After losing a son to opioids, one dentist is fighting to change how his profession deals with addiction

After losing a son to opioids, one dentist is fighting to change how his profession deals with addiction

RICHMOND, Va. – On an unseasonably warm Friday morning in October, Dr. Omar Abubaker paced in front of a small lecture hall at Virginia Commonwealth University’s dental school. The 64-year-old oral surgeon, whose sharp gray suit matched his wavy hair, quipped about his caffeine habit as he gave his third-year students a crash course on the… (more…)

Unnecessary trouble

Unnecessary trouble

How do you care for someone who refuses to let you help them?

My mother refuses to have outside help. It needs to be me, her daughter, who helps her. But she really wants a servant.

She raised me to be a woman who’s practical. Who thinks about what people might need and gets it for them. Who does what needs to be done. You’d think that would make me a good caregiver. I want to make things as easy as possible for her.

That’s not what she wants.

She’s been having trouble getting around on her own, even in the house. The doctor suggested we minimize her fall risk. I reorganized the ground floor of the house according to the instructions in the pamphlet he gave us. Rolled up the throw rugs, moved furniture over so nothing was blocking the doorways, anchored the bookcases into the wall in case she grabbed onto them. She was livid. She insisted everything be moved back, safety be damned.

And she keeps falling. She tripped on the rug. At first I thought she didn’t call for help so I wouldn’t know she fell. Perhaps she hoped she’d be able to get herself up and I’d never know, never be able to tell her I told her so. Which I wouldn’t say, but we both are thinking it.

But she can’t get herself up when she falls. She’ll try, though. She will sit there for hours, refusing help, straining and failing to hoist herself up. She won’t use a walker. She won’t make the house safer. Instead, she falls and lays there until she soils herself.

That’s usually when she’ll give up and let me help her to her feet. She’ll wait until she needs to use the toilet urgently before she agrees to let me help her up. And then with the strain of getting up, even with me lifting her, she’ll have an accident on both of us.

I thought she’d learn that lesson the first time and not repeat it. I was wrong. The third time I tried to, delicately, suggest she should let me help her up sooner because of what had happened the last two times. That did not go over well. Apparently it’s disrespectful for me to try to prevent her from having an accident — both the falling and the soiling both of us — but it’s not disrespectful for her to choose to harm herself.

Who has to clean up after this? I do. Who has to take hours from my day to deal with this every time? I do. Hours when I should be doing other things to care for her. I am willing to care for her, but she insists on making this job much more difficult than it needs to be.


What we’re overthinking

What we’re overthinking

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

8 Tips for Gentle Decision-Making for Your Aging Elders’ Care

8 Tips for Gentle Decision-Making for Your Aging Elders’ Care

Caregiving is a relentlessly shifting landscape, predictable only in its unpredictability. Each change requires new research and new decisions. Caregiving is rife with decisions, and at times, some might have the potential for sadness or disagreements.

You may be in a position of being required to make decisions for your loved ones, but the smoothest path may be to help your elders make their own choices. They are vulnerable, losing their sense of being in control of their lives, facing an uncertain future; at our best we, as caregivers, can try to guide and respect their choices.

Your parents or loved ones may not see the future as you do. Most of them did not grow up in a world with self-determined choices. Their lives were scripted: they served in the military, got jobs, married, and had kids. They do not function in a future of possibilities, of “what ifs.” When they start to fail they may only have desperate thoughts of nursing homes reeking of urine and disinfectants.

In my book, While They’re Still Here, I discuss my personal experiences with caring for my aging parents. Becoming their fulltime caregiver was not easy, and there were some bumps along the way, but I was able to find my way and help my parents in a way that worked successfully for all of us. Here are some tips for gentle decision-making when you know the house is on fire and your parents say they don’t mind a little smoke.

Decision making based on the teachings of our childhoods:

1. Respect your elders. Keep your mouth shut and your ears open. When decisions must be made, first listen. Then listen some more. Chat. That’s what you’ll miss the most “later.” Act as an advocate not as the decision-maker. Be as respectful as you would be of your best friend’s parent. I couldn’t begin to fix my parents’ problems until they could explain them, and they couldn’t explain them until they felt their opinions and ideas would be valued by me. Maybe I knew I was actually nodding in disbelief, but at least they felt heard and thought I was agreeing. I hoped by the next day I could come up with a reasonable, logical proposal rather than the blunt retorts running through my brain right then.

2. Patience is a virtue. Haste makes waste. Proceed as slowly as circumstances allow. Present an idea and let it soak. I often reminded myself that it took my parents eighty years to create their problems, and I wasn’t going to solve them overnight. If you’ve walked a lifetime on a rocky road together, maybe all you can do today is help take some gravel out of their shoes. But it will matter tomorrow when their feet aren’t so sore.

3. Because I said so. Time has changed their memories. Let them tell their stories the way they want to be remembered. Let them be the people they wish they’d been. Find the pearl in the bad memory. If in the worst year of your life, the only highlight was Uncle Henry’s goat eating all the laundry off the line, laugh it up. Uncle Henry bought you all new clothes; then your dad got the goat to eat the threadbare old couch . . .Let go of the past and start decision making from where they are now.

4. It’s about time you grow up. Be the grown up, even if you have to leave the room and scream in a pillow. Your roles have reversed. Be the parent everyone wished they’d had. Maybe yours weren’t the best parents way back when, but be your best now. Let time heal.

5. If you don’t have something nice to say, don’t say anything at all. Avoid potential regret. Frame every thought with as much kindness as you can muster. You can’t ever take back harsh words. If you are always doing the best you can, then later you can trust that you did the best you could. This promotes sound sleep “later.”(Do not expect to sleep well while caregiving.)

6. Hold your horses. Approach decisions as if no decision is imminent. Try not to give opinions. “Do you think you’ll still want to stay here someday when you don’t want to drive anymore?” Put it in the future, empower with “don’t want to drive,” not “can’t drive.” Try to be vague. While you’ve been up all night on your computer trying to find solutions, they’ve only been frozen in fear. You could continue the conversation with, “I kinda think I’d want to be somewhere that they had transportation, like where Aunt Hilda lives.” Then make a sandwich or open the mail; just be normal. Let your elder start to think about it. In an hour or a day or a week, they may say, “Can I afford to live somewhere else?” Be their helper, not their overseer. Just casually respond, “I’m not sure. But we can check it out just so you’ll know if it’s an option.” Your adrenaline may be shooting through you while your brain makes a to-do list, but act as if it’s a dinner choice. Italian or Thai? Anything else will build pressure.

7. We’ll cross that bridge when we come to it .Try to understand the priorities from your loved one’s frame of reference. What can they no longer do right now—Pay bills? Grocery shop? Clean the house? Get to the doctor? What are they grieving right now? Stand in your parent’s shoes and guide decisions from their perspective. There is no way to plan for the unknown anyhow, so you may as well just deal with what is in front of you.

8. Let nature take its course. You can’t stop this train called aging or prevent it from derailing no matter how hard you try. But with compassion and kindness as your engineer, you may be able to enjoy the scenery as you take this last ride with your elder. Just remember, they’ll be deciding the route, not you.

Aging and elder care can be intimidating for elders and caregivers alike. However, it can be peaceful if you keep in mind your elder’s fears, concerns and needs, and help them take as active a role as they are capable of taking in their care. By following the tips above, you can help ease your elders’ worries, foster positive conversations on their needs and care, and reduce some of your own stress and tension as their caregiver.

Patricia WilliamsPatricia Williams grew up in Elyria, Ohio surrounded by relatives and friends, then spent a few unforgettable years in Cumberland, Maryland. She is now retired from a long and satisfying career as a dental hygienist and lives in Olympia, Washington, where she has enjoyed gardening, crafting, tracing genealogy, reading, caring for pets, and entertaining visitors on the same parcel of paradise since 1977. She lives with her spouse, Katy Murray. Her new memoir, While They’re Still Here, releases in November 2017. Learn more about Williams at

Some tax-exempt hospitals are lax at providing charity care and accountability

Some tax-exempt hospitals are lax at providing charity care and accountability

Garnishing wages. Turning over accounts to collection agents. Withholding services until an individual’s ability to pay is proven. These might seem like the practices of a big bank in the news for financial scandals. Instead, these tactics have surfaced at unexpected places: some of the country’s nonprofit, tax-exempt hospitals. A woman seeking treatment for leukemia at… (more…)

What do you wish other people understood about caregiving?

What do you wish other people understood about caregiving?

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.

“Did You Have a Good Summer?”

“Did You Have a Good Summer?”

Maybe it’s a Midwestern custom, but friends keep asking me if I had a good summer. Every time I’m asked this question I want to groan. I’m my disabled husband’s primary caregiver and, for us, summer is like any other season of the year. There are no changes from our normal routine.

My husband is wheelchair-bound and just developed asthma. Although a paid caregiver comes for two hours each morning to get him up, I’m in charge of daily plans, medication management, making medical/dental appointments, driving him to these appointments, home/garden maintenance, our household budget, and paying bills.

Did I have a good summer? Well, we didn’t go swimming or fishing, didn’t fly to Europe (I’m lucky to get to the grocery store), or take a long road trip because my husband can’t do these things. However, we did enjoy the warm weather, summer rain storms, watching birds come to the backyard feeders, dinners with family members, and reading stacks of books.

By these standards, our summer was stellar.

From the outside, caregiving looks pretty straightforward. We provide the basics for our loved one—a safe home, comfortable bed, decent bathroom, delicious, nourishing food, and interesting activities. But as Gail Sheehy notes in Passages in Caregiving, “The world of caregiving is initially as foreign to most people as life on another planet.”

We’re not just on another planet, we’re in deep, craggy trenches. To Do lists keep getting longer, we don’t get enough sleep, lose touch with friends and feel isolated, work our way through the insurance maze, juggle funds constantly, and worry about spiking health care costs. Stress is part of life. If you’re caring for a disabled loved one, as I am, or caring for a chronically ill loved one, you understand this stress.

Caregiving doesn’t guarantee happiness. Your loved one may complain about the food you prepare, for example. I fix tasty, colorful meals for my husband, but he can’t taste them. The medications he takes have dulled his sense of taste. Coming up with activities for him is also a challenge. Today, I’m driving him around town in our used wheelchair van to see new construction sites. We live in Rochester, Minnesota and the city is booming. He is looking forward to the tour and it will get him out of the house.

How do I answer the question, “Did you have a good summer?” Instead of giving a lengthy explanation, or going into health care specifics, it’s easier to smile and say  “Yes.” I’m spending my days with the husband I love so much.

How has caregiving changed you?

How has caregiving changed you?

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!!!!

Advocating for a family member in the hospital

Advocating for a family member in the hospital

It’s incredibly stressful to have someone you love in the hospital. Not only are you worried about their health, it almost seems like hospitals were designed to be as stressful as possible! Constant interruptions, florescent lights, beeping and blinking machinery, and incredible levels of crowding guarantee we’re all on edge.

Sometimes, especially with teams of medical staff coming and going at random, I wonder if my son is getting the best care. Are these staff members familiar with his medical history? Do they have all the information they need? Are they ordering tests he doesn’t need and skipping over ones that might be more appropriate? Medical staff are rushed and exhausted…and only human.

After more than a decade of being in-and-out of hospitals with my son, I feel confident in my ability to advocate for him to get the best care possible.

I always keep a notebook with me. I take notes when I’m talking to the doctors, including their names and titles, so I can keep track of things. I ask questions of the doctors at the time, but I also have the details I’ll need to look things up on my own later and ask follow-up questions.

I ask staff members if it’s okay to contact them with questions and how they prefer to be contacted. If someone is okay with me emailing them questions I make sure not to abuse the privilege and be respectful of their time.

I stay calm. Yes, it’s an emergency for me and my son is my top priority. But I recognize that’s true of just about everyone in the hospital. Hospital staff need to balance the needs of all of their patients, so I’m firm in asking for the care he needs, but also remember that things can’t always happen on the timeline I’d like.

I’m persistent. It’s tough to find the right balance of making sure things aren’t forgotten without becoming that mom.

I’m open to suggestions. My son and I know his health best, but we’re in the hospital for a reason — these people are experts, too. It can be difficult, but I try to make sure we’re working with his medical team and not just trying to convince them to take the course of treatment we think is best.

I appreciate the staff. Hospital staff are people. They have good days and bad days, too. I try to remember this, thank them for their help, and cut them slack when they drop the ball. Treat others like you’d like to be treated.

Susie Miller

I see you

I see you

A few weeks ago, I was at the beach and I saw a young woman walking with her two little boys and her husband.  Her husband was disabled, walking with a cane and appearing to have lost some muscle function in his arms and legs.  I keep thinking about the woman and what I would have said to her at the right time, in the right place.  This blog post is for that woman, and the other young people who are caring for an ill or disabled spouse, while raising a family.

To The Woman on the Beach:

I see you.

I see you enjoying a day in the sun with your family.

I see you including your husband, who is clearly finding it a challenge to walk in the sand.

I see you take his hand, silently letting him know you are there for him.

I see your little boys, enjoying the sand, seashells and surf like all little boys would at the beach, happily oblivious to what you and he are going through.

I see you trying to make life as normal as you can…for your boys and for your husband.

I see you putting on a happy face, even when you aren’t happy.

I see your concern for the man you love.

I see your heartache and your heartbreak…watching the man you love suffer, wondering what your future will be like, wondering if you will someday be alone.

I see your worry…worry for your husband and his future, worry for your boys and their future, worry for yourself and your future.

I see your exhaustion.

I see your resentment and your guilt.

I see your loyalty.

I see your commitment.

I see you lying in bed in the wee hours of the night, waiting for the darkness to pass and the light to return.

I see your sadness.

I see you taking one step after another, walking through the storm, hoping that someday there might be sun again.

I see you trying to find happiness wherever you can.

I see you being grateful for all the little things.

I see you wishing for things you may never have.

I see you laughing.

I see your tears, cried silently when you are alone.

I see your appreciation for the moments you have together.

I see you taking care of everyone’s every day needs, while putting your own aside.

I see you wishing you could have time to yourself.

I see you keep going even when you think you can’t.

I saw you on the beach that day.  I saw you, and I want you to know, I understand.


What do caregivers need to know?

What do caregivers need to know?

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


5 ways to honor yourself and your loved one after loss

5 ways to honor yourself and your loved one after loss

Grief is often a foreign feeling for most until they are faced with it head on. When you lose a loved one, it can be hard to do much of anything, but life must go on. From the heirloom furniture passed through generations to old love notes, choices are thrust into your lap whether you are ready or not. Decisions are immense or can be something as simple as what to do about the food in your loved one’s cabinets.

For some, settling an estate and sorting through the items left behind brings closure.  For others, it can make a difficult time even worse. Here are five tips to honor your loved one and yourself during this difficult time:

 Take a moment.

After the initial loss, grief is forefront to other emotions and life feels chaotic. Advice comes from every direction whether you ask for it or not. Many will tell you to hurry through the sorting and delegating of items. Personally, I advise clients to take a moment, and a deep breath before you make hasty decisions. This will prevent future family arguments and possible regrets.

If finances and circumstances allow, give yourself a good 30 days before jumping into any major decision-making in the dissolution of your loved one’s legacy. Also, you need to use this time to move through your grief and find healing. If you push it away or ignore it, grief will manifest in disruptive and painful ways. This is your time to process it in its freshest state.

Don’t do it alone.

If your family works well together, use this time to revisit old memories. Choose what physical talismans of those memories you wish to hold onto.

If you find yourself explaining and justifying your choices to your friends or family, they are not the right ones to assist you during this time. Look for someone who is empathetic. Try to involve individuals around you that allow you to make choices without judgment.

Ideal supporters at this time are organized and show up with an open and clear mind.

Honor their memory.

Of the items you will keep or distribute to friends and family, there is likely to be a surplus of belongings that can be useful to someone not in the immediate family. Not every member of the family even wants to take your loved one’s items. But who should get these items?

Focus on local organizations. Small non-profits and thrift organizations can thrive from your donations. Make choices that feel good and honor the wishes of your loved one. Think about organizations that were important to them, and their beliefs. If they did not have a connection with any organization, what charities are important to you? Through selecting organizations that resonate with you or your loved one, the entire process can be a healing one that benefits many.

Keep track of your decisions.

Six months to a year after you dissolve your loved one’s material legacy, when the dust clears from the darkness, different individuals might inquire about particular objects. How about dad’s golf clubs? Mom’s crystal glasses?  The family photos?

This is where your helpful, empathetic friend comes into play again. Have them help you keep track of your decisions. You are then able to look back and know what decisions you made. Knowing what went where will be incredibly efficient in the long run.  List each item and assign it a number,  then add the location the item came from and who/where the item is going. This offers peace of mind, and prevents future arguments.

Take care of yourself.

This process is difficult, but you need to prioritize your needs, too. Your basic needs such as hydration, nutrition, and rest are essential during this period. You might not feel like doing much of anything, but covering the basics will preserve your future well-being and health. It is easy to be distracted by the emotions and the intimidating amount of work that lies ahead.

Sickness is common in this period, as your body responds to the grief and stress. Don’t neglect your health, job, friends, other family members and the need to grieve. Taking care of yourself not only honors you, but your loved one as well.

Laura Olivares is founder of Nothing Forgotten, Inc., which guides and manages all aspects of the downsizing or dissolution of a loved one’s material legacy.  It is the first and only after-death service that repurposes, recycles and resells up to 95% of the personal belongings back into the community.

My loved one isn’t a burden

My loved one isn’t a burden

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

Caregiver’s Lament: Rescue Me

Caregiver’s Lament: Rescue Me

Rescue me, for an afternoon
or an hour, or a few minutes.
I no longer want someone
to come into my life
and take over all my problems
and become my hero
and the owner of my life.
I don’t want that.
I just need someone
to rescue me for a few minutes
so that I remember that it’s possible
for somebody besides me
to do some of the things I do.
So that I don’t feel
totally indispensable
to the life of someone else.
And if you would rescue me
for five minutes
and someone else would rescue me
for five minutes
then, if enough people rescued me,
I would have the strength
to rescue myself the rest of the time.
And I could be
my own hero.
 by Cynthia Rush
Caregivers – Playing a Crucial Role, Yet Held in Low Esteem

Caregivers – Playing a Crucial Role, Yet Held in Low Esteem

Though it has many settings, and spans many decades, my new novel, Women Within, takes place primarily in a retirement home. The three main characters in the book, a ninety-four-year-old woman who slips back and forth through the years of her life, and her two aides, drive the plot.

I wanted to write a novel about the female experience. That meant addressing a lot of challenging issues like sexual assault; a woman’s status compared to a man’s (always lower); being an unwed mother; the impossible standards of the ideal female body that no one can really meet. These themes are woven throughout the book, along with another that at first I didn’t specifically identify.

In Women Within, this particular subtext is caregiving. The old lady awash in the past is Constance Maynard, a retired professor of history. Eunice Fitch, a fifty-something recluse with a big heart, has been taking care of people since she was a teenager. Her need to coddle, cosset, and even pamper is great on the job, but when it comes to relations with men, it’s a disaster. She enables brutes and swindlers without even realizing it. That’s her personal subtext—the downside of being too willing to soothe.

Eunice’s partner on her daily rounds is Sam (formerly Samantha) Clark whose big hands and strong muscles make her an ideal worker. Though only in her twenties, Sam, too, has done her share of caregiving, primarily to her damaged mother, protecting her in what she will soon learn has always been a vicious lie, a concoction about how Sam came into the world.

These women are poorly paid, almost as invisible as their charges. Maybe it’s because their work requires no special training, just a certain nuanced sensitivity about what people need, which can’t really be taught. Maybe it’s because they don’t generate income or profits for their employers. A retirement home makes its money from its residents, and while they state a commitment to a certain level of quality care, presumably ensured by people like Eunice and Sam, that standard is often goes unmet.

I speak from personal experience. My father spent his final years in a retirement community that was touted as having exquisite amenities. He wasn’t mistreated, but nor was he nurtured. He was sustained. As his interest in life declined, as he disconnected from people, the interest shown him also seemed to wane. Human psychology no doubt suggests that one is likely to be more engaged with someone who shows a reciprocal interest. That said, would not that engagement be encouraged with a bigger paycheck?

Caring for young children requires a great deal of engagement, too, which I suspect most people bring to that job, but those folks earn pretty little. Again, the problem seems to be the idea of generating income. Teaching a child the alphabet, or the basics of proper behavior and courtesy towards others is essential, but doesn’t generate income the way writing a computer code might, or selling a house in a hot market. This is short-sighted. Many studies show that children who get good quality care when young go on to be good wage earners and successful citizens. It’s a long-term commitment where kids are concerned, yet the people who nurture them outside of the home aren’t valued very much.

I’m sure much of this has to do with the fact that by and large caregivers are women. I suspect that the low status jobs that men land in, like unskilled physical labor, pay more. I could make this a point of research, of course. I could dust off my Economics degree, and polish up my MBA, and make a good, thorough study, but then where would my fictional characters be? Waiting for me to fill them in and round them out.

And that returns me to my three retirement home ladies. Before Constance goes downhill once and for all, she decides to turn her former home into a community center to help disadvantaged women. After her death, Eunice launches a home care business of her own, putting to good use everything she’s learned in over thirty years at Lindell. And Sam – well, Sam’s an interesting case. The retirement home seems to be just a step along a widening path. She comes into a little money, and decides to go back to school to study poetry. Her favorite author is Sylvia Plath, whose suicide reinforces for Sam that unhappy marriages are perilous things, even as she finds herself falling in love, and preparing to take on yet another caregiving role.

I close with a plea for caregivers everywhere. Give them their due. See their value, not just in a private setting, but in our larger society. Consider where we would all be without them. Understand that not everything is purely tangible. Consider the intangible, the behind-the-scenes efforts that build character and promote empathy. Imagine what the world would be like, with more people garnering well-deserved respect for the service they perform every day for another human being.

Anne Leigh Parrish

What caregivers want more of

What caregivers want more of


Free Time

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 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

Community Support

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.

What’s your best caregiving trick?

What’s your best caregiving trick?

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

Accept limitations

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.

Despite Advance Directive, Dementia Patient Denied Last Wish, Says Spouse

Despite Advance Directive, Dementia Patient Denied Last Wish, Says Spouse

Bill Harris is blunt: For more than a year, he has been trying to help his wife die.

The 75-year-old retired tech worker says it’s his duty to Nora Harris, his spouse of nearly four decades, who was diagnosed with early-onset Alzheimer’s disease in 2009.

“Let me be honest: Yes. It’s what she wanted,” he said. “I want her to pass. I want her to end her suffering.”

Nora Harris, 64, a former librarian, signed an advance directive after her diagnosis to prevent her life from being prolonged when her disease got worse. Now, her husband said, she’s being kept alive with assisted eating and drinking against her stated wishes.

The onetime Virginia Woolf scholar and world traveler can no longer communicate, recognize family members or feed herself. She’s being spoon-fed at Fern Gardens, an assisted living center in southern Oregon, after a local judge ruled against Bill Harris last summer, concluding that state law mandates that she continue to receive help.

“She did not want to be in a position where somebody had to totally take care of her,” Bill Harris said. “When nature, through the disease, basically said, ‘I can’t feed myself,’ Nora’s position was, that’s it. Let nature take its course.”

In recent weeks, Nora Harris has been gaining weight, climbing from less than 100 pounds to 102 or 103 — just enough to keep her stable. Bill Harris learned that, in addition to three state-required daily meals, staffers have been feeding Nora optional snacks, too.

Now he’s considering going back to court to try to stop the snacks in an effort to let Nora Harris lose enough weight to end her life. Twice before, in 2015 and 2016, she fell to 90 pounds and was enrolled in hospice, with six months or less to live, only to rebound, he said, when staffers coaxed her to eat.

“You’re denying Nora the right to die on her terms,” Bill Harris said. “It’s not a right-to-life issue, it’s a right-to-die issue.”

The southern Oregon case underscores the complexity surrounding the use of advance directives for people with Alzheimer’s disease and other dementias.

Advance directives are legal documents that spell out a person’s end-of-life wishes if they are unable to make their own decisions.

These directives generally allow named agents the power to withdraw artificial hydration and nutrition in the form of feeding tubes, for instance. But when that same nourishment is offered by hand, several states, including Oregon, draw a line, said Thaddeus Mason Pope, director of the Health Law Institute at Hamline University in St. Paul, Minn., and an expert on end-of-life law.

Across the U.S., the more than 5 million people living with dementia are typically encouraged to put their end-of-life wishes into writing early and to pick a trusted person to carry them out, said Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association.

That’s no guarantee, however, that those requests can — or will — be honored. In Nora Harris’ court case, her advance directive and testimony from her husband, her daughter and two close friends all indicated that she wouldn’t want anything to prolong her life.

“That court decision basically condemned Nora to the full extent of the Alzheimer’s disease,” Bill Harris said. “They gave her no exit out of this situation.”

But Eric Foster, the court-appointed lawyer who represented Nora Harris, argued that her directive doesn’t specifically mention food and drink presented by hand. Because she now opens her mouth and swallows when food is offered, she has, in essence, changed her mind, he said in a court document.

Bill Harris said that opening her mouth is a reflex, an automatic response to six decades of habit.

Nora Harris signed an advance directive stipulating no care to prolong her life, but her husband says state law is forcing her to be spoon-fed against her stated wishes. (Jim Craven for KHN)

Kallmyer, with the Alzheimer’s Association, said it’s hard to tell whether someone with dementia is acting out of reflex or desire. The association recommends against tube-feeding for patients with dementia, while also advising what they call “careful hand-feeding.”

“If they’re eating and they’re opening their mouth, it’s difficult to say they didn’t want it,” she said.

Foster’s stance was backed by a judge who sympathized with Bill Harris’ plight, but sided with Fred Steele, Oregon’s ombudsman on long-term care. Steele said Nora Harris’ advance directive wasn’t specific enough to advise Fern Gardens staff to withhold food and water.

“Our concern was just focused on the administrative rule,” he said. “If the rule exists to prevent a facility from committing elder abuse, our focus was on what the rule required. The rule requires the resident be cued with food and they have the choice of eating or not eating.”

Lynn Rawlins, the center’s administrator, said her hands are tied.

“We have to feed them until they stop opening their mouths,” she said before a tour of the center last month. “Unless feeding them causes more harm from aspirational pneumonia or a choking factor. We still have to feed them, even if they choke.”

Nora Harris is a small woman with graying brown hair and dark, confused eyes. On a recent 88-degree summer afternoon, she wore a maroon fleece sweater, gray sweatpants and mismatched socks.

She spoke in urgent whispers, syllables spilling out, unlinked from words.

Bill Harris put an arm around her shoulders reassuringly.

“Absolutely,” he said. “Of course.”

But he added later: “It’s difficult visiting her, especially when you know what Nora was like before.”

That’s the thorny issue at the heart of advance directives for people who lose the capacity to make their own decisions, said Pope.

If Nora Harris were aware enough to refuse food, instead of passively accepting it, there would be no question.

“Do we listen to the previous Nora or to the current Nora?” Pope said. “That is, unfortunately, not legally or ethically answered well.”

Bill and Nora Harris met at the San Francisco War Memorial Opera House in the early 1970s and launched a four-decade marriage that included world travel. Nora Harris was a librarian and a Virginia Woolf scholar who told family and friends she never wanted to be utterly dependent on others for care. (Jim Craven for KHN)

A bill introduced in the Oregon Legislature last year would have allowed an appointed committee to amend the state’s advance directive form. Critics, including Oregon Right to Life, an advocacy group, opposed the effort, arguing that it paved the way for mistreatment of vulnerable people, including dementia patients like Nora Harris.

“OR legislators move to allow starving, dehydrating the mentally ill,” one headline read. The bill passed the state Senate, but failed to advance.

Nora Harris’ situation also raises issues surrounding a controversial method of hastening death for seriously ill people known as “voluntarily stopping eating and drinking,” or VSED. It causes death through dehydration, usually in seven to 14 days.

VSED is being used by a small but growing number of determined patients with the help of their families, Pope said.

In Washington state, board members at End of Life Washington, a nonprofit that supports medical aid-in-dying, created an advance directive focused on people with dementia. Soon the group plans to release a new form for people who want to leave instructions for stopping eating and drinking at the end of life.

Medical experts say VSED can be a relatively painless, peaceful death. In the absence of nutrition and hydration, the body produces opiate-like substances that blunt hunger and thirst. With additional painkillers, comfort can be ensured, they add.

An analysis of VSED research concluded that “terminally ill patients dying of dehydration or starvation do not suffer if adequate palliative care is provided.” A 2003 survey of nurses in Oregon who helped more than 100 patients with VSED deaths said they were “good” deaths, with a median score of 8 on a 9-point scale.

Unlike aid-in-dying laws or rulings now in place in six states, VSED doesn’t require a government mandate or doctor’s authorization.

But the question of whether people with dementia can authorize a VSED death in advance, to be enacted later, when they’ve lost the capacity to choose, remains legally uncertain, Pope said.

“We don’t have statutes, we don’t have regulations, we don’t have a court case,” Pope said. “We have this thing where you’re allowed to refuse medical care. But this is basic care. Are you allowed to refuse basic care?”

For now, the answer in the case of Nora Harris is no.

That’s frustrating for Bill Harris, who says the emotional — and financial — toll of her illness has been enormous.

“The person you know, the person you married, who you love, is basically going away, fading away before your eyes,” he said.

He had planned to retire from his job at Wells Fargo bank at age 67 but worked an extra eight years to pay for the costs of Nora’s care, which total more than $80,000 out-of-pocket each year. Because she fell ill at age 56, she didn’t qualify for Medicare or other government help.

Worse, though, is seeing his once “extremely bright” wife wandering the halls of the assisted living center, “like a zombie,” he said.

“Nora was quite enamored of Virginia Woolf,” Bill Harris said, referencing the British author who drowned herself after years of mental illness.

“If she had known this would happen, she would have put rocks in her pockets and jumped in the river. This is absolutely where she never wanted to be.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

Is caregiving an act of love or obligation?

Is caregiving an act of love or obligation?

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.

Medication management for seniors

Medication management for seniors

If you help care for an aging loved one, or are advancing in age yourself, you are probably aware of the importance of medication management. As people age, they can develop multiple chronic conditions, which may require several long term prescriptions. In fact, nearly 40 percent of elderly adults living in their own homes are prescribed more than five medications. In turn, follows an increased risk of drug interactions, side effects, and accidental missing or doubling of doses. Medication management is a set of practices to prevent these events from happening. Polypharmacy, the term used to describe the usage of five or more drugs at once, can pose potential dangers for aging loved ones. Adverse drug events, or ADEs, due to negative effects of polypharmacy are to blame for 700,000 emergency room visits and 120,000 annually, resulting in $3.5 billion in medical costs across the country. Comprehensive medication management is no small task, and here are a few tips to get you started.

Courtesy of BrightStar Care

Vets bill to keep veterans choice program afloat is signed

Vets bill to keep veterans choice program afloat is signed

Donald Trump signs vets bill to keep veterans choice program afloat

President Trump on Saturday signed a bill that will pump funds into the Veterans choice program to keep it up and running, while Washington continues to fight over how best to give veterans the care they earned – but which the government has sometimes failed to deliver. Approved in the wake of the wait-list scandal that… (more…)

Glen Campbell’s doctor discusses his struggle with Alzheimer’s

Glen Campbell’s doctor discusses his struggle with Alzheimer’s

Fans ‘didn’t care if he messed up’: Glen Campbell’s doctor discusses his struggle with Alzheimer’s

Glen Campbell’s decades-long musical career came to an end Tuesday, when the 81-year-old country music superstar died after a six-year struggle with Alzheimer’s disease. He leaves behind a sprawling songbook and one candid documentary, 2014’s “Glen Campbell … I’ll Be Me,” which follows the singer as he deals with his diagnosis and embarks upon a farewell… (more…)

When betrayal is freedom

When betrayal is freedom

For fifteen years I cared for him.

His accident was days after our engagement. My mother pulled me aside and said I could still walk away if I wanted. I knew it would be a hard road of nursing him back to health. No one knew if he’d recover or what recovery would mean. It meant putting my career on hold. Putting my family second. Putting my fiancee first in all things.

And I did. I stayed with him. For weeks in the hospital. For months of being home bound as he regained his strength.

I married a man who was still, we hoped, getting better. He has gotten stronger. Or perhaps simply better at adapting to his circumstances.

For fifteen years we lived like this. With me bearing the burden of responsibility for both of us in so many ways. With me still letting him be the man of the house. With me always putting my husband first.

I finally decided I couldn’t live like this anymore. With my identity all wrapped around his. Subsumed by his.

My nephews are in that phase where they’re obsessed with favorites. What’s my favorite food? Color? Hobby? Animal? I realized I didn’t know any of the answers for myself any more. But I knew them all for my husband.

I didn’t do anything dramatic. I decided to join the local gym and take a class once a week with some other ladies from church. To make sure we attended church together every week. To take a little time each week doing something for me, even if something else feels more important. That’s three or four hours a week for myself, after fifteen years of ignoring myself in favor of someone else.

He didn’t like it. He met someone new at church. I should have known something was wrong when he stopped trying to make excuses to not go. I was so excited when he stopped protesting, when he started getting ready on his own. I was thrilled to see people every week, feel connected to something. He felt connected to something else.

The thing is, part of me is thrilled. To be free, finally.

Sometimes the bitterness wells up in my throat. I gave so much to him and it was never enough. Does he even realize what I did for him? But I know it doesn’t matter. I know what I did. I know how much of myself I’m willing to give. And I know he would never do that for me.

It’s as if a weight has been lifted off of me. It has been, really. The weight of a man who I’ve supported all of these years.

Moving forward, I can finally support myself.


Depression Among Heart Attack Survivors Can Be Deadly, Yet Is Often Ignored

Depression Among Heart Attack Survivors Can Be Deadly, Yet Is Often Ignored

Clyde Boyce has been hospitalized 14 times in the past four years.

Boyce, 61, survived two strokes and five operations to unblock arteries around his heart, including three procedures in which doctors propped open his blood vessels with stents. He takes 18 pills a day and gets injections every two weeks with a powerful drug to lower cholesterol.

Yet the disease that came closest to taking Boyce’s life wasn’t a heart condition. It was depression, which led him to attempt suicide twice in the year after his first surgery.

One in 5 people hospitalized for a heart attack or chest pain develop major depression — about four times the rate in the general population, according to the American Heart Association. One in 3 stroke survivors become depressed, along with up to half of those who undergo heart bypass surgery.

Heart disease patients who become depressed are twice as likely to die within the following decade as other patients, according to an unpublished study presented in March at the American College of Cardiology’s annual meeting.

Depression increased the risk of death more than any other risk factor in the study — even smoking, said lead author Heidi May, a cardiovascular epidemiologist at the Intermountain Medical Center Heart Institute in Salt Lake City.

Relatively few heart patients die from suicide.

Most often, depressed heart attack survivors die of physical causes, partly because they’re less motivated to take care of themselves and take medication as directed, said Dr. Martha Gulati, a spokeswoman for the American College of Cardiology.

People suffering from depression are also more likely to smoke but often less likely to exercise and follow a healthy diet than those who are not depressed, Gulati said.

“You may be told to change your diet, but if you’re depressed, you may think, ‘This is too overwhelming. I can’t even process this information right now,’ ” said Kim Smolderen, an assistant professor at the University of Missouri-Kansas City.

The American Heart Association has recommended that cardiologists screen all heart attack patients for depression, using a short questionnaire, since 2008.

Yet nearly a decade later, relatively few cardiologists screen patients for depression, Smolderen said. In May, she published a study in Circulation of younger heart attack survivors, most of whom were women, showing that only 42 percent of depressed heart attack patients received treatment.

Overall, only half of all Americans diagnosed with depression receive care, according to the National Institute of Mental Health.

Many cardiologists say they don’t have the time or the expertise to handle mental health care, Smolderen said. Critics note there’s little to no evidence that depression screening prevents additional heart attacks.

Yet many doctors also fail to refer patients to cardiac rehabilitation — a program of supervised exercise and education — which has been shown to both reduce depression and help prevent heart attacks and deaths, according to a 2015 study in JAMA Internal Medicine.

Although the American Heart Association strongly recommends cardiac rehab, doctors refer only 2 out of 3 heart attack survivors for the program, the study found.

A fraction of patients referred to the program — which involves three sessions a week for 12 weeks — actually show up. Due to cost and other barriers — such as long drives to hospital rehab centers — just 23 percent of patients attended one or more sessions, and 5 percent completed all 36 recommended sessions, the study found.

Cardiac rehab programs include stress management and teach relaxation techniques and coping skills similar to those used in some types of depression therapy. The programs can reduce the risks of heart attack more than standard rehab.

In a three-year study published in Circulation last year, which included heart patients ages 36 to 84, nearly half of patients who didn’t attend cardiac rehab died or had a heart attack, stroke or hospitalization due to chest pain, compared with 33 percent of those who attended rehab.

Among those whose rehab included stress management, only 18 percent suffered one of these heart-related complications, the study found.

Ignoring The Warning Signs

Boyce — who said depression sent him into rages that tested his marriage — said no one screened him for mental illness after his heart procedures, although he had suffered several debilitating depressions since adolescence.

He wasn’t prescribed antidepressants, Boyce said, until after his first suicide attempt.

“The system failed him,” said psychologist Barry Jacobs, a spokesman for the American Heart Association, when he heard Boyce’s story. “What you’re describing is not the way it’s supposed to work.”

After Boyce’s second heart procedure, he stopped taking his heart medications for five days — a move that his doctors viewed as a suicide attempt. His doctor committed him to a state psychiatric hospital for almost a week, prescribed medication and referred him to a psychiatrist.

Yet Boyce’s depression deepened as the bad health news piled up. Doctors diagnosed heart rhythm problems that required a pacemaker; congestive heart failure, caused when weakened heart muscle allows fluid to build up in the lungs; as well as asthmatic bronchitis, which affects the lungs. Boyce began to dread that he would suffer a fate similar to his mother, who died after six months in a coma, brought on by a long battle with heart disease.

A year after his first suicide attempt, Boyce tried to overdose on prescription medication. His wife found him and took him to the hospital, where doctors committed him to a psychiatric ward.

“Everything was happening so fast,” said Boyce, a former advertising executive from Murchison, Texas, who retired due to his health problems. “I was just convinced I was going to die. I thought to myself, ‘I’m going to end up on a ventilator, unconscious, just like my mother.’ ”

Boyce, 61, of Murchison, Texas, shows his smallest and largest pills — two of 18 he takes every day for various conditions. (Sarah A. Miller for KHN)

Boyce received help from a variety of sources: medication; counseling with a psychologist; a “mindfulness” stress reduction program, which borrows techniques used in meditation; and cardiac rehabilitation.

Exercise helped him feel stronger and less disabled, Boyce said.

“I do think the rehab raised my spirits … feeling like I could still do some things,” Boyce said.

What helped Boyce turn the corner, he said, was a conversation with God.

“It was the night before my third or fourth operation, and for some reason, I was sure I was not going to live through it,” Boyce said. “I said, ‘God, all I ask is that you give me one more day, and I will try to be a better man every day.’”

Boyce lost his fear of death. Although he occasionally still gets depressed, Boyce said, he’s able to manage his fears and anxieties better than in the past.

An Expensive Problem To Ignore

Cardiologists are divided about whether to screen heart patients for depression, but many primary care doctors have embraced the idea, said Dr. Ken Duckworth, medical director for the National Alliance on Mental Illness.

Both the American Academy of Family Physicians and the U.S. Preventive Services Task Force, an expert panel that advises Congress on health care, now recommend that doctors screen all adults for depression. The family physician group also singles out heart attack survivors for depression screening.

Studies increasingly suggest that the most effective care comes from addressing physical and mental health conditions together, rather than forcing frail patients to make separate trips to a variety of specialists, Duckworth said.

Successful approaches have involved “packages of care,” rather than individual services, said Dr. Bruce Rollman, a professor at the University of Pittsburgh School of Medicine.

The team approach is key.

In an approach called collaborative care, mental health nurses or social workers serve as care managers, who reach out directly to patients, often by phone, to educate them about their disease, suggest ways to manage their depression and make sure that treatments are working, said Dr. Mary Whooley, director of cardiac rehabilitation at the San Francisco VA Health Care System.

Care managers work with primary care doctors to quickly adjust patients’ medications or other treatments as needed. They consult with a psychiatrist, often over the phone, Whooley said.

“You can’t stay home and get depressed … they won’t let you,” said Dr. Anita Everett, president of the American Psychiatric Association. “They reach out to you.”

A 2014 study in JAMA Internal Medicine found that collaborative care could be delivered over the phone. Patients in the study had blocked arteries, heart rhythm problems or heart failure.

Even on the phone, care managers “develop a trusted relationship with our patients,” said study co-author Dr. Bruce Rollman, a professor at the University of Pittsburgh School of Medicine.

An earlier study of collaborative care, which focused on patients who had undergone bypass surgery, found that telephone care not only improved depression, quality of life and patients’ physical functioning, it saved over $2,000 a year per patient. Rollman is now studying ways to treat depression and heart failure together.

Keeping depression under control can save money if patients stay healthy and spend less time in the hospital, Rollman said.

Depression costs the U.S. more than $210 billion a year, with much of the cost coming from reduced productivity at work, according to a 2015 study.

“There are very, very few things in health care that save money,” Rollman said. “A mild decrease in depression led to a big decrease in cost.”

Officials at the University of Pittsburgh Medical Center Health Plan were impressed enough by the results to include depression screening as part of a checklist of care for patients who are sent home after a heart attack.

Medicare, the federal health insurance program for Americans age 65 and older, began paying doctors to deliver collaborative care in January. Medicare has covered depression screenings in primary care settings since 2012.

In that time, Medicare payments for depression screening have grown from $1.7 million a year to $9.5 million a year, according to a Kaiser Health News analysis. While those screenings make up a small fraction of Medicare’s annual budget of $646.2 billion, Duckworth called the services “a noteworthy trend in the right direction.”

Elizabeth Lucas contributed to this story.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

Featured image courtesy of Time to Change.

Alzheimers, Loss, and What You Can Do to Help

Alzheimers, Loss, and What You Can Do to Help

Impacting roughly 5 million senior Americans, Alzheimer’s has made a name for itself in the elderly community. Little is understood about the cause of the disease and even less is known about the solution. What we do know is that it’s effects are heart-breaking.

Disrupting basic cognitive functions, altering personalities, and clouding memories, Alzheimer’s Disease is simply explained as the decline of the brain. It primarily affects the elderly age group, but it has a direct impact on the overall family lifestyle for all of those connected to a loved one diagnosed with the disease. It quickly becomes the family’s responsibility, specifically the spouse’s task, to care for the affected senior and a new set of challenges are presented almost daily as the family members learn their roles.

During an early stage of Alzheimer’s, the senior will typically need reminders to complete routine activities like eating regular meals, taking medication, managing hygiene tasks, and remembering names. As this stage progresses, the senior may struggle with incontinence as well as facial recognition. More severe stages of the disease may eventually require total care for all of their needs.  

So what happens when a senior facing Alzheimer’s Disease experiences the loss of their spouse? With such a complicated and variant diagnosis, there is no specific instruction for how every situation should be managed. But there are a few tips that will ease the process for those left to care for their loved one in the spouse’s place.

Firstly, someone will need to share the news of the passing of the spouse with the senior. The news should be offered gracefully, and presented in a manageable format that lends itself to the stage of the seniors Alzheimer’s diagnosis. The family member or caregiver responsible with this undertaking should know which triggers to avoid, and should also consider having another family member with them in the case of an unexpected, negative reaction. Grief already yields so much pain, and to a senior battling illness the news will more than likely be overwhelming. 

Emotional symptoms are at the forefront of the issue, as grief is already known for bringing a variety of emotions to the surface. But Alzheimer’s brings a few specific emotions that could be heightened during the mourning and adjustment period. Anxiety and stress are common emotions that could easily come from the confusion of missing their spouse or not recognizing a new caregiver. As for the caregiver, patience is key and they will need to find a way to share the daily responsibilities with other family members in order to relieve their own stresses and anxieties. Whether family member or hired caregiver, this person will be challenged with physical and mental oppositions.

Emotions can also quickly escalate to physical and behavioral reactions, especially where Alzheimer’s is concerned. Even without the added grief, physical aggression is common with Alzheimer’s patients. On any given day, the senior may be physically uncomfortable, experience medicinal side effects, or become overstimulated by their environments. A few tips for a caregiver to ease a rising outburst, include: conceding to an unnecessary argument, changing the topic, and speaking quietly instead of raising your voice. In emergency situations, calling for help may be necessary.

There is no doubt that the issue of Alzheimer’s and losing a spouse are two of the toughest battles a family can face. When both of these are combined, the road is even harder to walk. And yet, as the family of their beloved senior works out the difficulties associated with Alzheimer’s, they inadvertently provide an atmosphere of support that the senior really needs during their time of grief. As Alzheimer’s Disease affects your beloved senior during their time of loss, be the help they need most.

Author: Michael Longsdon (

How did we become professional caregivers?

How did we become professional caregivers?

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.

Billy Jean

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.