As caregivers, we find ourselves simultaneously impossibly busy and spending lots of time waiting around. We’re exhausted, but then we’re up all night staring at the ceiling.
What’s keeping you up these days?
All the work that needs to be done to the house. I’m in charge of finding reliable tradespeople too. I must maintain a safe environment. Always a monkey on my back. – EO
Safety of those I love. I am having difficulty with that since my husbands accident. – TW
I wanted to go home for my brother’s memorial service. It’s the first loss in our family circle. He was the youngest. – JS
How I can be a better father to my three special needs boys. I fret over it so much I get LOST in the pages of this here book cuz this is the only place in my reality I can run too without leaving my sons. I can’t leave my boys but they deserve better than a distracted overwhelmed sperm donor. They need their daddy. I feel guilty AF but I can’t stop. How do I become a better less distracted daddy? – NS
Wishing I had more happiness. Since my sons’s injury that happiness factor has disappeared–my personal happiness; my son’s happiness–the fact that my son’s friends stopped coming to visit. – DA
I’m giving birth any day now and I’m so terrified. The plans of getting my two little ones somewhere quickly is bothering me, my dogs having a place to go is bothering me, how my delivery is gonna go is really bothering me… Just so much I’m worried about. – MP
My daughter’s upcoming surgery to put a g-tube in. I’m the queen of over thinking! – DC
His next hospital stay 😢 The parking fee is 15$ a day! His last stay was 13 days=$165! His fixed income SSD cannot support us as it is now! I’m his 24/7 caretaker! 3 of his meds are mostly covered by NKF (kidney x 2009)! I’m not allowed an income or coverage drops! 😢 – RM
How do i make my house handicap assemble for my husband with no money. – SL
How I’m ever going to be able to cope with living with my Moms dog since bringing Mom to our home. I am not a dog person and it’s not going well. – JS
My husband was ill, for almost 20 years, before he passed. He needed constant care, and I was working, full time, as well as caring, for him. Two of our adult sons moved, with us, to another city, about an hour from our home town, so that we would be able to better care for him, and get him to routine dialysis and medical appointments. After my husband’s death, my sons and I stayed together, while they looked for better jobs, as we decided to stay in our new place. It was a sad, and confusing time, for us, as my husband passed, only one month after we moved here. I decided to call Dr. Laura, for advice, on how to move forward. I said, on live radio, that I was a widow, living with my adult kids, in my home. In literally, 15 seconds, she ripped me a new one, yelling at me, telling me I was the reason this country is so bad, and stated that I must not have read any of her books. She screamed, then hung up on me. My sons work, we remained together, to support each other, and I, personally couldn’t afford to live, on my own. I feel horrible and guilty, for being a rotten parent. I constantly hear that woman yelling at me. – LR
I wonder why me, being the oldest if 6 kids is the only care taker of my 85 year old mom. One is dead. One is who knows where. One is an alcoholic. The youngest 2 live 400 miles away and seen to think they are doing something great by visiting every 4 months. I’m just stinking tired. I’m nearly 65 yo. The 2 youngest are 13 and 15 years younger then me. They work, but do not have children. – DK
I tend to over think everything But right now I am overthinking what will happen to my son who happens to be disabled when my husband and I are no longer here. – CV
How I have no life and I feel selfish thinking this. Mom reared two children by herself. I should be able to take care of her and not complain. More overthinking is about how no matter how much I do for her, it is not enough. Last, what it will be like without her. – CW
Money, how am I going to pay the bills. – DA
What I need to do, clean, organize (including my to do list) as well as getting a new attorney after much $$$ was spent on one who was supposed to be the best in elder law and really did not do a good job for our family situation. – RR
EVERYTHING! Work, paying bills, auto repair, sitter service, the silly things mom does, maintaining the house and lawn, pets, shopping for necessities, taking time for a vacation, my own rest time and sleep. The list goes on, but it is overthinking about everything. Sleep. What’s that? – BG
My career and living arrangements right now. Been getting my life back together after caregiving for my mother. – AG
What to do with the house, how to get mom to go to adult day care, or how to pay for caregivers since I have nothing, how to put her in a home, or whatever… it’s endless. No decisions regarding me. Must always think about her. – GE
Everything too. I’m feeling sad that my dad was sad thinking about how my mom has passed. Seven years ago now, but to him it feels like last year. 😢 – LG
I survived my lower back surgery. Rehab for the next six months. Now what do I do? I can’t lift more than 10 pounds. I’ve been a CNA all my adult life. – DA
How I can earn enough to cover mom’s medical and daily expenses. How I’m probably not doing enough even if I feel I’m perpetually exhausted. – RR
If my mom passed, I would be so ashamed of this house. Hard trying to find the time to do it. Sounds shallow, but the truth. – PC
How to go to the ER alone without my dad, but still make certain he’s safe w/o risking my own health. – BS
My mom is having the longest episode of atrial flutter that she’s ever had outside a hospital. I’m monitoring her, but scared. – NL
What do I not overthink is a better question. Some days I can’t even come up with a dinner idea cause I overthink what would be easier, better, quicker. – AH
Whether or not I’ve done everything I could to prevent my mom from dying. 😞 – AM
What a horrible person I’ve become! 😕 – SG
People that are just plain selfish and care more about themselves. – LF
My future.. am I going to end up as Wal-Mart greeter cause of no job or skills in 8 yrs… lacking education and socializing. Being a caregiver is taking a toll on my health. – DB
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!!!!
Family caregivers find themselves needing to know everything from the finer details of drug interactions to how to empty storage units.
Here’s what our members wish they’d gotten training and information about:
What are the rights of patients and caregivers?
I would like to know what rights that I have in regard to my daughter and her dayhab programs and her living arrangements. I feel like it doesn’t matter what I say or do and nothing can be done about things that I feel are not in her best interest. Please point me in the direction of lawyers or an agency that can help people with disabilities. – Dorothy
What can be done when residential facilities aren’t properly staffed, trained, and supervised?
How does the law protect people when probate hasn’t been carried out correctly?
Legal options such as guardianship, medical power of attorney, advanced mental health directives, special needs trusts, etc. – Kim
What health insurance will cover caregivers who don’t qualify for Medicare/Medicaid, but can’t afford coverage under the ACA?
How to get help when I’m beyond exhausted. What programs are available to us, in Texas! I don’t have the time or funds to jump through any more red tape government hoops! – Regina
What programs support family caregivers who’ve retired early or taken years off of work who now can’t afford to retire?
Available tax credits — I didn’t know I could claim my parents on my taxes since I was their full time caregiver. – Lorne
How can caregivers help people with mental illness have a clearer view of reality?
How to master helping people feel relaxed about their anxieties as they age. – Kathleen
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
Time with my mom. I lost her a week ago. – Lisa
Wish we could just stop time…To watch my kid’s deteriorate before my eyes w/this awful muscle-wasting disease…It truly goes too fast and is heartbreaking. I wish they could have time off from their disease that still has no cure, but it doesn’t take a day off. – Jennifer
Family. I have family but I wish we were all closer to one another to help each other. So maybe I should say I wish I had more family time! My husband and I are in Hawaii and all the family is back on the mainland now. I miss my children and grand children so much. – Theresa
Hours in the day, patience, sleep, and free time for me. – Amy
Time to myself I work and been coming to the nursing home every night for my mother for the last 9 years. – Dee
Time: I actually have lots of it but it’s chopped into almost unusable, unpredictable moments. Then cash with enough of which I can buy more time. Then…well you know… – Patrick
TIME FOR MYSELF!! And I don’t mean time that I can sit down and still be doing other things like filling out forms, etc. I mean doing what I want to do for the sole benefit of ME. It’s very rare I have that opportunity. I’m always doing something for someone. – Danielle
More time with my husband before ALZ completely steals him away. – Kimberly
Time alone with my husband – we need to get away once in awhile. – Valerie
I wish I had had more time with my husband before Alzheimer’s took him from me. – Joy
Time and energy! As well as for other to have more compassion and empathy towards those who are ill and those whom are their care givers. – Jessica
Time with friends and family to share fun times together. – Kathy
Financial & Practical Support
Cash…Then I could get things DONE! After all that is finished, I’d take some time off and get away…a little vacation maybe? – Donna
A sitter for my elderly dad so I can go visit my husband in the nursing home. – Judy
it’s hard not being able to work and need so many things…it would make the process much easier not having to worry about health and bills. – Venus
Programs where we live…we live in Dothan AL and because my daughter is not mentally challenged there is NOTHING at all that she qualifies for…she literally spends all day every day on her tablet…its so sad! – Laura
Money! Enough to take the pressure off and to feel secure (in so far as that’s possible) every time the car breaks down and the rent goes up and the supplies go up in price and my health implodes, etc. The PTSD aspect of waiting for the other shoe to drop and blow everything out of the water is humungous! – Ryoko
Time! Money! Benefits! Never enough time to work and spend time with the kids. Not enough money to buy things we need and Bette health insurance, maybe a retirement package – Tiffany
Better health and money so I could take better care of my husband. – Mary
Finding ppl that REALLY want to help my mom to receive soc. sec & medicaid (Kancare) more time w/my kids & husband. Money to buy a house & a car to take my mom back in forth to Dr.’s & chemo therapy appts. – Susanna
Money. With more money my husband wouldn’t have to work all week and most weekends. We could do more things together, travel, date night with a babysitter or two, but our own home, better/more reliable vehicles and a wheelchair lift van, all the equipment or modifications that my son needs it simply could use to make things easier. So many things. – Amber
Money! So I could provide whatever my Mother needs to recover as much as possible from the 4 major strokes she’s had. Insurance doesn’t do nearly enough. And it’s a constant battle to get them to cover the few things they do cover. It’s depressing. – Lisa
Money. You can’t have too much money when dealing with serious illness and caregiving issues. Everyone’s quality of life improves with increased financial support. – Kim
Joy & Resilience
Days feeling well enough to do something. – Cheryl
“Good” days where my husband and i can go do little things..like breakfast…to the beach. Money is great, but without health its nothing. – Ashley
Love…for my mum to have more ‘loving’ visitors and…love…for me – its no fun being a carer and single too. Be nice to get a cuddle from someone occasionally. – Joanna
Help, energy, patience, and more of myself. – Janie
Peace of mind…I worry about my clients when I am not there. I worry that they are not eating properly. – Michele
Sleep. Patience. (kind of go hand in hand). Support. Respect. And my own private island. – Kimberly
Energy!!!! I am so-o-o tired! I am a caregiver and can hardly keep going. Feel guilty for what I can’t do. – Phyllis
Back when I was caregiving, before my husband died, I wished I had support more than anything. I felt so absolutely alone. Sleep was the second thing I wished for and it was so hard to come by. – Sabrina
Friends that really cared…even just to ask me over for a cup of coffee. – Judy
True friends, I’ve got rid of all my friends. You cannot come in my house and disrespect me. – Cindy
I wish people would stop taking advantage of my handicapped daughter! Also that healthy people would stop staring at her. She became a quadriplegic 6 years ago & I’m pretty sure most people have seen a handicapped person in a wheelchair before. People can be so rude, they forget that they could accidentally end up in her position! – Patricia
Some responses have been edited slightly. You can see the original responses here.
Caregivers are an incredibly innovative bunch. We come up with all sorts of unique solutions to problems. A few members of our community shared their favorite tips and tricks to make caregiving easier.
Have one to add? Put it in the comments below.
Give them choices
Whenever possible, let your loved one choose between two options. “Do you want your bath now or in an hour?” Caregiving, in some situations, is what you are GIVING to the patient, not DOING to the patient. Choices, where possible, also provide for dignity and some level of autonomy for those who otherwise have very little. – Virginia B
Keep diaper mess to a minimum
The best thing I did for myself while caring for my husband who had to wear diaper’s for the last 6 month’s of so pertains to the diapers and clean up clothes. When I took his diaper off I had a one gallon zip lock bag and it went directly from my hand to the bag and was zipped immediately. Af for the wipes, I put them in a smaller zip lock bag the same way. None of these were ever laid down, straight from him to the bag’s and zipped. Everyone said they had never been in a house before where under the same circumstances there was at least a slight smell. I changed him as soon as he was soiled and never let him lay in anything but a clean diaper. – Barbara N
I purchased a diaper Genie it the baby section. It’s easy to move next to the bed and swallows to odors and all soiled items including the chucks. – Ronda B
Have a go bag
I keep an updated list of hubby’s meds on my phone; I’ve always got it with me so it’s never a problem if it’s needed spur of the moment. I also keep a “go bag” in my van so if we have to go to the hospital suddenly I’m ready… I’ve got it stocked with snacks, water, phone chargers, etc. – Maria E
Create the tools and systems you need
Our son is non-verbal and due to multiple disabilities he can’t operate a communication devise….we use a calendar and sticky notes to help him help US get back to ideas he had. Example: he uses eye gaze to tell us he wants to watch a movie, but it’s time to take him to his day program…. on the sticky note I write, “Robert wants to watch a movie when he gets home” and I stick it on his calendar. When he gets home he uses eye gaze towards his calendar and “reminds” me about our plan….before this simple system he would get frantic that we would forget and feel frustrated and misunderstood. This has transformed our days. – Mary T
Google. Google calendar, Google docs, Google tasks, Google reminders, Google maps. Need to keep up with someone else’s appointments or share appointments with someone else? Create a second (3rd, 4th,…20th) calendar and share. Need to manage medication lists, contact sheets, etc.? Google docs. Portable and shareable grocery and/or task list? Google Tasks. Need to remember to stop by the store, pick up prescriptions, or call someone back? Google reminders. Need directions? Google maps.
“OK Google.” Turning on this little charmer on your Android cellphone is a great time saver. “OK Google…. Create a new appointment with Dr. Doe for February 23, 2018, at 9am.” “OK Google…remind me to stop at CVS.” “OK Google…remind me to call the bank tomorrow afternoon.” “OK Google…remind me in 45 minutes to remove the casserole from the oven.” – Joseph A
Use a little distraction
Subtle feeding trick: when offering a bite, don’t ask “are you ready” or “another bite?” Say something c completely unrelated. For example, “wasn’t today beautiful day? “And as they start thinking, raise the spoon to their mouth and automatic reaction will be to Open their mouth. I’ve had great success with this Little trick. Clearly, you want to be careful that the person is a good swallower, and of course there’s no guarantee what happens to the food once it’s inside their mouth especially if you have a spitter. – Steven R
Roll with the rules of their world
As a dementia caregiver for many years, one of the biggest things I learned was to enter their reality. No matter what weird things come out of their mouths, just agree with them and roll with it. For one thing, if they feel they are being listened to and understood, they are far more likely to be agreeable with what you want them to do. And for another, it takes you on some interesting journeys. My favorite example: Sitting with my dad by our large picture window that looked out over our cul-de-sac. He was watching the ships come into the harbor, so happy. I pulled up a chair beside him and put my head on his shoulder and watched the ships come into the harbor, too. One of the happiest memories I have with him in his final days. – Kathe P
Keep people busy
I always let my wife, who has dementia help with everything possible.
Folding laundry is her favorite. We have a closet full of linens that looks like a 3 year old done the job, as for me, I see my wife doing something to keep keep her mind working. – John W
Make everything fun
Humor. I try to make my wife laugh or at least smile. Just something silly I will do to lighten the mood. Sometimes it works sometimes not. She has such a beautiful smile. – Greg S
Humor. I kept her laughing and engaged in conversation about kids, grandkids, and other topics outside her hospital room. – Dennis B
Get help with moving people
Someone here I think suggested a satin pillowcase under the butt to help slide off the bed and onto a chair etc. works great and reduces aggravating bed sores. – Pam C
Use a pool noodle just under the fitted sheet and on top of mattress. Keeps one from rolling out of bed! – Susan W
Use hospital pads to turn or pull up & for accidents for someone bedridden. – Karen D
Learning to set boundaries. I have learned that I am not super woman and have to say no sometimes. – CIndy H
Caregiving can be stressful, hectic and especially isolating. Reach out to friends and family if you’re sinking. A phone call helps so much, even if interrupted throughout. And biggest thing for me – no matter how bad a day is, there’s always tomorrow which holds a clean slate. Some mornings I literally envision God taking my hand and pressing a reset button. It helps. – Celia M
You can read all the responses here.
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
View all of the responses on our Facebook page.
Coping with stress is a constant challenge for caregivers. Coping mechanisms that are actually realistic for caregivers is a pretty frequent topic of conversation. Here are some of the suggestions that came up recently.
After the day I had, tonight it was a glass of wine and later ice cream with a banana and chocolate syrup. I know, not good! But it helped — LOL – Deb
I make a cup of tea when I get home, then snuggle up with my cat & listen to her purr. If that doesn’t work, vodka! – Jen
I am not in a position to take time off. What this means is my brain will not let me rest by staying in a hotel room, or anything like this. It has to be short lived, such as being able to drive on my own to get stuff done, where I decide to stop and watch movie or pick up a treat. After 7 years of living like this, the means to cope with stress have been worked in. No, it doesn’t always work. I have found for myself, I need to give myself permission to fall apart and if it is an off day, so be it. I know, easier said than done. The bathroom with the handicap style shower, with a place to sit and rails, I have set up to have a spa feeling. I have similar relaxing plans for the garden. The porch on the other side is being groomed to be a place to sit and relax, since dad likes to read outside. – Brieya
Spend a few quiet moments in bed before getting up in the morning, using that time to scroll through Facebook and Pinterest. Do a daily morning workout and yoga in my bedroom in the AM while mom is doing YouTube chair yoga in the other room. Listen to some positive Pandora music when showering and getting dressed. Take mom to the park or the beach to soak up some Vitamin D. Read when I have free time. Enjoy an evening walk with my husband and return to a nice glass of red wine. – Paola
I cope with God, wine, and music!!! – Mayra
A nice long drive in my car ? – Naomi
Tomorrow is another day and I will be there to help, no matter what the day brings. Some days I have a glass of wine or a beer before going to bed. – Mary
Play video games on my phone. Seriously. I am so the bomb at Cooking Dash. I’m amazing! – Kim
Yoga. Prayer. Chocolate. – Carol
Lots of prayer, reading posts on FB with encouragement and positive words, get enough sleep, walking several miles every day, take DHA fish oil and Sam-E, listen to music and sing along with the radio. – Sheron
Get lost in a good book, bike on my recumbent bike and sing loudly to favorite songs…and, of course, pray! – Susan
Bubble bath+ buttermint tea! And shopping!? – Jona
I listen to music, talk to one caring friend, go feed my horses–they’re old so it’s all I can do. – Carol
I would LOVE to be able to garden again, but I have become physically disabled due to spinal injury, I can’t do that, so I try and get a little bit accomplished around the house, in addition to caring for hubby, before I mindlessly play solitaire on my phone. – Kathryn
I work outside about an hour a day in my flowerbeds and garden. And I tend to do it when my husband is napping. Therefore I have peace and quiet. – Stephanie
Writing. I hope to one day write a book on my experience as a caregiver. – Sara
Try to go for a run(as if)…try to do sewing for myself or my children…otherwise, go into function mode and get on with what must be done. – Tracey
Gardening! And the occasional shopping trip, on or off-line, and oh yessss the choc-o-lat-tayyy!!! – Wendy
Long hikes in the woods is the best way for me right now. – Penny
Chocolate and talking to my sweet golden retriever. Unfortunately he’s old and wearing down along with my hubby. I can’t even go there… – Debra
I have not de-stressed well at all since my best friend, my dog Diego died 2 years ago at 16.5 years old. He was my zen. He instantly calmed me. We went for walks and snuggled a lot. I’m a 6 hour drive from my husband and have only been able to see him 2-3 times a year for 4 years now. I’m considering leaving my mother (my whole family agrees) as she isn’t open to any options (move up with my husband and I, assisted living) and my mental health has bottomed out. – Salem
I don’t get to relax – my hair has all but fallen completely out – when I can I go visit with my horses which I haven’t ridden in over a year- and my dog sleeps on my bed with me and knows when I’m overdone. – Rusty
I have always used sleep as a way to relieve stress since I was a small child. You could liken this to “freeze” in the fight, flight or freeze adrenal response. It’s harder to get sleep when you’re an adult though. – Jeannine
Real time off
Well after the past 4 years of first taking care of my dad at home until he passed away almost 2 years ago and then taking care of my mom with Alzheimer’s…my therapist suggested if I didn’t take this mere 3 days for just me, I won’t be able to continue at this pace. I really feel like I pushed myself to the edge. And instead of going over the edge I decided to listen to my doctors this time. For the very first time I have reserved a hotel on the beach for 3 days. Where I have instructed my family that during this time….I am not a wife, mother, daughter, caregiver, sister, friend, or anything else. I am disconnecting from my life for 3 glorious days by myself sitting on a beach while watching the waves! – Marianne
I make sure I go away completely by myself for a couple of weekends a year. I find some kind of conference I am interested in a place I would love to see and just go. I do not feel one bit guilty, because I come back refreshed and stronger to deal with life! – Susan
You can read all the responses on our Facebook page.
We asked the community if they’d modified their home in order to better accommodate the person they cared for.
The most common additions were:
One item I found very useful, in addition to the items others have listed here, is our Honeywell wireless doorbell purchased from Lowes. We attached the doorbell to mom’s bedrail and the speaker is across the house on our bedroom nightstand in case she needs us during the night. I can also bring the speaker outside with me when doing yard work (250 ft range). – Mike
We have the same thing and it’s a life saver. – Genie
If your person is small like my husband, you may consider getting a kid size wheelchair. It fits through those smaller doorways. – Pierrette
A note to homeowners: ADA requirements for wheelchair ramps are rules for public establishments. You do not need a 1:12 ratio in a private home. Our wheelchair vendors have said 1:9 ratio was just fine. That is what we have for our house and it has been entirely satisfactory. – Lee
Not big things but little things. Hand rail in the tub. Shower seat. ADA toilets. Reaching grabbers in every room. Guard rail on the bed with a yoga strap to roll over. That bed rail is the one I used when I was little. It is metal and super strong. – Alicia
Removed all rugs, built handicap ramp, installed railings in bathrooms, bought a swivel shower chair for the tub/shower, removed the door into the master bath for ease of entering, have hospital bed and bedside commode for nighttime use, electric recliner for ease of use…monitors in the great room and bedroom. – Deb
We have chain locks- up high on all doors since my son is a “wander/runner” with asd. We also have all cabinet doors with magnet locks and I can’t decorate for the holidays. – Danielle
We have installed hand rails in my Mom’s bathroom and shower to keep her safe. Bedside rails in her room. We also modified appliances when she was able to use them (she is sight impaired). We are still trying to figure out what to do with our stairs. We have a 4×4 at the top of the stairs and when Mom hits it with her walker, she knows to go around. Most of the time. Sometimes she just keeps pushing and banging against the barrier and I’m afraid she will topple over. My biggest fear is that she will fall down the stairs. – Kathy
Haven’t had the money to do much. We have a walk in shower, but she wont’ use it. Taller toilets. I had handrails installed on both sides of the stairs. I also have a video baby monitor in my moms room so if she gets up, I can see and hear her. She isn’t too mobile, so she comes down in the morning, then stays down until she goes to bed. – Julie
My family installed rails and put in a safe shower with no slip bottom. I have alzheimer locks and door alarms. recently added a driveway alarm to the door which I like better as the alarm rings at my bed if someone crosses the door and goes out the sliding glass door. – Cindy
We added rails to the front and back porches. We installed a handle bar on the rear door. All rugs were removed as well as the floor transition panels between each room. Also installed bathroom bars. Other minor changes done as well. – Sharma
Custom windows with tempered glass and special locks for my autistic teen who kept breaking the glass. – Karen
A nice ramp and deck in the back of my house (front yard is too small for a straight ramp), new doorknobs (more like handles) on her bedroom door and the bathroom door, and I removed all my pretty rugs from my hardwood floors. (Tripping hazard). Other things I can’t think of now. – Angela
While she was still in the ICU I had her mom get in touch with my wife’s uncle to have railings installed up both sides of each set of stairs. Also because she was a flight risk I hung bells on the bedroom door so that I would awaken if she tried to escape at night. – Andrea
I added a stair glide stair lift to take Daddy up and down the steps. Also railing for the shower and a shower seat. It was a slide chair….1/2 out of bath and 1/2 in, He sat and lifted his good leg over tub and I then lifted the bad one. He scooted over. Worked well. Sooooo much change in life when being a caregiver. – Mary
The VA came in and did an assessment. They put in ramps, stair lifts, hand held shower nozzles, shower seats and grab bars! We were so grateful, because my father in law really benefitted from the modifications! – Sharon
We set up ramps, chair lift, tub rails, adult height counters in both kitchen and bath. Remodeled complete basement with wide doorways and easy two and three way lighting including switches with remotes for easy lighting. – Linda
Adding on an accessible bathroom was cheaper than remodeling our master bath (which had already been completely gutted and remodeled already.) Its an option worth considering. An additional bathroom almost always adds value to your home. – Libbi
Handicapped height toilets. A new bathroom for him; toilet, sink, and a shower with a bench, hand held option for showering, and no doors or curtain. There is a drain in the middle of the floor. Easy for me to shower him and I don’t have to lift him in and out of the tub anymore. Ramps for front and back doors so that he can be more independent and there’s less worry of him falling. Half in ground pool so we can get him in and out more easily and safely. No throw rugs; they’re a trip hazard. Wider doorways for when he needs his wheelchair, which is every night and morning when his orthotics are not on. We also bought him an adjustable bed to help with reflux disease. – Ginnie
Installed wheelchair ramps, converted basement bathroom walk in shower by expanding the room to a roll in shower room, add’d a Acorn stair lift , mounted a chain above bed for lifting & adjusting self, hand rail and Auqa bath lift seat for main floor bath that was replaced with a hydrotherapy jetted tub, 2 shower/potty chairs. 2 push behind wheelchairs ( 1 for main floor 1 for basement) 2 electric recliner chairs 1 for basement 1 for main floor. a single electric bed for main floor living room and a queen size electric bed for basement bedroom, monitors, and handicap van. – Brenda
Outside the home too. Lots of cement walkways wide enough for wheelchairs, raised beds, keeping plants near to discourage wheelchair in dirt/mud. – Kathleen
Presently under remodeling…..it’s getting on my nerves but it has to be done. Widen doors, ramps, new walk in shower, remove carpets and replace with laminate wood. – Delisha
We gutted the main floor and widened hall, doors, opened kitchen, 5′ turn around in master bath with raised toilet and roll in shower, ramp in side entrance, chair lift to basement, eliminated any raise at deck door, other doors out, van conversion, these were the major things. – Sue
Initially yes. But then the old house became very impractical even with modifications so we had to move altogether to a much more care friendly home. Life is easier and more comfortable now. – Frances
Moved in Dec to home with a more open floor plan & thought everything was good. In Jan we took out carpet in mom’s bedroom & installed tile. Removed bathtub, toilet, & vanity in her bath & make walk in shower, handicapped toilet, new vanity & grab bars everywhere. Approximately $15k we hadn’t planned to spend. – Danette
We had to be moved to a bungalow because my son has Huntingtons disease. It has a wet room. No other modifications. As apart from bubble wrapping the whole contents of our home this dreadful disease doesn’t really ‘do modifications’ just danger with no solutions 🙁 We get by on a wing n a prayer x – Shelli
To view all the responses, visit 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
We asked our community members what the best source of caregiver support they’ve found is. While we could all use more support, here’s what’s helpful.
I am the lone wolf taking care of her now. I feel just left to completely be in a silent world.can’t get out with the way things are being the sole caregiver so Facebook is a godsend. It sure gets lonely. – Renee
Facebook pages aren’t the same as human connection, but you might find some understanding on other caregiving pages. There are some that are private, and most I have found are under the sandwich generation title. – Chelly
A group on Facebook filled with like-minded couples all dealing with spinal cord injuries. It’s called Love Like This Life. Wonderful group. – Erin
I have found great support though 2 fb groups for SCI caregivers and spouses and another for FTT. – Kirsten
You can connect with other caregivers in our private Facebook groups.
Volunteer caregiving organizations
The Alzheimer’s Support Groups has a 24/7 helpline 800-272-3900. There may be Faith in Action or National Volunteer Caregiving Network respite programs in your area. – Helen
Home Health Care Agency…but I miss so much time from work when the nurses choose not to show or cant show. I dont have family or friends to help. My daughter or my other son they help here and there when I get to a point where I HAVE to have some time for myself. Surprised I still have a job. – Rhonda
Personal support. Just having someone to talk to, who can say with all understanding, “I get it. It’s hard, I know, but you will get through it” because they have been there. Having someone who can provide real, honest empathy instead of empty platitudes. – Debbie
You can always connect with other caregivers here as part of our community.
Our Hospice Nurse and Aids. My Aunties, Cousins and friends who share funnies with me on Facebook because they know I can’t get out too much. – Carla
Palliative care then hospice for my parents. – Deb
Hospice was a life saver. Their employees and volunteers1 – Julie
Family & friends
My husband has been helping me take care of my mom in our home for over 13 years. I recently completed my Master’s Degree and could not have juggled caregiving, work and school without his support. He is an amazing husband and the best son-in-law ever. – Kathy
My husband. We’ve been married 3.5 years. He is God’s blessing to me. – Jeannine
Right now my younger brother. He just recently took over so I could have a ‘me’ day in town. – Mary
My sole support for caring for my adult son with muscular dystrophy is my younger son and a couple friends. – Erika
Support is limited
We were caregivers for over twenty years and over time friends, family and others drifted away and we were left on a island with our loved one and each time we reached out for help from Agencies the door was slammed shut or we were told they could provide someone for two hours one time a month. Caregiver support is really a myth. – Jean
You can see all of the responses here.
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!
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.
Welcome to the world of caregiving.
It’ll be hard, but it’s worth it.
You will never ever regret being a caring caregiver. – Debra Taylor
It’s all about love
Remember to love unconditionally, when it’s a family member. – Mimi L
Don’t be afraid to ask for help. Take any and all offers – they eventually stop. – Narelle
The only advice is to reach out and ask your for help. If you don’t and it becomes a long term as it has with my family, people back away, be open and honest that you need help. – Maggie
Remember self care
Take good care of yourself too. Find time for yourself. It can be something as simple as reading a book. Never forget yourself. – Mimi L
Don’t forget yourself
It is important to maintain certain projects that gives one a since of identity. Why? Because so often as the journey continues it is easy to lose sight of who we are, or were before the all consuming responsibilities are upon us it is too easy to lose our sense of purpose. It is best too if these projects include some sort of creativity. Why? Because a wise man charged with running a school for children with disabilities once said to his staff that when doing such a job as caring for another, creative efforts provide the in breath and the caring effort is the resulting out breath. – Linda
Make decisions together
As a veteran caregiver of both mom with dementia and spouse with MS, patience patience patience. Breathe and try to understand their state of existence. Think through to solutions that work for everybody. Ask before you make decisions about their care. – Joanna L. Brandon
Sometimes you have to be forceful
Be proactive, especially where your parents are concerned. We’re taught and experience trains us to follow their lead and defer to their wishes, but there comes a point where everything they taught us comes majorly into play. It’s a role reversal and we chafe against it, but it must happen before a disaster dictates the when and where. – Kat Drennan
You can’t argue with ALZ
Caregivers have to adjust, adapt, and accommodate because you can’t teach, train, or tell. Momma was on her own strange journey. I could not go into her world, but I had to survive it in order to help her. – S
Here’s a tough situation quite a few caregivers find themselves in: being responsible for selling a home that’s not in great shape. What do you do when no one seems interested in buying and you can’t afford to keep it?
My sister and I inherited the house we grew up in after my mother’s passing. We are struggling to sell it.
The house needs some repairs and is in need of a renovation, but we can’t afford to do this. There’s a $9k mortgage.
It’s been listed at $50k, but hardly anyone is even looking at it. What can we do to sell the house?
If we can’t sell it, what can we do so it doesn’t damage our credit? I was told that if the house goes into foreclosure it will ruin our credit.
If the title is in the name of the estate, then it doesn’t affect your credit at all. If you put your names on the title, then it will. Sell it ‘as is’ for anything over the mortgage and realtor fees. I’m sorry you’re dealing with this. The loss of your parents and your childhood home must be difficult. The right family will come along, fix it up, and again make it a loved home with happy memories. Peace of mind is priceless. – Kathy C.
I was in a similar situation about 10 years back after the death of my brother. There was a higher mortgage than yours and it needed lots of repairs. I let it revert to the bank (just quit paying the mortgage) and they sold it at a sheriff’s auction. Funny thing is, the new owner got in touch with me and had me over to see the improvements he made. He’s a real nice guy and it’s comforting to know my brother’s home went to him. – Martha P.
Lower the price and it will sell. – Catherine D.
You may not want to make big financial decisions when you’re in grief. Give it a little time. – Kris M.
I’m sorry for your loss. I’m sure you have a lot of emotions going. Try to think of the house sale like a business. Sell it quickly and take what you get. Don’t worry about what you could get, since you can’t afford to make it ‘marketable.’ – David F.
What about donating it? Perhaps someplace like Habitat for Humanity will take over the mortgage and fix it up so someone can live there. – Mari D.
Is it your mortgage? Unless the mortgage is in your name what happens will have nothing to do with your credit. – Jack R.
If you’re in probate, be aware that you may need the probate judge to approve the price and buyer. This needs to be part of the listing. This adds time to closing and frequently results in a lower sales price. Probate judges are used to houses selling for somewhat less than they’re worth. – Jana D.
Not every upgrade or repair you make has to be expensive. – Cori C.
Are you listing with a realtor? Ask her to market it to investors who may be willing to do the work. If you’re not getting bites, you’re priced too high for the work that needs to be done. You have room to drop it. – Jennifer M.
If you just want to get rid of it, see what an auctioneer thinks it will bring. – Erica J.
Look into local real estate investor Facebook groups. Join and post the ad there. Check out FSBO (for sale by owner) groups. – Patrick N.
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.
So many of us have promised our parents that we’d never put them in a home.
And then, one day, we do.
Putting a loved one in residential care is an incredibly difficult decision for anyone. It’s even harder when doing so breaks a promise we’ve made.
Here’s what our community has to say about it.
I do care for my invalid Mother at home, but promises or not, there are instances where one can no longer care for a parent; so choose a nursing home carefully, visit very often. – Phyllis M.
What if you get sick? Or disabled? Of course you provide better care than other people would but it is important to make plans for what to do in case of emergency. Caregivers develop illnesses and have accidents just like non-cargivers. – Jeananne E.
I tried as hard as I could not to put my dad into a nursing home. I had to in the end for the last months of his life because I couldn’t lift him anymore. He died not forgiving me for doing that. No one else helped me care for him all those years. Now I care for my mum and I am doing a great job. However she knows that I will only put her in a home when I can no longer care for her re my health or my inability to lift her etc. I will sleep well when she goes to God because I know I have done all I could for her and dad. Those who do nothing are the first to throw stone. They are the ones who live their lives only unto themselves. – Diann P.
My moms care is taking its toll on me, physically, emotionally, spiritually. It’s difficult to say the least. – GG W.
When you keep anyone you are caring for in your home it engulfs you. I have had the greatest caretakers in for Mom. We are truly blessed for that. It’s my time now to live. I have a world to conquer before my last breathe is taken. Address the problems and run it like a business but remember you can only run hard for a few years. Then it’s time to make this decision. Best of luck! – Diane B.
Many families have no choice. We should not shame people who are at the end of their ability to caregive. And sometimes when people get to this point the care at home is awful. I have seen this many times. I understand care in nursing homes and assisted living facilities may not be good but sometimes there is just “The end” to the ability to caregive especially if the care recipient is violent or doesn’t sleep. – Jeananne E.
I think keeping a loved one at home after decades of illness is not good for the loved one or caregivers. It sets everyone up for injury, undue chronic stress and most caregivers are physically incapable of the job. The whole family should matter not just the sick person.
Keeping the individual at home sets everyone up for extreme social isolation cutting them off from services and finding friends. Nothing like group depression to compound issues. If you realize the family member has deteriorated beyond the point you can safely care for them, bite the bullet.
That said, I believe most families are deterred by what they see as high costs and that once the family member runs out of money, he’ll be evicted and back at home. – Angela M.
I promised that for both of my parents.
But I did have to put my dad into a nursing home after years of caring for him at home because he was becoming too violent.
It’s a horrible feeling when you have to physically restrain your father because he is trying to kill you. I dealt with his verbal and emotional abuse for years but on two occasions he tried to end my life due to the demented state he was in.
I still care for my mom in my home. – Lorne S.
My MIL will cuss you, hit you, and throw things at you! She would stab us if we didn’t hide all the knives. – Vickie B.
Sometimes we must make decisions that are difficult due to our own health or situation. Do the very best that you can with love. I do care for my mother at home, but understand if one cannot. Only one who has been there can understand. – Phyllis M.
I used to visit the “Old Folks Home” on my way home from elementary school. I promised my Mom she would never have to go there. It was like the dog pound. I quit working and took care of her, by myself, until she passed at age 94. Her dementia took a toll on me that will last all my life. – Cherie H.
I know I can’t change a diaper of a 230 lb woman for the next 10 years while working and raising my daughter. – Jennifer G.
It’s not abandonment
“Abandoning” is the key word here.
When your parent(s) go to live at assisted-living or nursing home, visit/call them often. Then, you aren’t abandoning them. – Kristi W.
My mom is in assisted living 3 miles away. She has her own room. I take her to all of her doctor and dentist appointments plus we have her over every week for a break from her home, to go to church with us, and have a family meal. I also buy all her clothing and personal needs items plus clip her fingernails and bring her to get haircut. She won’t let the aids cut her fingernails. She wants me to do it. She is able to live out her life there even in hospice. Since she is so close we will be able to be there all the time anyway should that time come. – Jeannine G.
You can not risk your health way of living or sanity to take care of a parent. If they were in their right frame of mind they wouldn’t want you to. Take care of yourself and visit often. Take them out on outings if their health allows. – Renea L.
It’s a pretty common problem: the person you’re caring for is refusing to bathe.
Here’s advice from other caregivers on how to keep everyone clean, safe, and happy.
What’s normal to them
We have to remember that more than likely “back in the day” your father did not bathe except for perhaps once a week for church/synagogue time. Encouraging cleanliness is not easy, but perhaps sponge baths are the best hope for now. – Marie N.
The feel of the water
[People] with sensory processing disorder struggle greatly with baths and showers because they don’t like the feel of the water. It’s not uncommon for anyone of any age to struggle with SPD, especially the elderly. – LaKea H.
Making them comfortable
Identify something special to them — might be a food treat, an outing, a special visitor.
For my mom it was having a fire in the fireplace even when it was warm outside. She loved to sit in front of it and so it was great to start the fire and then she knew when she got out that she could sit and warm in front of it, I bought those 4 hour logs.
Warmth is very important — remember how you would warm the room for a baby’s bath. We have to remember that it is a bath they likely remember not a shower.
- For women lavender soap is soothing. Or their favorite perfume from years past.
- Perhaps get some Old Spice for older men and put some out in a bowl to the smell is in the warm room. Many older men used to use Old Spice.
- Never spray the water on their head or face.
- Let them do as much as they can.
- I agree with letting them start with washing their hands or face with a cloth.
- Having a secure and easy to use bench to sit on makes it less scary.
- Wear something you can get wet. Have plenty of towels and mat because water will be everywhere.
Make this difficult time a sweetly speaking quiet time. We caregivers have to acknowledge bathing is often difficult but not a battle of wits or strength. A shower can be weekly and bed or sponge baths in between. Just making sure the personal areas are really cleaned to avoid rashes and breakouts and skin breakdown. Finally, the person might do it easier for someone else. If so let the other person do it. Even if you have to pay $20 a week to an aide it will be worth it. Some aides will come in just to do a bath. – Jeananne E.
It is a difficult situation, but once or twice of having the bathroom nice and toasty warm with the bathwater and all grooming necessities in place, it was easy to take my Dad by the hand andassist him. He did always feel much better afterwards and it soon grew (in that stage) to be my responsibility of getting him in there.
Sincere encouragement and patience are key in hopefully gaining the needed level of cooperation. Depending on what meds your patient or loved ones are under the influence of can be a determining factor as well. Valerian Root (a natural supplement) helped to relax my Dad. Don’t use it unless consulted with Dr. if other meds are administered. Best of luck and love to all under these circumstances. I know it is not easy. – Vicky H.
Ease your way in
Don’t say bath. To the elderly it’s allot of work.
Just let’s wash your hands and go from there. That’s what I did with my Mother while she was walking around. She’s in a hospital bed now and we use the same words. We never say bath. She says I just took one.
So we now say we’re going to wash your hands. And then go into full bath mode. After its over we say doesn’t that feel great. She agrees and takes a nap. – Diane L.B.
Use bed bath products & wipes
In my case I used bed bath products. Most can be found at local pharmacy stores. Wipes, no rinse cleaners, shampoo, buzzed off hair all make things easier. Baby wipes for sensitive skin are good.
It’s a struggle
Oh how I feel Your pain! My Dad was the hardest. He would just cry cause he didn’t think it was right for me to give him a bath. We struggled but got it done. My Mom on the other hand is well something else, but we manage. They even admit they feel better after.
Adult disposable wipes are good, too, when the struggle is real. – Pat S.
It is literally IMPOSSIBLE to get my MIL to bathe! She will cuss you, hit you, try to bite you, and cry, like you are trying to kill her or something. Nightmare! – Vickie B.
Some days I lay on my bed and cry after doing it because I know it’s a physical demand from her and it’s also one for me! – Kellye H.
My Mom wouldn’t bathe. For 9 months she refused! I have hospice come in now and they give her a sponge bath 1-2 times a week! She’s mean — curses, hits, and throws her cane or even her walker at me! I try to help her…but all I get is cursed at or hit. I just walk away! It’s hard. – KJ
The lives of caregivers rarely rely on the calendar, they go on the schedule of the person we’re caring for!
Still, the beginning of a new year is a time for reflection. Here’s what our community is planning on doing this year…and what we’re hoping others will do to help us.
What are we hoping to do in 2017?
Find one week to do what I want to do when I want to do it
Take my caree out to more fun places
Help my caree to be stronger and more independent
Continue to just be…and be thankful for each day
Have more patience
Find time to be creative and make my art
Create and maintain healthy boundaries
Make peace with my caree’s illness
Be more active now that I am no longer a caregiver
What do we hope for all caregivers in 2017?
Lower insurance copays and lower medication costs
Better hospital discharge planning
Refundable tax credits for caregivers, like child care credits
Support from Medicaid and Medicare for in-home care
Family caregiver training
Regular respite resources covered by insurance
Social Security contributions for time spent as a caregiver
Additional in-home care aid hours covered by insurance
More volunteer respite resources
Tax deductions for mileage to and from medical appointments
Meals delivered for disabled and ill carees who are not elderly
Assistance with household cleaning and maintenance
Most people associate PTSD with veterans of war, but you don’t have to be a soldier to experience this condition.
The NIMH defines PTSD as ‘a disorder that develops in some people who have experienced a shocking, scary, or dangerous event.’ When people experience a traumatic event, it’s common to be impacted by it with a range of emotions. People with PTSD don’t recover from this initial trauma. It doesn’t have to be triggered by a ‘dangerous’ event; many people experience PTSD after the death of a loved one or another emotionally challenging experience.
Risk factors for PTSD will sound familiar to family caregivers. They include:
- Living through dangerous events and traumas
- Seeing another person hurt, or seeing a dead body
- Feeling horror, helplessness, or extreme fear
- Having little or no social support after the event
- Dealing with extra stress after the event, such as loss of a loved one, pain and injury, or loss of a job or home
You can learn about the symptoms and diagnosis of PTSD on the NIMH website.
If you think you may have PTSD, talk to your family doctor. If you aren’t comfortable seeking treatment, there are still some first steps you can take. Reducing stress through exercise and seeking out comforting situations can help you feel more secure. Get support from your friends and family, especially by letting them know what situations trigger your symptoms. Try to be realistic about what you can do each day, break up projects into small tasks, and accept that you can’t do everything. PTSD doesn’t go away overnight, but it can get better.
Here’s what some of our veteran caregivers have to say about PTSD:
After caring for my husband, for 20 years, I am afraid to answer my phone, open mail, or attend doctor appointments, fearing more bad news. I just want to hide. – Lynn R.
If you sleep with one ear open, you startle easily. Loss of sleep triggered by this startle reflex, will lead to ptsd. People who fail to understand my situation don’t believe me, but thankfully medical professionals do. – Angela M.
After 27 years caring for my very vulnerable son, I can tell you that it is indeed PTSD. For a mother, the fear of something happening to your child is much worse than anything that could happen to yourself. I have an anxiety disorder and have suffered from depression. You live in terror every time you hire a new respite worker, and only trust yourself as a caregiver. Your decisions carry so much weight that some days you feel they will crush you. – Dawn D.
Being part of caring for my MIL definitely has caused PTSD. Its a complete nightmare, and now I am scared of her! She talks about cutting people and watching them bleed! I know its the dementia, but she scares the hell out of me! I have nightmares about all of it! – Vickie B.
Anecdotally, caregivers who take care of a family member who is or has been abusive are more likely to talk about suffering from caregiver PTSD.
I’m the only child in my 50’s. My parents are near 90, refuse all outside care, cashed in their life insurance policy with not enough for burial. Now there is over 12k in medical bills and they won’t call a lawyer or approve forms for Medicaid. They say no one is putting them in a home. Mom has fallen numerous times and in nursing care and Dad signs her out. To stay out of care she shifts blame onto anyone including, and most of all, me. Agencies won’t help. Doctors quit the case. AOA said it’s one of the most difficult cases they have encountered. – Jacqueline A.
I wish my mom would understand that no one wants to help her because she is a mean old spiteful monster who has alienated EVERY one in the family to the point that they don’t even want to call to talk to her anymore. But she blames me for it! – David R.
I used to think that I would ignore my stepfather who abused me, but when it came down to it…I had to treat him better than me. – Jennifer K.
I can relate to caregiver PTSD from taking care of my mother that never took care of me & Granny that raised me! – Chrissy G.
What should you do if you feel you have caregiver PTSD?
The reason you have PTSD is because you love and you care. The key to reducing anxiety is to get out of your own head. Watch your self talk. Be kind to your mind, it does not know the difference between perceived danger and real danger….live in the moment! – Dawn D.
If you are feeling overwhelmed, you may, very well, benefit from talking with a therapist or counselor. I have learned to take time, for myself, once in a while, to spend a few hours, with friends, or even just go for a ride. I feel guilty, for even smiling, sometimes, but we have to take care of ourselves, and find ways to keep our spirits uplifted, while we care for others. For what it’s worth, I would advise you to, whenever you can, do something special, for yourself, even if it is a meal out, a movie, or just something you like. Try to interact, in a positive way, with others, and rejoin the human race. You are entitled to happiness, and, your [loved one] may even want that for you, as well. – Lynn R.
Some comments have been edited slightly for clarity and grammar.
The caregiving community is incredibly diverse, but it seems we can agree that dementia caregivers — both family and professional caregivers — should be trained. Dementia caregiving is a world where the ‘normal’ rules don’t apply and we all need guidance learning to support, motivate, and keep people with dementia safe.
Family caregivers and professional caregivers both report that they wish they’d gotten training in dementia sooner and that it makes their lives easier — while helping them take better care of dementia patients.
Even at the assisted living facility where I’m a nurse, where I’d say the majority of my residents have dementia in some form, our aides have no idea how to handle it.
One resident consistently tries to “go home,” often packing up all her things, trying to get out the doors etc. The best way to calm her, I’ve found, is to tell her something to the effect of “the moving truck broke down and they won’t be able to fix it until tomorrow.” She accepts that and goes about her day.
So many times I’ve had to coach my aides because they try to prove to her that she lives at the facility, showing her name on her door and things. This only leads to her becoming agitated, then I have to medicate her because nothing will calm her down.
I like to explain it like this to my aides: imagine you’re finishing up your shift and someone tells you that you can’t leave, you live there and it’s time for you to get into bed. You know 100% that you don’t live there. When no one lets you leave you get mad, and scared, and you just want to get out of there–these people are keeping you in captivity. You’ve got to get home to your kids, go grocery shopping, and no one will let you go home. You haven’t worked here that long and now they’re telling you that you can never leave.
Because dementia patients can’t be “taught” out of their delusions. It just doesn’t work that way. So yeah, dementia training should be 100% mandatory. – Devon C.
Here’s what our community members have to say
The focus for many places, caregiving organizations, and doctors seems to be on what the dementia patients have lost ability to do. There is still so much they can do, respond to, which if we help facilitate will make the patients daily life meaningful. – Colleen H.
One of my mother’s caregivers from the agency was up all night arguing with my mother about whether there was a baby in the house. My mother asked “Where is the baby?” The ones that had training in dementia knew to answer with, “the baby is at your daughter’s house tonight so that you can rest.” – Barbara K.
I don’t think it’s a bad idea at all. My husband has Alzheimer’s/dementia and sometimes it is so hard for me to handle the cognitive /not cognitive moments with him. I try to just “go along” with those moments, but, it is very difficult. If there is a better way to handle it with proper training, sign me up! – Kathleen S.
I agree training would be great. Everyone doesn’t have the patience to deal with dementia/Alzheimers patients no matter how trained they are. They first need a heart to care and understand that this isn’t an easy job. – Quince J.
I’m caring for a grandparent and I was totally unprepared for the multiple bad episodes. Even her gerontologist isn’t much help. – Fern L.
There are times that you will wish you had training when they have a really bad episode. That training can make a big difference to their care and your approach. – Nicole K.
I’ve done all my own training on my own time with my own money because I adore these people and they deserve to be understood and their families deserve to know their being well taken care of. – Michelle W.
I used an agency to get a caregiver for my mom with Dementia, it was amazing how little they knew and were just trained on the cleaning part. I was training them and paying them hundreds of dollars…very sad. How do you help your client if you don’t understand their needs? I feel very bad for elderly that don’t have family around all the time to oversee the care they are receiving. – Terry F.
Caregivers who are inexperienced in this field leads to abuse because of the lack of understanding. And by abuse I mean unknowingly acting out towards the person with out intentionally meaning so. When a caregiver doesn’t understand and that caregiver starts to get caregiver breakdown, unintentional harm happens with out even realizing themselves they are doing it. I’ve personally have seen this happen way to many times. It’s a bad situation to both parties involved. – Kim S.
I hired caregivers to help with my Dad, and I was amazed at what they didn’t know about Dementia patients. I had to train them how to react, care for and converse with my Dad. – Patti K.
I take care of my Mum who has Alzheimer’s. I’m very glad I got trained in this area. It has been a stress saver. When I look at my Mum, I see the great honour I have been given to take care of her. – Melody F.
After what my nans going through on a so called dementia unit in a hospital, I think people need training. We have to go to the dementia unit and feed her everyday because they don’t have the patience. They have no idea at all. – Charlotte S.
Some comments have been edited for clarity and/or grammar.
Do you feel like you’re doing the best you can, all the time?
No matter how hard I try, it gets to me sometimes. Love alone isn’t enough for me to not lose my cool. Maybe it should be. Maybe it is for you. (is it?). But the pressure mounts…the bills are piling up, insurance is denying pre-approved claims, the laundry, the dishes, meals to be cooked, lunches to be packed, the mortgage is late. My boss is losing patience with how distracted I am and how I’m always late.
Sometimes I lose my cool. I yell. Or I just get that tone in my voice that shows how annoyed I am. And then I feel so guilty.
So guilty and so tired. I’m just so tired all the time.
It helps to hear how other caregivers feel this way, too. That maybe it’s not great, not okay, but understandable for me to not be as good as I want to be all the time.
“you’re doing the best you can, under difficult circumstances. Try not to be so hard on yourself, okay?” Denise M. G.
“forgive yourself, for not being able to do the impossible and for your very normal feelings. Those are feelings of frustration and they do not lessen the love you have for your parents…I had assumed I had to caregive alone, but then I found that there had been people I could call on for help all along. I should have spoken up.” – Nancy L.
“The hard truth is you can only do as much as you can do. It is terribly hard for us to accept that we cant fix it or do more more more. The best and most that we can do for those we love and care for is to love them and do what we can within reasonable parameters. You are giving them all that you can and you love them you have to accept that.” – Barbara F.
“We all lose it from time to time. Whoever says they don’t probably doesn’t even know they did. Yes, Forgive yourself and move on. Longterm Caregiving is the hardest thing ever to do.” Diane L.B.
“Forgive yourself…..it happens to all of us more than we would like others to know! Being tired and stressed gets to the best of us and few among us are saints…we all do the best we can and just keep going!” – Micki T.
How do you keep your cool? And how do you forgive yourself when you lose it?
Self care — it’s easier said than done.
We’re always being told we should take better care of ourselves, but we rarely get the help we need to actually do that. Here’s how caregivers feel when they’re told they should put their oxygen mask on first:
Sometimes it feels like another criticism thrown at us. Yes, self-care. How dreamy that vision is. How easy that is for others to tell us that is what we need when we are already acutely aware of it. What I really think I would love to have and what I really think would be the most “self care” mindset…is having or knowing that someone ELSE is going to take care of me for a few minutes, even maybe take care of a task, or take one of my responsibilities off my hands for a little while. – Cathy S.F.
We all know we need to take care of ourselves. This is not news to us as caregivers yet everyone who offers this advice to us can’t seem to offer how to do that when the choice we have is “take care of me or take care of our loved one”. I’m going to choose my loved one every time. I think most of us are in the position that if it isn’t ME providing the necessary care, it’s NO ONE providing it and that is just not an option for our loved ones who require total care etc. We do our best to care for ourselves but it’s literally impossible to take time away from our loved one to do so…It’s not noble or martyrdom, it’s just reality, a fact of our lives. So we do our best each day, listen to the unhelpful “advice” from people who will never “get it” until they are in the same position, and continue to find moments in our busy days for our little and glorious bits of self care (while still taking the best care possible of our loved ones 24/7). – Kelly D.
Taking care of myself is looking for the best options and making sure my loved one is safe so I can sleep at night. Trusting others to help and care while looking for what other options are out there to help. The closest family is 10 hours away, so no family meetings or help. I don’t have the answers but I will continue to fight and learn. I am not trying to be noble, I just want what is best so I can sleep. – Julie D.
The suggestions are simply not doable for a lot of us – especially when you ARE the only living family member left, when you are already suffering from a debilitating illness yourself, when you can’t even take a walk around the block because there is no one to sit with your bedridden family member who cannot help themself and constantly has emergencies, etc. Way to put more unrealistic pressure on us that we must be doing it all wrong. It is what it is! – Lemia L.