Caregivers get real about what it’s like
frustrated caregiver at the end of her rope

We talk a lot about how rewarding and meaningful caregiving can be. Most of us would never trade our responsibilities, but that doesn’t mean caregiving isn’t the most difficult thing we’ve ever done.

Instead of trying to sugarcoat it, how about offering caregivers some real support?

I cared for my mom for 10.5 years after her stroke. She moved in with me when I was 29 and moved to an assisted living when I was 40. Now she is about to transition to a Nursing Home. So scary, because as many of you know, out country SUCKS at taking care of its citizens, but especially the elderly.

What many didn’t realize is that, although she hasn’t lived with me for two years, I still have to deal with the pads, the briefs, the meetings, the unanswered call lights, the endless phone calls (sometimes 50+ a day) because she is lonely.

It’s exhausting. It’s guilt ridden. It’s unforgiving. – Greta M.

You are so right, some days you feel like you cant even BREATHE! My dear mother in law has had Alzheimer’s over 17years already! My mother has had dementia over 3 years and we take care of her at home 24/7! The stress level among the siblings is through the roof! God Bless all caretakers its the hardest job in the world and unless you have lived it you have no clue. – Tammy B.

Everyone thought I would get a break when my Granny had to be admitted into the nursing home when she broke her shoulder. They called me numerous times daily and would ask when I would be there to sit with her because with her Alzheimer’s she was a handful for them. It was just as exhausting and I hated that she was there. – Chris M.

Caregiving has been my life for 4 years now…it is the worst. I lost my retirement, I’m losing my home, and frankly people are sick of hearing of my son and his illnesses. The worst question of all “when will he get better?” again, no, he won’t ever get better. – Paula P.

My husband has been battling head, neck, and lung cancer for 5 years. He gets his health care through the VA because his cancer was caused by Agent Orange. While we have no financial issues, the stress gets overwhelming just the same. His 3 kids have never offered to go to a doctors appointment with him, or stay with him to give me a break. Sometimes I just want to yell at someone. – Brenda I.

It’s all about attitude. You can either sit around woo-is-me-ing or you can find joy in little things and not be as miserable. I’ve been caring for my father with dementia for 7 years now. I’m 36, not married, living with my parents to do this, have no clue how I’ll survive or even work after all is said is done and children are now out of the question. Sometimes I succumb to the misery and have a good cry. But the next day, I list what I’m thankful for, even if it’s just coffee, my cats, or the weather; try to put everything back into God’s hands; and smile when dad says “good morning” or “I love you” back to me or my mom. – Susan F.

It’s all about how you spin the situation. I’ve been taking care of my husband for 1.5 years as we battle throat cancer. I’m no iron maiden, or super woman. I spend my days exhausted and often in tears. Caregiving does suck, but you’d best suck it up and get a handle your misplaced frustration. – Fiona S.

I took care of my mother for 20 years until she passed. While I was able to work, that was my only outside activity. It messed up my young adulthood and my adult life. I had no vacations during that time. My sibling hardly ever stepped up and helped out cause he lived a couple of hours from me. Like many caregivers I have diabetes and heart disease. It takes a large toll over time. Would I do it again…No, not in the manner I did it. I now have no children to help me out in my old age. I now advice people, take care of yourself FIRST. Seek balance and don’t make that sever of sacrifices! – Karen T.

I’ve been caring for both of my parents for over 21+ yrs. I’m tired of this. When My Dad Asked Me 21 YEARS ago to stop working to take care of them, I never thought it would be this hard. My mom is stage 3 Alzheimers and can’t walk due to her stroke and my father had leukemia.

I hate it when people ask if I need help to just give them a call only to come up with an excuse.

I even become angry when these so called caregiver experts giving advice when they themselves aren’t experience caregivers. Many of these so called experts always have the same excuse when I challenge their credentials as to call this number or person about their caregiver experience. Yet I’m grateful to the very few who contacted me saying that they have experience in taking care of a family member. – Bob H.

It’s not an easy road to travel. There are organizations that raise money for research, but none for caregiver assistance. There are many that offer help, but it comes with a hefty price tag. After several years of suffering from ALZ, my sweet Mother left this earth on Aug. 12. I was her caregiver during these years. I watched my Mom totally disappear and at the end, her family was with her as she drew her last breath. – Pamela M.

I’m my moms caregiver and its draining, my life isn’t what I had expected… but to not have her here with me and our family that would be more devastating. – Harper R.

Talking about how hard caregiving can be is not meant to make you feel bad. It’s just a hard place for caregivers. It doesn’t change that we love the people we support and want to be sure they’re ok! – Karen B.

It’s so hard because you feel guilt for wanting time alone but I’ve been doing this caregiving now for almost a year by myself after my father was killed, my mom had a stroke and is in a wheel chair and has no left leg control…she’s a total dependent. I am an only child, 35 and I am already burnt out.I have some help in the mornings so I can work, but all nights and weekends are on me and I am exhausted! – Lisa R.

Caregiving IS rewarding. And it can suck. At the same time. I’ve been caregiving to a family member for 18 years and helping a team of carers do the same and it can be inspiring and uplifting. The ingenuity and love and generosity of spirit of other caregivers inspires you. And the strength of spirit of the person being cared for, if you are lucky enough for that to be intact. But, yes, it is exhausting and at times you’re on your knees thinking “What can we do next that might be of use as so far I’ve done everything and I don’t think I’m helping.” All you can do is be there or make sure others are when you can’t be who are loving and generous of heart and… that’s about it, I guess. – Phil D.

It sucks. It’s draining. It’s tiring. It’s hard. It’s painful. It’s lonely. It takes someone special to do it. It’s what we do. We never stop. – Jeannine G.

It really does suck. It sucks your energy and your attitude. Some days, it sucks your sense of humor right out of you. But we keep on, caring for that loved one as best we can, given the rotten circumstances. – Gretchen M.

We have long term health care insurance that we can access for assistance, but here’s the thing. How to convince my sick husband we need a stranger in the house to help us out? Exactly when will he think it’s “time” to call them in? I work full time and teach at a law school one class a week. And get the house cleaned, dogs fed and groomed, lawn mowed and other landscaping done, etc. yet if I want any time to myself – a conference out of town – even a late dinner with a girlfriend – I get the passive aggressive guilt treatment. I have cancelled out of and left early from more obligations I’d like to think about. He refuses to see an end of life therapist and some of his family is somewhere on a barge on the River Denial. His illness is terminal, there is no more treatment available and things are just going to get worse. So I’m not feeling the “rewarding” part at all and I don’t think your attitude needs any sort of adjustment. Keep enough of you going so you can live and enjoy life after they are gone. – Melissa M.

This damn job is no fun, but yes, there are some funny moments. It’s also heartbreaking, nerve racking, anxiety filled, scary, worrisome, difficult…I could go on all night. No, it’s not rewarding, but my parents deserve the best I can give them and so much more. – Frank A.

Its a miserable existence! Pee and crap everywhere, wandering, literally being beat up, scratched and bit, just for trying to clean her up! My MIL hallucinates and talks crazy all the time. Disassembles every object in the house, and cannot be left alone for 5 minutes! – Vickie B.

I didn’t think it was gonna be this overwhelming and such a big life changer, but I’ll do anything for my 90 yr old Grandma. My reward is God letting me spend our days together. – Adriana E.

You lose your loved one, you lose yourself, you lose your family and friends. And you are unable to help your children and grandchildren. – Elsebeth P.

Some comments have been edited for clarity or grammar.

Written by Michelle Daly

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64 Comments

  1. I’ve been a nurse for 40 years and had my mother with dementia in my home as a single woman for 8 years. I resent my 10 sibling who do nothing to help. She can only walk with assistance as I steer and push her with the walker. I cannot leave her alone. I feed her, assist with defecation, dress her. She is total care. But if you’d look at her she looks 70 instead of 87. She’s had dementia for at least 17 years. I want out of this so bad I could scream. I’ve thought the only way out during a pandemic is suicide but I’ll be damned if my siblings get MY inheritance. Support groups are worthless. The social worker does nothing but quote statistics like 30% of caregivers die before the recipient!!! Thanks a lot. I swear I will have ‘selfish’ tattooed on my forehead when she dies and will NEVER take care of someone again in my life. Btw,,, dont EVER be a nurse,,, everyone thinks you should sacrifice your life to take care of everyone always and forever. Take a hike,,, I am NOT mother teresa. And will likely go to hell anyway as angry as I am.

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  2. I’ve cared for three generations of family members. My mother had vascular dementia and I was her family caregiver for nine years. In 2007 my elder daughter, mother of my twin grandchildren, died from the injuries she received in a car crash. Six months later the twins’ father died. The court appointed my husband and me as the twins’ guardians/caregivers and we did this for seven years. In 2013 my husband’s aorta dissected and he had three emergency operations. During the third one he suffered a spinal cord injury that made him paraplegic. I became his caregiver the night I took him to the hospital. This is my 22nd year in the caregiving trenches and I am weary. Worse, I’m short on energy. On May 5, 2019 I had open heart surgery and a pig valve was installed in my heart. Unfortunately, I still have times when my heart races and I’m short of breath. Writing is my salvation (I’m a health/wellness author) and I wrote a series of four books for family caregivers. Also wrote a book about raising grandkids and grandmothering. Writing books to help others also helps me and I am grateful.

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  3. I happened across this web site because I was feeling sorry for myself and went searching.
    I have been care giver for 101 yo mother and 67 yo sister with C P for 5 years.
    My heart bleeds for so many on this space and I can only imagine what you are going through. After reading the stories, I realize how much I DO have and how lucky I am. If it’s any consolation – remember “this day too shall end”. Try to see the glass 1/2 full.
    I live in the Caribbean where medical conditions are not so good.

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  4. I totally understand

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  5. I totally understand

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  6. When your own life takes a big back seat while you’re busy with everything else, especially when you are Caretaking 27/7, I know I personally have been judged on that alone. My downfalls personally. I don’t feel like I am looked at as a solo person/human but as a machine that doesn’t do all I should or they think I should on a personal level. When no one that has really lived it solo knows how hard it is to progress in your live all the way around even with your home and any relationship when your loved one needs you around the clock everyday. God forbid any major problem(s) hits your own life that you have to deal with on top of it. No one is there for you and no one is there for the loved one needing Caretaking family wise. Many times friend wise either.
    Doctors and nurses need a big education on the caretaker role, too and the people that do it.

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  7. When your own life takes a big back seat while you’re busy with everything else, especially when you are Caretaking 27/7, I know I personally have been judged on that alone. My downfalls personally. I don’t feel like I am looked at as a solo person/human but as a machine that doesn’t do all I should or they think I should on a personal level. When no one that has really lived it solo knows how hard it is to progress in your live all the way around even with your home and any relationship when your loved one needs you around the clock everyday. God forbid any major problem(s) hits your own life that you have to deal with on top of it. No one is there for you and no one is there for the loved one needing Caretaking family wise. Many times friend wise either.
    Doctors and nurses need a big education on the caretaker role, too and the people that do it.

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  8. No one knows until they go through it!

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  9. No one knows until they go through it!

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  10. Ooo nursey wanna cookie. CEO makes $2m.

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  11. and then most people never acknowledge it as real work and tell you to get a real job…

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  12. I am my son carer he is now 27 years old when he was younger I felt the same as all the families on here. But as he is older I now get a break as he has bought a house in Brisbane to get some respite and have a life with out us. We agreed to this as we are getting older and if something happened he was set up ready to move and the transient would not be hard on him and he would not have to wonder where he would go. He has great carers down there and after a few weeks he comes home and I find it isn’t as draining as full time care. There is hope out there

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  13. It’s a life that is only rewarding to the one you care for and yourself. Overcome the crap of the outside. It’s a life full of rewards.

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  14. I was just sharing a memory from four years ago. When mom went to water the plants in her depends.

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  15. Can’t even imagine what is must be like for the caregiver.

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  16. It does. Help to hear how other people feel and what they are going through. Sometimes You feel Guilty for just being so tired.

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  17. It is what it is, that’s why its care giving. You give no matter what the price for you. I would do it again. I cared for my other half after he was diagnosed with health issues from 2001 till his passing in 2005. Then took the caring for my parents in 2011 till my dads passing in 2016. Now care for my mom. My calling after is to be there for other family members who need breaks. I know how much breaks are needed and will be happy to oblige others in the family.

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    • You are a sweet angel Cynthia Schwertner

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    • Janet Hankamer thank you, this space is great for help. Good to see you here too.

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  18. It totally sucks the life out of you! I am bitter, burnt out and pissed off at my siblings for being able to have a life of their own. And sadly I am losing compassion. I live my parents dearly, but my health has taken a nose dive and this job is definitely not rewarding.

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    • People always say it is rewarding. I am having trouble seeing that through the burnout.

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  19. It is not for the weak in spirit or body or any other part of oneself!

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  20. Ive done it for 10 yrs, 365 247, my husband has short term memory loss from a cardiac arrest

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    • 4 yrs, so far. The bullet has my name on it;/

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    • I recently found out i have depression and anxiety

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  21. I was a caregiver for my mom in my home for nine months. Now a caregiver for my husband for the last couple of years. Hard. I hope I never have to do this again.

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    • I have too​, the only thing left is my sanity and that’s draining fast!!!

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    • That was the first to go, for me…

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  22. The seniors today are downright rude n demanding, that’s why I quit. For the agencies, its all about the money.

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    • I don’t know…If I saw my independence slowly slipping away every day, plus my mind, my body, my property, my finances, possibly my family that doesn’t visit or care for me, my pets…basically everything that I worked for and cared about…and if I was, say, incontinent and on a ton of medication that might cause certain behaviors due to side effects, I might be scared shitless, super lonely, and very resistant – and I might be rude or demanding too. I care for both of my parents – ages 93 and 85 – alone, in their home, which is not Downton Abbey, nor am I a duchess. I hear you on the agencies.

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    • I totally understand!! My Mom died from Alzheimer’s complications three years ago, and now my Dad is going downhill Fast. He has three different caregivers that come into his house, one or another nearly every day. He refuses to be placed in a home and he is of sound mind (pretty much), so there is nothing I can do but visit every few months and watch his terrible decline. I dated a guy who owns a local Comfort Keepers franchise (unlicensed helpers/caregivers), and the pay the workers receive is horrific. Barely minimum wage…while his company makes 35-40$ per hour from the client, the workers only get 12.50 per hour out of this. He says it’s to cover overhead, insurance, etc…but it still seems like a raw deal for the workers. My Dad is becoming increasingly grumpy, negative, demanding, and rude in general; I have noticed a marked difference from one visit to the next. He just sits back and orders people around and barely gives a Thank You or any appreciation. Thank God I’m not living with him and he can afford to pay two of the workers out of pocket per hour; the third worker is from the VA and is free for him. My best hope for him is to pass peacefully in his sleep, and not as the result of another drunken fall. His caretakers tried to hide his booze, but it backfired and he only got angry and got in his car and drove to the liquor store and got more. He totalled his car a few months ago, driving with a broken wrist and jacked up knee, and then went out and bought another car. Great!!! He’s extremely hard of hearing, refuses hearing aides, so communication is exhausting…I have to repeat myself 2-3 times while straining my vocal cords. Again, thanks for listening to my story and I do not blame you one bit for stepping away from your profession. It’s one of the hardest jobs in the world with the lowest pay you could imagine!!

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  23. I work as a caregiver, to help families. For me it is a very rewarding job. I think it is harder on families because they see their loved one hurting and feel helpless and not sure how to handle certain situations. I have done live in work, I love that because you get to spend more time with the person you are caring for. And it is easier on them too. They come to trust and enjoy having someone there for them. Which makes life better for everyone. I still do this work. At the end of the day I feel awesome knowing I made someone’s day much better. Love and light to all.

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  24. It is the hardest thing for sure. All I can say is get the help any way you can. Pray a lot. I have so many regrets because of the burn out!!!!

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  25. I am 51 have a 15 yo son who functions at 12 months old, husband with Crohns who is unresponsive to meds (his kids are AWOL and have been for years), 79 yo mother with dementia who lives with us as well. Two siblings who stop in to say “hi” about every 3 months who have no kids and much bigger houses and closed wallets. I don’t even remember who I am anymore! My days start at 3am and go on and on! Hearing “you need to take care of yourself” makes me laugh!

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    • I feel for you. There are caregivers to hire so you can have a ME day

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    • My son is on Consumer Directed Waiver so I have 4 hours a day I am allowed for an aide for him but in that time I am trying to take care of the house inside and out. The main issue I have is with my Mom who has a sleep disorder and wants to start her day about 4pm and continue it thru 3-4am. I have to be up at 3am to start my sons meds. She gets angry when we (myself and doctors) tell her that’s not a functioning household schedule especially with my son in the home.

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    • Beth Spencer Cliborne I can relate, I am 46, caregiver to my 24 year old son with muscular dystrophy. I also take care of my 95 year old father and 75 year old mother…at times its so over whelming. I have 9 other siblings, several that live out of state and work, they come and do when they can.. others that live here and drive right by almost daily, never stopping to see our parents. Without Jesus, I don’t know what I would do!

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    • Hearing take care of yourself made me cry.

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  26. Very very true. I know. Been there. Done that. Just starting to recover.

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    • How long did it take you to recover? My body is broken after the years of caring.

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      • My Mom died from Alzheimer’s complications about three years ago, and I do feel healed from that entire nightmare experience, and Now…my Dad is declining. He lives two states away and has in the home caregivers, but whenever I visit it’s just depressing to see and experience his decline. I’m hoping for a calm and gentle passing without pain for him; he has incurred many serious injuries from drunken falls and that would be a horrible way for him to go, but he still of sound mind and able to make his own decisions….watching politics all day on TV, then drinking himself into a stupor every night. His choice.

    • Susan Downs 12 years of caring for my Mom with ALS. She lost total use of her body within 3 months of her diagnosis. Her mind was clear and sharp though. Total care. Trach,vent, PEG. 24/7. Lost her Dec 27 so I am 3 months out. Finally eating and sleeping better. Presently correcting my own health imbalances. Weight is stabilizing. Still need to address other issues such as dental and new eyeglasses. Still mostly being chauffeured by my husband as this world changed much over the 12 years that I was cocooned with my Mom. Sibling issues slowly resolving but will never return to pre-caregiver status. I was 50 when she was diagnosed and am 62 now so returning to the work force is no longer an option. Working toward starting to draw my social security. It’s a process. And it’s slow. Restructuring my life. Begin your recovery with a visit to your MD for a complete physical to determine what your new baseline is then go from there. As most caregivers do, we put our health issues on the back burner while attending to theirs. The physical, psychological and emotional demands are beyond measure. Those stressors do much harm to our bodies and our psyche. A year to recover doesn’t seem unreasonable to me. My heart is with you.

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    • I have just finished almost two years of care for my 93 year old controlling narcissistic mother. Nothing was ever good enough or enough, period while she was here. She stated she would never be happy again in her life, she has lost everything, she has nothing. She has me, a good daughter, and a son and grandchildren and great grandchildren. Yet she states that “all my family are gone”. In other words everyone who focused exclusively on her wants and desires has died and now she only has relatives who are trying to live their own lives. She is hearing impaired, but has high quality aids that restore 90% of her hearing. She has macular degeneration, but 20/20 peripheral vision and her Dr says she is blessed to be able to get around independently. She broke her femur three years ago by walking to the mail box on a street that was being repaved despite being warned not to go in the street by neighbors and her children and that we would get her mail for her everyday. To prove a point she went out just minutes after my brother asked her not to, she said she would not then she fell in the street because she misjudged the depth of the street bed since the asphalt was removed. In pain, in recovery for months, only worked at rehab when forced to by rehab facility and since then has been even more entitled about running me ragged for her needs ignoring that I am also a person who she is supposed to care about. She is herself, and now even moreso. Brought her to live me for almost two years. She is capable of all self-care but prefers being served. Moved her out a month ago because my health suffered tremendously in every aspect. Now I am focusing on my life, she has lived hers. I have a right to mine. I will not be consumed by her false neediness, entitlement, victimhood. I choose me.

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  27. Hell! Emotion,physical,CAREER, Social Security points my future retirement low, did not leave house for five years. No visits. Family only called for money. Never changed a diaper however I could better the task after five years ALONE! Home repairs needed from electric wheel chair and Hoyer Lift Lost legs,left arm,bowel,urine,speech,swallow,stomach feeding tube,penis Cath, speech loss, back flash to WW2 , condescending peers
    Threat marriage, …. I am exhausted !

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  28. You are so right Kathy… nobody has a clue what it’s like until they actually living it.

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  29. Until you are a carer 24/7 you have no clue how challenging it is!! It is by far the hardest job i’ve done so far…

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  30. It’s sure hard to do, emotionally, physically, mentally, exhausting to say the least!

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  31. I am in my 13th year as caregiver, and I hate it. Money is not a problem (yet – one more year), but my health is ruined and I may die first (I’m 74). If he had Alzheimer’s, I would definitely put him in a nursing home (Alz patients do not know where they are anyway – My MIL spent 6 years in one. But his mind is fine and a nursing home would be worse than death at this point. I also only have enough to keep him for one year. He has ALS (in a chair 100%), cardiovascular disease (two MIs and numerous arrests), kidney disease (sometimes his BUN goes to 120), diabetes, and now, colon cancer. Yes, I have paid caregivers, but can only spend $2000 per month on the special policy, which will itself be exhausted in two more years. Life sucks, and it is not going to get any better.

    Reply

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