states soon.
- The person receiving care must be eligible for Medicaid and deficient in at least 3 of 5 activities of daily living: dressing, bathing, grooming, using the toilet, eating, walking, or getting in and out of bed.
- Caregivers and patients must live together.
- Stipends typically range between $900 and $1,200 a month, depending on the level of care.
- You will be assigned a registered nurse and a care manager who will meet with the caregiver and patient to develop a care plan and will provide ongoing coaching, training, and other support.
Medicaid varies by state, so contact your local Medicaid office to find out if you may qualify. If your Medicaid office isn’t responsive, the National Resource Center for Participant-Directed Services can help connect you to the state programs that allow the patient to decide how to spend their health care money – sometimes including the option to pay a family member for care.
Unfortunately, Medicare does not pay for in-home care or adult day services.
Private sources of support for family caregivers
Disease or condition specific organizations
Some private organizations will provide stipends or grants to support caregivers. Organizations who offer this each have their own requirements, so contact a social worker to find out more.
Sometimes parents will recognize the financial hardship their care causes family members and will pay their family members to care for them. This may take the form of an adjustment in the amount of inheritance or some other creative reimbursement. Sometimes relatives will pool their money to pay the primary family caregiver. It’s wise to write a caregiver contract and check with an elder care benefits planner or elder law attorney if you decide to go this route, as it can have implications on Medicaid eligibility, taxes, and inheritance.
There’s also the possibility that family members could share the cost of caregiving, so it’s not all falling on one person.
It’s important to make sure family members are in agreement. Finances can bring out the worst in families, especially during stressful times. You may consider family mediation services – the National Academy of Elder Law Attorneys can help you if you’re caring for an aging relative.
Long-term care insurance
Certain types of long-term care insurance will pay for in-home assistance, including family caregivers. These types of policies are relatively unusual and most exclude people who live in the same household from being paid. These types of plans tend to be significantly more expensive. Talk to your insurance agent to learn more.
What if none of these programs will help you?
Even if you can’t get paid to serve as a family caregiver, you may be eligible for programs that will cover adult day services, in-home support, or other ways to ease the financial burden.
Department of Welfare
Caregivers may qualify for other programs, including cash assistance, food subsidies, and medical assistance. Check with your state welfare office for more information.
Resources for those over 55
The National Council on Aging can help you find out if your loved one is eligible for financial assistance for medication, housing costs, and health care. Get started with their Benefits Checkup.
Social service organizations
There are numerous organizations that provide grants or emergency assistance to families. Many of these are specific to location, employment history, and condition. Organizations will provide grants for rent, mortgages, and utilities. Other organizations provide support for food, medication, supplies, and grants for home modifications to meet the needs of people with disabilities. Each agency has its own eligibility requirements, so you will need to search online by specific needs, contact a local social worker, or discuss it with hospital staff.
If you’re caring for a relative and provide for more than half of their basic living expenses, you may be able to claim them as a dependent on your taxes. You may also be able to deduct their medical expenses, even if you can’t claim them as dependents. Visit the IRS website or call the IRS help-line at 800-829-1040. You can also talk to an accountant about these options.
Working while serving as a caregiver
Some companies are more caregiver-friendly than others. Your company may allow you to work part-time, have flexible hours, work from home, or provide additional time off. Or they may not.
Under the Family and Medical Leave Act, eligible workers are entitled to 12 weeks of unpaid leave per year. Some companies even have employee assistance programs. Check your employee handbook to see if your company has set policies. Go over the options with your supervisor and HR before you make any big decisions.
Getting help is possible
It isn’t easy and it isn’t enough, but help is out there. Find out where other caregivers have found help and how it turned out.
Do you use one of these programs? Have you tried to enroll? Is there another program we should know about? Please let us know in the comments.
This article was originally published in September 2014. It’s been updated several times in order to reflect changes to available caregiver support programs.
So many caregiving guides make it sound like there’s plenty of help to be had, if only caregivers would ask.
We know that’s not quite how it works.
Yes, some caregivers don’t ask for help and your chances of success improve if you ask the right way, but it’s a fact that lots of our requests for help will fall on deaf ears.
Or the ears of people who really would love to help, but are too busy that day. Some people just won’t help.
Here’s the story of real caregivers who’ve gotten help, how they got it, and how it worked out.
It’s worth it to keep asking and keep searching.
I have been wanting tangible help for years. I have tried to get VA caregiver respite and they say it is a long process, so try the county. I contacted my county, but unless you are broke and nearly homeless you don’t qualify — and if the receiver can handle most ADLs, forget it.
That leaves either pay $30 an hour or hire a kid. When what we need is some help with chores and companionship, $30 an hour is best saved for other things.
In 10 years the only respite I have found was through Lifespan Respite. They offered $1000 worth of time in a voucher, but that included drive time for the caregiver and the only women who could come was an hour away. We lost two hours worth of her service, but she was great.
But that was 3 years ago. I have yet to find a way to get a break. As the caregiver, I knew I would need help. Friends are great, but I wanted a helping hand from someone who could think in advance about what I might like — because a caregiver knows.
Yesterday I had help — but it became a major annoyance. Three guys all at once felt like it was a football party not a recovery room.
I am parent and primary caregiver to my 26 year old disabled son. He was on the waiting list in our state of PA and after completing his schooling at 21, then was pulled from the waiting list and after a few months or so was approved for caregiving services in the home.
We went through 2 agencies and about 10 caregivers before coming to the conclusion that it wasn’t working for us. The caregivers were either poor in attendance, were no-shows, or actually fell asleep while on the job. We could not depend on them.
Now, I was approved back in summer 2016 to be paid to caregiver for my son. I went through the application process, job interview, training and am now an employee of a caregiver agency.
I really needed the financial support so this worked out. The only drawback is that I never receive respite. I only have my middle son to fill in for me when I need to leave the home to run errands.
The rest of extended family and father to my son has basically “checked out” of the situation. So it goes.
My son, Rob, has seizure disorder, Epilepsy and is both mentally and physically challenged. He falls into the Autism Spectrum and is officially diagnosed as developmentally delayed. He is homebound. His first seizure was at age 2 1/2. His physical body slowly deteriorated over time. He use to be able to walk and attend school and social functions until his late teenage years when his legs gave out and he couldn’t walk and eventually could not sit up.
He is mostly a happy young man with a great smile and a laugh that brightens up the room.
When I ask for help, it’s asking for driving assistance to either a haircut or the dentist. If help is not available, I just rearrange my schedule. So far, I haven’t need ‘personal’ assistance in the form of toileting or grooming or walking-type help…but it’s coming.
So, I have no ‘helpless’ experiences other than those I create in my head. I’m fortunate, as my husband’s Atypical Parkinsonism is not acute enough to warrant daily assistance.
My husband had a buddy who was a former coworker who would take him for coffee each weekday morning and sometimes on the weekends, too. He was retired and probably felt obligated to do something for him.
After my husband was released from the hospital he had outpatient and home visiting therapists and nursing. He performed well for the therapists, but didn’t follow through on his own. He had two times that he was sent to care centers near the end of 2015 and almost used his 100 days covered by Medicare because of silent aspiration pneumonia.
The county supplied a senior companion. He worked out great, he had been a CNA, knew about electronics and got a DVD and earphones set up for my husband. They got along great. My husband was against the idea of a senior companion at first, but once he met the guy he came around. The company he was working through went out of business. Before we could arrange for him to come back through a different company my husband was back in the hospital and passed away.
I asked for help and didn’t get any more times than I can get into.
People tell you to let them know what you need, but come up with all sorts of excuses when you ask for their help. No one truly understands your situation unless they’ve experienced it themselves.
My favorite way to find help is by hiring someone whose personality is a caregiver personality but who is not a CNA/Medical type caregiver. The people that I have hired this way are now friends of mine and helped my Dad get through some very tough times with his Lewy Body Dementia.
Joy Meason Intriago
I do not get any help at all in being caregiver for my dad who is 78.
Because he retired from the railroad and does get enough benefits to
support himself. However those benefits do not provide any help for me, his caregiver.
Just recently my son qualified for an IFS Waiver, which allows me to get paid to be his caregiver. However the maximum hours I get are 37 hours a month.
Some responses have been edited for grammar and clarity.
When we first become caregivers or when there’s a new emergency, we go into super hero mode. You know what I mean: you do it all, without stopping, at the same time.
Nothing can stop you, until you can’t keep it up. It’s unsustainable. You can only suck it up and forge ahead for so long before you’ll burn out.
You’re burning out
The problem is, even super heroes aren’t super heroes around the clock, day in and day out.
Taking care of someone else all the time without a break leads to anger, resentment, and sheer exhaustion. You can’t think clearly. You snap at people. You can’t connect with people. You’re so anxious you can’t sleep. You’re miserable.
You know what they need. Do you know what you need?
Take a minute to ask yourself: What are you missing? What do you have? The more specific the better.
Most of us have a few coping methods we cling to, often from childhood. They may or may not be right for the challenges caregiving presents. Caregiving is often presenting new challenges, all on top of each other. You’ll need a whole arsenal of coping methods to make it through in one piece.
Think about what you really need. What specific things are getting to you the most?
Of the things that are getting you down, which ones could possibly be changed? Even a little?
Fight decision fatigue
Caregivers get stuck with a lot of responsibility. So many of the choices we face have no good answer, leading to immense guilt and anxiety.
Decision fatigue is a real thing, and it’s exhausting. Do yourself a favor and eliminate any decisions that don’t matter. Patterns, habits, and rituals are great for this.
- Grab a few things from your closet that all match each other and fit you. Ignore the rest of your clothes and rotate these.
- Eat the same things every week. Stick with one simple grocery list. If you can, get them delivered automatically…or from a neighbor who’s going to the store anyway.
- Schedule appointments at the same times as much as possible.
- Schedule times to make phone calls, do paperwork, and other chores.
The less you have to think about chores and things that don’t really matter, the more time you can think about the things that do.
Get back control
Sure, we’re making decisions all day, but it doesn’t feel like we’re in control at all, does it?
What makes your life feel out of control? What can you do to feel like you’re back at the steering wheel?
Is someone demanding help constantly when they could really wait an hour? Set up ground rules for requests.
Is the unknowing of a lack of diagnosis driving you to your wits end? Turn to meditation or faith to learn to accept the unknown.
Has your life become a random series of chores? Set up a routine and stick with it as much as possible. Everyone works better when they’re following a routine.
Remember that caregiving is a choice. Perhaps it seems outlandish to imagine being able to walk away, but you could. What would it take? What would make you do it? Every moment you’re taking care of someone else is a moment you’re choosing to do so. You’re doing it because you want to be here, even if it’s hard.
Get in touch with you
You’re a human. Humans make mistakes, say the wrong things, and let people down. You’re going to lose your patience. That’s okay. We all do. Remember that. Other people probably have unrealistic expectations of what you should do. Let them, but remember there are limits to what you can do. You’re already going above and beyond.
Find a way to remember how proud you are of yourself. Maybe it’s journaling, a gratitude jar, or just thinking about it as you brush your teeth. A daily moment of reflection doesn’t have to be involved to be meaningful.
As a human, you still need to have an identity besides being a caregiver. Even if you barely have time for the other pieces of yourself, make that tiny bit of time. People who only take care of other people 100% of the time end up bitter, angry, and empty. This is your life, too.
You’re spending a lot of time thinking about someone else’s physical needs. Lots of caregivers neglect their own — and then die before the person they’re caring for, or become so ill they need a caregiver themselves. Stay in touch with your body, too. Go for a walk, even if it’s short. Don’t skip meals. There are lots of little tricks to stay healthy, even when things are hectic. Other caregivers are happy to share them with you.
You’ve cut out a lot of things in your life to be a caregiver. Surely there’s something caregiving related you can cut back on to make some time for yourself.
When you’re in super hero mode, everything that’s non-essential falls away. Friends and other relationships tend to get cut.
It’s fine to neglect your friends for a little bit, but in the long term it has huge consequences — for your physical and mental health.
Maybe you don’t have time to go out, but there’s always time for a quick text. Things like Facebook can help you stay involved, even if you don’t see someone regularly. It’s also a great way to let people know you could really use some company.
Adrienne found she didn’t want to talk to her old friends about caregiving. She wanted to keep her friendships as a bubble of her old, normal life. Instead, she wanted to talk to other caregivers, who better understood what she was going through. So she created this community.
It’s true — your friends might not understand what you’re going through. Those long hours in waiting rooms and hospital cafeterias are an opportunity to meet new people who get it.
But don’t let go of your old friends. Even if they’re awkward around you now, remember they have their own struggles. Invite them over for coffee, even if your house is a mess and you’re stressed out. Write them an email. Ask how they’re going and listen. You need them.
Know your strengths
None of us are good at everything.
Some of us are just not good at keeping track of bills and insurance paperwork.
Some of us have limits to our patience with other peoples emotional needs and poor behavior.
Some of us aren’t very good drivers.
You’re going to do a lot of things, but you can’t do everything. You shouldn’t do everything. Identify the things you just aren’t your strengths and find help with them.
Who will help? Social workers, librarians, and faith communities are a great start. There are community organizations that will help you with your taxes, provide free transportation, do your yard work, and provide companionship for your caree. Every community has different services, but someone you know can help you find help in your area. You can’t do this alone. And you don’t have to.
This is one of those times when Facebook can really help. Ask for something specific and you’ll have better luck.
If you’re providing 100% of the care and not sharing the burden, if something happens to you, whoever steps into your shoes will be lost. It’s not good to be irreplaceable. Other people will do things differently. They’ll be annoying to deal with. They’ll disappoint you. But it’s still worth it to get help.
People don’t feel good when they can’t contribute. Is there something your caree can do to help you? Ask them to do it. Everyone has something to give — and they feel better when they have the opportunity to share it.
Know what you need
It’s incredibly difficult to know what we need. What will make us happy? People have been studying that for millennia.
When you know what you need, you’re half way to solving the problem. Identifying a need means you can find ways to meet that need…or learn to accept that it’s going to be unmet.
Not getting what you need leads to resentment. Resentful caregivers are not good caregivers, no matter how hard they try.
The thing is, no amount of self-care will allow you to be a 24/7 caregiver for a decade without burning out. Sometimes you need a real break — a vacation from caregiving.
Lots of us are taking care of people we love. We don’t want to go on vacation without them. That’s fine. Bringing in a professional caregiver — or a cleaner, handyman, personal assistant — can free you up to have quality time with the person you love. Rather than focusing just on caring for them, you can really be with them.
The other day I was in an ER far from home. The woman in charge of triage was refusing to move forward with triage because we didn’t have insurance they’d accept.
The fact that we had insurance and had even gotten pre-approval to go to the ER wasn’t enough — she wanted us to call them back and get paperwork faxed to her. The instructions we’d gotten to pay out of pocket and submit the invoice for reimbursement meant nothing to her. She wanted a fax. But she couldn’t find the fax number.
Finally, I asked, “Is there another ER we could go to that will accept payment in cash?”
Suddenly, we could pay in cash. There was a clear procedure in place and it was no problem.
The next day, I saw the same advice in a comment here:
If I got, “Sorry, I can’t help you.” I asked who could. – Diane Bobinski
When you’re talking in circles — or worse yet, being told ‘no’ over and over again — ask who can help.
It seems obvious, but it’s so easy to forget to do in the moment.
Plenty of times the person saying “that’s not my job” knows whose job it is to help you. But so often they don’t offer up any information you don’t ask for.
Our private Facebook groups are pretty active, so you might find they take over your Facebook news feed.
Don’t worry, there’s an easy solution.
Find a post from the group that’s taking over your news feed and click on the little triangle in the upper right corner to reveal a menu.
By “unfollowing” a group, you’re still a member of the group, but posts from that group won’t appear in the news feed anymore.
In order to participate in the group conversations, you can add a shortcut. Go to the group you want to create a shortcut for. In the upper right there’s a button with “…” that will reveal a menu. Choose “pin to shortcuts.”
Now a shortcut for the group appears on the left side of your Facebook account.
When there are new posts to your group, a number will appear next to it. This way you can stay a part of the conversation without getting constant notifications or filling up your Facebook news feed!
A friend of mine in Brussels casually mentioned how she’d wanted to take a sabbatical, but the new government had changed the program. She’d hoped to take some time off to work on personal projects, but she worried about what would happen to people who relied on a sabbatical to take care of relatives. What would they do now that the program provided no financial support?
Her comment really piqued my interest — what programs are available to family caregivers in Belgium?
Belgium’s time credit system
In Belgium employees were able to take a tijdskrediet / crédit-temps or ‘time credit’ while collecting most of their regular salary. To be eligible they had to have worked full-time for two years and at least one full year for their current employer. Employees can take up to a full year off or can work half-time for slightly longer than a year. They can also work 80% of the time for up to 5 years, or longer if the employer agrees to it. At the end they would be able to get their job back or return to full-time work. Employees could do this for a maximum of three years during their working life.
The government would cover most of the cost, with the employer covering a ‘supplement.’ The employer cannot deny an employee’s request for a sabbatical without a serious business reason. In a country where the social safety net makes it expensive and difficult to reduce the workforce, sabbaticals can be a way for a company to reduce their expenses while encouraging their employees to take care of their families and pursue interests. This was also seen as a way to get people back into the workforce, as it increased the number of available temporary job opportunities.
Encouraging work/life balance
Employees who are ill, have a new child, or have an ill relative are all encouraged to take a sabbatical. The government has introduced tax incentives to encourage people to outsource household tasks, like cleaning, cooking, and childcare. This is intended to reduce stress on working women and turn unpaid work into paid career opportunities. Overtime pay must be paid to people who work over 39 hours per week. Still, many more women work part-time than men in Belgium.
The history of time credits
The time credit system was introduced in 1985, as a way to reduce unemployment and address work/life balance. Employees could interrupt their careers for family obligations, education, personal projects, or any reason at all. Employers were required to hire an unemployed person during the sabbatical, bringing many people back into the workforce.
In 2002 the law was changed so employers were no longer required to hire an unemployed person to fill the position during a sabbatical. Trade unions have generally supported the sabbatical system as long as employees were taking work reductions voluntarily.
The option to work 80% of the time has become very popular among men and women over the age of 50, who are very likely to be providing support for their own parents as well as grandchildren.
In January of 2015 the time credit system was changed so that the National Employment Office no longer covered any of the employee’s salary. Employees can still take time off for a sabbatical, but they have to do so without pay. Older persons wishing to reduce their hours indefinitely to ease into retirement must now be 60 years old.
Luckily, Belgium provides other support for the 12% of the population providing family caregiving. Of the elderly in Belgium, 82% have an informal caregiver.
Paid family caregiving
Family caregivers in Flemish Belgium are provided with allowances. The amount of financial support and eligibility criteria are different for each region. There’s also a small payment intended to cover out-of-pocket expenses, which averages 30 euros per month. Flemish Care Insurance is mandatory for all residents. In most cases, cash benefits provided are reduced if the household income is over a certain amount.
Anecdotally, because many people providing care don’t identify as caregivers, they don’t apply for financial support designed to help caregivers.
In addition to sabbaticals, family caregivers have access to:
- Palliative care leave for terminally ill parents (2 months + 1 month extension, with 750 euro/month)
- Medical assistance leave (up to 12 months, taken in 1-3 month increments, with 750 euro/month)
- Emergency leave (10-45 days/year)
Caregivers in Belgium have access to training through nonprofit organizations. There is no centralized service for respite care and counseling, although these are available to most people. Like the US, most services are designed based on the location and condition of the person receiving care.
Because 99% of the population is covered by compulsory health insurance, patients face limited health care expenses. However, these expenses can still be a serious burden on families. Home care is covered for low-income families and on a per-diem basis.
Disabled people in Belgium are given a dependence allowance and a personal assistance budget, which are meant to assist with caregiving expenses. However, these funds are used at the discretion of the care recipient. Care recipients are also eligible for an income replacement payment and other allocations.
Like caregivers in the US and Canada, caregivers in Belgium are hesitant to use the respite care available to them because of feelings of guilt, objections from the care recipient, and fears of loss of privacy.
Social Entitlement credits
Belgium worked to create a legal definition of family caregiving from 2008, passing the law in May 2014. The goal is to provide tax benefits for caregivers and social security credits for time spent providing care. This could also provide family caregivers with specific rights and workplace protections.
Thankfully, even self-employed persons in Belgium are entitled to caregiver support and sabbaticals.
Belgians are legally obligated to provide for their elders and the average nursing home cost exceeds the average pension payment.
Family caregivers in Belgium suffer from fragmented information sources and a lack of continuity in care. One survey of family caregivers in Belgium of people with mental health issues found that 1 in 4 were dissatisfied with the support they received from their workspace.
Would you like to see these programs extended to the US or Canada? Do you think they would work in another country? Have you provided care for a loved one in another country?
Things have changed a lot in the US during my grandmother’s lifetime.
My grandmother retired before I was born. Usually the people I remember as having been “old” during my childhood turn out to have been slightly older than I am now. Not so with my last remaining grandparent, who looks quite old in photos where my parents are younger than I am.
I used to tag along with my dad to her house multiple times a week, making sure everything was taken care of. She could live alone, but she needed help with little things. She’s never been a fan of children and I can’t imagine I was much help, so I’m sure no one really cared when I stopped going.
Why did I suddenly refuse to visit my grandmother? I was so angry that she knew who my sister was (the pretty one) and had not the slightest clue who I was (the nerdy one), even though my sister visited her only for required family occasions. The first time she forgot who I was, everyone brushed it off. I boycotted grandma.
It was nearly 20 years before anyone diagnosed her with dementia. The amount of help she required each week grew gradually, until it was clear she needed my father to move in with her.
When my grandmother was working age, it was unusual for a woman to work. The elderly and infirm were expected to be cared for by the wives who looked after the children. The daughters were expected to help.
Now only the wealthy can afford to survive on a single salary. Even those who could afford to have one spouse stay home often have ambitions beyond their homes. As the pay structure and societal expectations shifted, the rest of the world failed to shift to accommodate the needs of childcare and eldercare.
When Social Security was unveiled, the life expectancy of an American was 62 and payouts began at 65. Today, most people live to see 80. No wonder the system is always on the verge of collapse — it wasn’t designed for this.
More and more people rely on Medicare while fewer people pay into the system.
With many parents requiring care starting in their 60s, most people will spend more years providing eldercare than childcare. Children spend hours a day at school, elders require 24/7 care with little financial support.
They’re expected to support themselves, save for retirement, put their kids through college, and support their parents. People are collapsing under the weight of these unreasonable requirements.
As soon as I was living on my own, my parents eldercare responsibilities intensified. And now they’re providing childcare for their grandkids while still taking care of their own parents. So much for an empty nest. While the other elders in our family have passed away, grandma still needs 24/7 care.
My parents have been fortunate: they’ve made it through the financial and emotional gauntlet of eldercare with their own lives largely intact. They had jobs that provided the flexibility to provide eldercare, often for multiple people at a time, without having to give up an income. So many haven’t.
Our lives have changed. It’s time our system for eldercare changes, too.
We have a huge, vibrant community of caregivers. People are experiencing a whole range of emotions about the changes happening to the health insurance landscape in the US.
Regardless of who you voted for (if you voted), I bet you want affordable, quality health care for yourself and your family. We all have that in common.
In fact, as caregivers, we have a lot in common, despite how different we might be outside of the caregiving world.
We can’t support each other if we’re busy tearing each other down.
The Caregiver Space isn’t an organization with a staff of writers and social workers and web developers. It’s a community. This is a place by caregivers, for caregivers. The articles are written by you. The support groups are run by you. You answer the questions people post in the forums. You decide what this community looks like…or if we have a community at all.
Millions of caregivers means millions of opinions
We have less than a quarter of a million people in our community at The Caregiver Space, which is a tiny fraction of the caregivers in the US…and an even tinier fraction of caregivers around the world.
There are over 34 million informal caregivers in the US. There are several million professional caregivers in the US. And there are many millions of other English speaking caregivers around the world.
That’s a lot of different people, in different situations, with different hopes and dreams and ideals.
No matter how different we all are, there’s one thing that binds us together: caregiving.
Because there are some things only another caregiver can understand.
Are politics on your mind?
The cool thing about the time when a bill is being written is that it’s an opportunity to contact our representatives and ask for the things we need as caregivers.
If you’re worried about what’s going to happen, call your representatives and let them know. Facebook posts don’t change things.
If you’re happy with the new changes, call your representatives and let them know. They would love to hear that.
The thing is, no politician has been talking about how they’re going to help caregivers. With all the talk about patients and healthcare, we’re still not even on their radar. We have to ask for the help we need or we’ll never get it.
It doesn’t matter how you voted, or if you voted. At The Caregiver Space we believe all caregivers deserve support.
Are you thinking it’s time to schedule a family meeting to talk about your aging parents?
Don’t do it.
I’m really comfortable talking about caregiving and I love my family, but the thought of sitting down with them all at once to discuss it stresses me out.
Would you want your entire extended family to gather together so they could plan out your impending death? That sounds awful. Let’s save family gatherings for fun stuff.
Start the conversation
You don’t need a special occasion to talk about aging.
The sooner you start talking about aging, the better it is for everyone. The longer the conversation is delayed, the more it’s going to feel like a big, scary problem. Aging isn’t a problem. Enough of us need help, even temporarily, long before we’re getting AARP in the mail that it’s good to have these discussions with everyone we care about.
First, write down all the questions you have for your parents. Maybe you want to ask them:
- What will you do if you need help every day?
- How much can your family help you?
- What would you do if you couldn’t stay in your own home?
- How can you adapt your home to make it safer?
- How can we pay for medical care?
- How can we pay for home health care?
- How can we pay for nursing care?
- What’s most important to you if you become very ill?
- Who do you want to make decisions for you if necessary?
Then, answer all of these questions for yourself. What would you want if you were ill or injured?
Look over your insurance policies, your medical coverage, your savings, and your bills. Fill out a living will. Think about what your family would do without you.
Then think about how you should approach these topics with your parents.
Perhaps the easiest way to start the conversation is to talk about yourself. I’m a millennial, but I’ve given both of my parents copies of my living will. Calling my parents to discuss insurance plans elicits information on their own plans and concerns. My debates on whether remodeling my bathroom to conform with universal design surely get them to look at their own bathrooms with a critical eye.
Know what matters
The idea isn’t to get ready for your parents to die, it’s about knowing what they value the most. What pieces of their identity are most crucial? What gives their life meaning? These are the sorts of things parents are probably happy to talk about.
The stronger your relationship and the better you know each other, the easier it is to talk about what they’d want their lives to be like if they were to be seriously ill or disabled.
These aren’t things most people think about. Sometimes people can’t answer because they have no idea what they want. You have to talk it through a couple times before you can stick a medical directive in front of someone and expect them to fill it out.
These conversations are so important. My mother hasn’t written out a living will, but we’ve talked about enough things over the years that I feel confident that if something happened, I could make the choice she’d want me to make for her.
Plan from the beginning
We spend so much time planning our retirement, but people will refuse to talk about picking a home where they can age in place or sketching out a long-term care plan. Not talking about these things doesn’t make them go away, it just makes it scarier when it does happen.
When you evaluate a new place to live, think about how you’d be able to navigate it on crutches, with a walker, or in a wheelchair. When looking for a new job, think about the medical and disability coverage. How much is enough to save for retirement care? Ask your parents how they navigated these decisions as each of them comes up.
Don’t make it awkward
Any time someone tells me “we need to talk” I feel a little panicky. Don’t make it more awkward then it has to be.
There are so many great articles, podcasts, books, and movies to prompt deep conversations about what matters to someone. We talk about what we’d do if we won the lottery, we can learn to talk about things that are more likely the same way.
Then you’re talking about this amazing book you just read, not planning their demise.
If you’re really ready to get creative, plenty of historic cemeteries offer tours. Quite a few of them are gorgeous places with fascinating stories. If your family shares a certain type of humor, bringing it up while standing in a crypt is one way to make the conversation unavoidable.
Resilience isn’t being impervious to hard times, it’s the ability to recover from difficulties.
When you’re caring for someone who verbally abusive or requires every moment of your attention, it’s incredibly emotionally draining. It’s unrealistic to try to not be offended or learn to live without alone time. It’s realistic to learn how to recover emotionally and regain your balance.
Assess the situation
Take a moment to think of how you really feel. If you’re upset, what does ‘upset’ break down to? Disappointment? Frustration? Longing for appreciation?
Think about how you feel and why you feel that way and you might just be able to make the situation a little easier to improve.
Reframe the situation
People usually aren’t being inconsiderate because of something about you, it’s usually about them. Someone snaps at you because they’re over-tired. Someone is late because they overslept. Someone lets you down because they’re caught up in their own needs.
Peoples actions aren’t always a reflection of how they really care about you or value your help.
We tend to overestimate people’s physical needs. It’s okay to push someone to try to be more self-sufficient — or a little patient — if it’s not going to put them in danger.
Agreeing to do things you can’t possibly do or taking on more than you can handle isn’t necessarily better than saying “no” with love.
Accept your own abilities
No matter how hard you try, you’ll screw up. You’ll let people down. You’ll make mistakes. You’ll hurt people’s feelings. That doesn’t mean you’re a bad person, it just means your a person.
When you start to feel guilty about something, ask yourself if it’s really something you were responsible for. It’s okay to feel sad about how things turned out, but there’s no need to take on the blame.
Even if you were responsible for something bad that happened, remember that we all do things we regret. Think about what lessons you can learn and forgive yourself.
There’s no need to go it alone. We all feel alone sometimes, but there are things we can do to lessen that. Connect with other caregivers, online or in person, and reach out to your social network.
You deserve support, encouragement, and understanding.
Remember why you’re here
Some days you probably want to walk out the door and never come back. But you don’t. No one is really forcing you to stay, as much as it may feel that way. What keeps you there?
Remembering the reasons you have to stay — and reminding yourself that it’s a choice — can help you feel in control of the situation.
Many of our community members have had to quit their jobs or retire early in order to serve as a family caregiver. Many more struggle to juggle caregiving and their career.
Working family caregivers often manage to stay at work by arranging for a flexible schedule, cutting back their hours, switching to a different type of job, or arranging to work from home. Other caregivers find themselves becoming entrepreneurs developing tools and products for other caregivers.
When Rick’s parents couldn’t live independently any longer and needed his support, at first he was able to continue working full time. Eventually, he realized this wasn’t going to work long-term, especially as their health declined there were more jobs – outside of his own job – to do and there weren’t enough hours in the day to both work and fulfill his responsibilities to his parents. He felt torn between two important priorities — and he’d need an income in order to support himself and care for his parents.
Being hesitant to share such personal information with his supervisor at work, Rick was nervous to ask about cutting back his hours. There was some inner turmoil, but something had to be done. Luckily, his employer was supportive and agreed to let him work three days a week, so he could devote time to support his parents. Now a number of years after the fact, Rick realizes that, considering the options, an employer is often wiser to work with a current employee needed caregiving time off rather than try to replace that valued employee and go through the time and expense of advertising, screening resumes, interviewing candidates, and training.
A part-time schedule provided Rick increased scheduling flexibility, allowed him to set up his parents’ medical appointments for his days off, and reduced the number of phone calls he was forced to take and/or make at the office on his parent’s behalf. Cutting back his hours made it easier to make work his full priority when he was in the office. Having a little bit less on his plate really reduced the stress he was under, heightened his concentration level, and allowed him to feel more productive and focused. Being able to continue making an income, even if it was reduced, gave him a real peace of mind.
In a way, his time at work became a type of respite. His life may have been all about caregiving at home, but he didn’t talk to his coworkers much about caregiving, allowing him to maintain another side to his identity. As another means of personal escape, Rick also took writing classes during this time. Caregiving can be all consuming, but work and school kept him firmly rooted in the career world and creative fields.
Rick’s dad was able to go to a day program for people with Alzheimer’s. This gave his mom some time for herself. Rick was caring for both of his parents, but his mom was also a caregiver to her husband, despite her illness. It was important to make sure she could relax, sleep, and take care of herself so she wasn’t exhausted by caregiving.
In addition to the day program, Rick used driving services to make sure his parents got safely to appointments when they could manage on their own. Arranging transportation was still time consuming, but it helped him stay at work.
He worked part-time for nearly two years. One huge benefit to working part-time was being able to keep his foot in the door at work. His career wasn’t derailed by a long absence. Continuing on a part-time schedule made it much easier for him to transition back to full-time.
Rick Lauber is the author of The Successful Caregiver’s Guide and the Caregiver’s Guide for Canadians.
Adrienne and Richard at the 1st Annual National Caregiving Conference in Chicago
MSNBC news anchor Richard Lui helps take care of his father. The hiccup is that Richard lives in New York and his parents are in San Fancisco!
He’s been splitting his time between the two coasts since his father was diagnosed with Alzheimer’s five years ago. When his dad couldn’t remember his sibling’s names, they knew something was wrong.
Richard sat down with his boss and explained the situation early on. His boss is also a long-distance caregiver, so she understands how important it is for people to be devoted to both our careers and our families. He now serves as a news anchor on the weekends, making diving his time do-able, although certainly not easy.
Even as a long-distance caregiver, Richard feels it’s incredibly important to stay overnight at his parents’ home. He needs to hear the bumps in the night in order to really understand what’s going on — and experience both the difficult and heartwarming moments of caregiving.
His mom doesn’t consider herself a caregiver, although she’s the one who takes care of her husband day in and day out. She’d never ask for help, but Richard is honored to be there for his parents.
Richard’s father was a pastor, his mother a teacher. His father has always been a very loving, happy man. He isn’t always sure who Richard is, but he knows that he loves him. As Alzheimer’s changes his father, Richard feels the core of his father’s identity is being revealed. He views it as a type of rebirth.
While Richard’s strong faith is guiding his family through this journey, he knows the times ahead will be both challenging and beautiful.
So many of our community members are in this situation. Here’s what a few of them have to say…
I was working full-time when he was diagnosed and he ws retired. I was able to continue working for 1 1/2 years, but it became increasingly harder. My employer made me an incredibly generous offer of part-time work from home and I was able to do that until I retired in June 2015. I still wasn’t 65, but made it work. Those 3 years were wonderful because I was still able to get out to work some of the time and keep up my professional relationships and work friendships. – Deb
I have [professional] caregivers during the day, so I can work. – Cathy
I recently returned to work outside of home after being a stay-at-home/work-at-home mom for 10 years. As the caregiver to my partner, the main breadwinner for our family and the one who handles most household and family-related tasks, I often find myself feeling overwhelmed, frustrated, resentful, and hopeless. – Melissa
I feel part wife / part maid/ part cook / and I work part time. – Susan
I work full time at an office. She is on longterm disability and is alone all day. I don’t make much plans without her because time together is precious. – Lesley
I am not only my mother’s primary live-in caregiver, but we also have a paid caregiver from an agency for about 4 hours a day, 3 days a week. My mother has a fixed income and I have only been able to work part-time since she can’t be left alone for very long. – Laurel
I have to do everything plus work full time. – John
I take care of my husband, whose made great strides in the past year, so he needs me less and less. However, it’s still a lot to handle and I’ve had to take a lot of time off of work to take care of him, which has been a financial burden and not great for my career. – Allison
I cared for my parents from 2012 until July 2015. For those years i was going at 90 miles an hour,working taking care of parents and also trying to have a life with my husband. Then after July 2015, everything stopped. I no longer had my full-time job, mother is in the nursing home and dad is gone. All the friends are still working or have not kept in contact. I tried to go back to work and was told I would have to start at minimum wage and without health insurance! I was there for 12 years. – Lorrie
When my husband got hurt I worked a full time job and also tried to take care of him and believe it or not; I did take care of him and I did a very good job of it. My husband was on tube feeding and could not talk or walk, but when he left the hospital he could talk and 6 months after his accident he could also eat. Yes, we are battling new problems now, but he and I make it together. – Sylvia
I work full-time and through the Advantage Care program, my husband has a bath aide that comes to assist him Monday-Friday. come home from work expecting a,b,& c to be completed and most times only a is done. It is very frustrating for me but my husband and I can never come to agreement about it. – Tina
I have always had to work to support us so I have had specialized day cares, day programs or sometimes in-home staff to manage care her while I work. After work, the real work begins. The doors close on me and I become Super-Mom, Legal Guardian, Psychiatric Nurse, chief researcher, housekeeper, cook, personal care attendant, program manager, organizer. There is no day off, no outings, no friends stopping by. I don’t ever get sick leave and use vacation time to keep my income at a manageable level when I spend too much time at her doctor’s appointments and hunting resources. It’s an absolute grind. I work strange hours, take work home, work Saturdays. Whatever it takes not to get fired. – Cynthia
I care for my husband who has had two TBI’s. He is totally dependent on me for everything. I am lucky enough to work a full time job from home while taking care of him. I rarely can leave my home as it is difficult taking my husband places for many reasons and I cannot leave him alone because of his cognitive deficits. – Barbara
I work full time, care for my sister three nights per week, and manage all of the aspects of her life the rest of the time. – Wendy
I do my best trying to hold this whole thing together, but it seems to be spinning out of control with no end in sight. I do have two employees that stay with my wife so I can work, my mother helps out as well. My wife suffered severe brain injury. Sometimes I relate my situation to the movie ground hog day. Each day we start over: I answer the same questions again, I go over the normal routine things that have to done every day. I think my wife no longer comprehends time. My daughter has started college and is no longer here regularly. I always was the working man that could handle all the load put on me. There is no break from this load and I am getting tired. – Keith
I cannot work the hours I once did because I have to care for my wife. She has a type of cancer that comes back, often fatally. I read the internet and see that she probably has not a lot of time. Of course, her doctor is silent. If I am to be her caregiver (there is no one else) I think I must give up my business. So I have to decide when. If I put my practice up for sale soon, my wife will be very upset. – Peter
Some comments have been lightly edited for clarity
Here are some tips for finding a job that allows you to work remotely and how to actually get work done at home while caregiving.
If you need to leave your job to provide full-time care, check out these programs that pay family caregivers to see if you qualify. Our community can vouch that these programs are real, although they fall short of what we need and far too many people don’t meet the requirements.
I don’t need to tell you how expensive caregiving is.
I won’t claim that tax breaks for caregivers are enough to really lessen the financial squeeze. Every little bit helps, though.
A tax deduction lowers the amount of taxable income you have. If you make $30k a year and have $5k in deductions, you only owe taxes on $25k.
A tax credit reduces the amount of taxes you owe. If you owe $5k in taxes and have a tax credit for $1,200, you will only have to pay $3,800 in taxes.
If you’re self employed, there are other considerations, too.
Who’s a dependent?
Generally to be your dependent, you must provide at least half of their financial support and they need to be either related to you or have lived with you for a full year.
If several family members provide half or more of the support, you must choose which family member will claim them as a dependent. You’ll need to file a mutual support declaration, form 2120. A person can only be claimed as a dependent by a single tax payer.
Not sure if the person you care for is a dependent in the eyes of the IRS? Find out here.
Payments your caree makes to you
If you take care of a family member and they give you money to help with household expenses, you don’t need to pay taxes on this. This is not considered income by the IRS. It does, however, count as support in determining if your family member is a dependent for tax purposes.
If you cash a family member’s social security benefits and use them to pay for their care, you don’t pay income tax on them. It’s still considered their income.
Medical and dental deductions
If you itemize your tax deductions on Schedule A, you can deduct medical expenses for you, your spouse, and your dependents.
In order for medical expenses to be tax deductible, they have to total more than 10% of your adjusted gross income (AGI). If you or your spouse is 65+, they have to total more than 7.5% of your AGI.
How much can you deduct
You can only deduct expenses over the allowable amount. If you’re 32, your AGI is $35,000, and you have $7,510 in medical expenses, here’s how the math would look:
35,000 x .10 = D 7,510 – D = medical expense deduction
35,000 x .10 = 3,500 7,510 – 3,500 = 4,010
You would be able to deduct $4,010 of medical expenses on your taxes.
What can you deduct?
- Payments and co-payments to doctors, dentists, surgeons, chiropractors, psychiatrists, psychologists, and nontraditional medical practitioners
- Payments for in-hospital or residential care, including the cost of meals and lodging
- Rehabilitation, therapeutic, preventative, and personal care services for people who are chronically ill who need support for ADLs
- The cost of eyeglasses, contact lenses, hearing aids, false teeth, crutches, wheelchairs, and guide dogs
- The cost of prescription drugs and insulin
- Medically necessary home improvements
- Special medical equipment you have installed in your home (must be adjusted based on any increase in your home value)
- Handicap accessible vans or vehicle adaptations
- Payments for transportation to and from medical care appointments (including taxi fare, standard mileage, tolls, and parking)
- Payments made for insurance premiums for policies covering medical and long-term care.
- Medically required food
- The cost of attending medical conferences related to a chronic disease you, your spouse, or dependents have (but not meals and lodging, only admission and transportation)
- Treatment for alcohol and drug addiction and smoking cessation
- The cost of medical weight loss programs if it’s to treat a specific condition diagnosed by your doctor
What can’t you deduct?
- Anything your employer or insurance reimbursed you for
- Funeral expenses
- Over-the-counter medicines
- Health club fees
- Diet food
- Toiletries and cosmetics
- Costs of medical tourism (but the procedure itself is allowed)
- Most cosmetic surgery
- Non-prescription nicotine gum or patches
You can only deduct medical expenses in the tax year they were paid. You can get more specific information from the IRS.
Child and dependent care tax credit
The federal government and more than half of the states provide tax credits for the expense of home care or adult day care. This credit is up to 35% of qualifying expenses, based on your AGI, and is filed on form 2441. You must name the care provider on form W10.
Any money paid to your spouse, the parent of the qualifying person, any of your dependents, or anyone under the age of 19 is not eligible.
You cannot claim this tax credit if you’re married filing separately.
If you pay an individual, you may be required to pay social security, Medicare taxes, and unemployment taxes if you are considered a household employer. You cannot claim expenses for anyone you paid ‘under the table.’
Most states allow you to deduct a percentage of your federal tax credit from your state taxes. Check to see if your state provides a tax credit for dependent care.
If they’re not a dependent
Even if someone isn’t considered your dependent, they can still claim their own medical expenses on their tax return.
Elderly and disabled tax credit
This credit is for people who are elderly or disabled and file their own taxes (not as your dependent). If someone 65+ or who is disabled (and any age) has an AGI lower than the required threshold, they can get the elderly and disabled tax credit. This goes on Schedule R.
Few people expect helping a family member to require them to become a bit of a tax expert, but many of us find ourselves navigating major financial decisions.
Your real estate attorney or financial advisor may not offer up information about the tax breaks you’re due as a family caregiver. Asking them if you qualify can save you thousands of dollars of taxes you don’t need to pay!
If you’re about to sell your home or the home of a family member because of their health, read this first and talk to your real estate lawyer and accountant.
We also have tips to share on how to get a home ready to sell. Many caregivers find themselves in charge of selling houses that haven’t gotten a face-life in a while and we need to get the best price for it that we can!
The capital gains tax exclusion
Many people are aware of the capital gains tax exclusion on your primary residence. If you’ve lived in your home for 2 out of the 5 years before you sell it, you don’t owe taxes on the first $250k of capital gains. If you’re married, that number jumps to $500k. That means if your home sells for more than what you bought it for, you don’t owe any taxes on the first $250k or $500k of profits.
Any money you spent increasing the value of the home –like an addition or upgrades, but not routine maintenance — counts toward the original price you paid. So, if you bought a home for $100k, spent $25k in renovations, and sold it for $250k, the IRS sees $125k as the price you paid for the home and you get $125k in tax-free profit.
If you own your home with someone you aren’t married to, you can each claim the $250k tax exemption, for a total of $500k, as long as you both qualify.
You can only use this capital gains tax exemption on your primary residence once in any two year period. However, this requirement is waived if you move twice in two years because of a change of employment, health, or other unforeseen circumstances.
This tax exempt status is incredibly important for everyday Americans who own their home. It helps families support themselves in retirement, pay for college, cover major health care expenses, and climb up the economic ladder.
What if you don’t meet the requirements?
There are many reasons why you may buy a home and have to sell it before you’ve lived in it for two full years. The IRS isn’t known for being a caring institution, but it does try to help family caregivers who need to move. That’s why they waive the requirements if you have to move because of a change of employment, health, or other unforeseen circumstances.
The IRS will grant you a reduced tax exclusion for quite a few caregiving related reasons.
You qualify for a reduced capital gains tax exemption if:
- You can no longer afford to stay in your home because your caregiving has required you to cut back your hours, quit your job, or resulted in you losing your job.
- If you’ve gotten a job transfer or taken a new job to be closer to a loved one who needs support. This generally needs to be more than 50 miles from your old home.
- Your home is not suitable for a family member because of their disability.
- A family member needs to move in with you for health reasons and your home is not large enough to accommodate them.
- If you moved to be closer to a treatment facility for yourself or a family member.
- If the climate of the area you lived was not suitable for a family member’s health.
- Anyone in your household has passed away.
- Anyone in your household has lost their source of income.
- You and your spouse get divorced.
- You’re forced to move because neighbors object to a family member’s mental or physical disabilities.
- A family member requires a service animal and your condo prohibits animals.
A family member, in this case, is your spouse, any children or step-children who live with you, a co-owner of the home, anyone who lives with you, a parent or step-parent, grandparent, grandchild, sibling or step-sibling, your in-laws (including siblings), aunts or uncles, nieces or nephews, and cousins.
If you’re selling a family member’s home for them, they can qualify for a partial capital gains tax exclusion if:
- They need to move into a residential care facility for physical or mental health reasons and have lived in their home for one full year.
- They have become disabled and their home is not accessible.
- Their neighbors object to their mental or physical health issues.
- They can no longer afford their home because they’ve lost their income or their income has been reduced.
- Someone in their household has passed away.
- They’ve gotten divorced and can no longer afford their home.
- They require a service animal and their condo prohibits animals.
You’ll want to get a letter from your doctor to support your need to sell the home in case you’re audited.
If the home owner requires residential care
If your spouse or another family member owns the home you live in, they can include any time they were living in a licensed assisted-care facility as part of the two years, as long as they lived in the home for a year in the 5 years before the sale. If your parent buys a home and lives in it for a year before having a health issue that requires you to place them in a nursing home, they can claim the tax exemption as long as you sell the home within 4 years of when they’re moved to residential care.
If your spouse has died
If you’re selling your home because your spouse has passed away, you can claim any period of time your spouse has owned and lived in the home as if you had lived there and owned it, too. So if you were married less than two years ago and moved into a home your new spouse had owned and lived in for more than two years, you can claim the full capital gains tax exclusion when you sell the home.
If you sell the home the year your spouse passed away, you can file your taxes jointly with your deceased spouse and claim the full $500k exclusion. If you wait and sell the home in a future year, you can only claim your $250k exclusion.
What’s the reduced exemption?
The reduced capital gains tax exemption on your primary residence is determined by a formula.
Maximum capital gains tax exclusion multiplied by the number of days divided by 730
The maximum exclusion is either $250k (if you’re single) or $500k (if you’re married).
The number of days is:
- the number of days you owned the home and it was your primary residence
- the number of days you used the home as your primary residence
- the number of days between when you used the capital gains tax exclusion for a prior home sale and the date of the current sale
You use whichever of the three options is the fewest days.
730 is the number of days in two years.
Let’s say you and your spouse bought a home and a year and a half later, your sister-in-law is in an accident and needs your support. You and your spouse decide to sell your home and buy a new home that’s accessible for her needs. You’d be eligible for a partial capital gains tax exclusion. The math would look like this:
500,000 x 547.5 / 730
273,750,000 / 730
In this instance, you won’t owe taxes on the first $375k of proceeds from the sale of your home.
As America becomes more and more fractured, caregiving is one thing that can bring us together. The burden of caregiving is inescapable.
Rural, urban, suburban, caregiving cuts across geographic divides. No political affiliation is immune to illness, disability, or aging.
No amount of money can insulate you from the stress of caregiving. Even the wealthiest worry about the cost of medical care and support.
We’re not going to shy away from talking about the issues that affect our lives: health insurance, medical costs, access to treatment, and the lack of support for caregivers. Every time we share articles about these things that we all deal with every day we get angry comments from people who aren’t active members of the community. We’re not going to be silenced by trolls.
Our goal is to support caregivers. Always. That includes asking politicians to support caregivers.
We’re not taking sides because there is no “other side.”
There is no political party in America that is against healthcare or caregiving. Everyone wants their families to be taken care of. It’s human instinct to take care of the people we love.
The community on The Caregiver Space has members who’ve voted differently. It doesn’t matter. We all share the desire to see caregivers supported. We share the desire to support each other. Everyone on this site deserves your support.
No politician in America would look you in the eye and say what you do isn’t important. Everyone agrees that caregiving is vital to keep our families together and our economy functioning. Caregivers play an essential role in America — let’s get the support we need and deserve.
Let’s come together and ask that every political platform include support for caregivers.