This is such a touchy subject. Death comes in different ways. I know that it can be horribly difficult to watch your loved one suffer near the end. I think there comes a resolve or acceptance when you witness the active dying phase and realize the process of death has begun. There is not a shred of hope left for many at that point. The waiting is unbearable. Even with end of life medications, a peaceful death may elude us. I pray we all have the strength to handle such emotional times. And I pray that surviving caregivers will recover from this type of trauma, because for many, it is a terrible trauma.

you are all talking about elderly people I have lived with a man form many years who is now 71 He has an anesthesia error under a simple colonoscopy and now he is in bad shape No doctor will say it is from that or give him a diagnosis I care for him and he is stubborn and demanding. I want to move to a nicer house because travel is out of the picture and he blocks it. He has gotten worse and his speech is pretty bad We havew an aide sometimes and he does not really want to pay for it. He would like me to pay for everything and take car of him
I get to go to the gym and whenever he starts improving he does something to mess that up. He is tough. I maintain a spiritual attitude but sometimes I just need to get away for awhile. He would prefer I dont and sometimes I have an outburst when the pressure builds up With covid there are no shows and travel is up in the air. He wants to move to California except I would have to do all the work and find the place I feel like I am his servant. So what do you think I took care of my 93 and 97 year olds parents and they were angels compared to this So cooperative and unselfish

I did try to “hurry up the process” because my Mum kept telling me it was torture. While everyone was out of the room I asked my husband (nurse) how to do it, which button to turn off, but he wouldn’t tell me and then someone came in. I would have done it. And I want someone to do the same for me.

Perhaps Covid-19 and all its virus relatives are a god sent for elderly in Facilities. Nature's way. Keeping very needy elderly people alive is not the way Nature operates in the animal world and we are animal, too. My Mother was in a facility. She passed less than a month ago. I think we were both relieved. I have so many similar thoughts to all the comments below. But I am at peace with her passing and I believe she is, too. Only complaint now is that no one including me could be at her funeral and I can't even get to the Cemetery. Perhaps its best she passed before having the anxiety about the Virus. My Dad died just before 911. He worked near the World Trade Towers. He loved NY. I was grateful he did not witness what happened.

My mom's Alzheimer's was so severe she had to have a feeding tube and even required help with bowels. She forgot how to bear down. Mom was extraordinarily difficult to care for and her feeding tube required a lot of work to keep it clean, patent, and free of infection. I never had a problem with it.

But not once have I ever wished my mom dead. I dreaded it. and when it happened it nearly destroyed me. Mom died 6 months ago and I'm still trying to recover from her loss. She truly never suffered, and died very peacefully. Regardless, I suffer everyday knowing she is forever gone.

Rose, I totally relate to what you said below. But, based on my recent experience of my mother's last few weeks of life, I would ask you to stay open to the idea that your father may need the medications and full-time nurses before the end, even if he doesn't need them now. My mother also had a week or so of peaceful sleeping (following a UTI that developed into sepsis), but towards the last few days she did develop pain (maybe from her disease, maybe from laying in bed for so long, maybe from her organs starting to shut down), and she also started having a lot of trouble with chest congestion and breathing. We needed the pain medications and we should have brought in the full-time nurses too, but we waited too long, thinking her passing would be a lot more peaceful than it was. Just don't be caught off guard if things start to become a lot more difficult and if you do need to bring in more help from hospice. I don't want anyone else to have the regrets that I have over not doing everything possible to help my mother pass as peacefully and painlessly as possible.

The only reason I have time to post on this forum is that my father, who has severe aortic stenosis, inoperable parotid malignancy and vascular dementia, stopped eating over a week ago after a mild fall and possible TIAs and began sleeping almost continually. He wakes to drink a little, says he feels good but just can't stay awake, and pleasantly goes right back to sleep. PEACE!!! His dr ordered hospice, but he doesn't need the medications or a constant nurse. He says "don't send me to a hospital for any reason" so I agree and see no reason to tell him he's on hospice, the nurse and social worker who said I MUST tell him have been fired from our case, we have a new nurse coming. He still thinks he has a girlfriend half his age and dreams about her. No way I'm breaking that delusion to tell him he's dying. He is at peace, in his own home and our nightmare 4 years is almost at an end. I am already feeling relief!!!!

I pray to God everyday that he takes her. This is no way for anyone to live. Mind gone, confused, don’t know where she is or who is with her, she’s sad, accusatory, paranoid, happy, incontinent, eats then doesn’t eat, keeps trying to get out of bed and then bites me when I try to stop her softly and gently, she’s in turmoil and mentally no longer my mother. There is no feelings towards her as she is just a patient for whom I must care for in the most undignified ways. Such suffering and pain and the torment just goes on and on. Day after day no joy, no life. I’m a prisoner to my role and everyone says “take time for yourself”. How in the heck are you supposed to do that exactly? Pay more money for someone to come sit with her? More of my own savings dwindling away cent by cent? No time? No privacy, no happiness for her or me. This is not caregiving. It’s s horror movie as your own parent the boogeyman that waits until you are finally feeling better and boom the monster wants to come back out again. There is no end in sight, no relief for her. The constant futility of it all
Yes I pray every single day. Every single second that there is a merciful God and he grants me relief before I’m in my own grave.

Same feelings here. I often wish that my mother had switched places with her sister who died early this year from cancer. Her sister’s death, as endings go, was not a bad one. After being diagnosed with terminal cancer she went quickly from her home to hospital to hospice then returned to her home when the end neared. Everyone came to to say their goodbyes and she was gone the next day. My mother on the other hand is on the path of a snails paced decline. Why does she continue breathing when she gave up on living Years ago. I don’t even know if I’ll have any feelings left for her when her death finally comes. Just a numb hole were she used to be.

I found great relief in reading the article and subsequent comments. I have wished for some time that my mother would pass quietly in her sleep. She is 82 and has been residing in a nursing home for the past two years. I have been her caregiver since 2007...she lived with my husband and me for four years until she transferred to ALF and then the NH. My mother has been disabled since the age of 54 following a brain aneurysm. She is currently bedridden and has dementia. It takes two CNAs to provide total care. She also needs a Hoyer lift to transfer from bed to a reclining wheelchair. She has progressively declined and some days does not get out of bed. She can feed herself with utensils, but mostly uses her hands. I am her POA and pay her bills. She has spent all of her money on care and has been on Medical Assistance for the past year. Her quality of life is minimal, and I have been praying for her to pass to end her suffering. Today was one of those days. While I was visiting, she needed to be changed. I stepped out of her room and waited while the CNAs did their work. From out in the hallway, I heard my mother screaming and crying in agony. I stepped into her room to check on her, and the CNAs said, "she does this every time she is changed." I had no idea this is how my mom reacted when she was changed. I plan on having a discussion with the social work director tomorrow. I stayed in my mother's room and tried to calm her. I explained to her in a soft voice that she needed to calm down; the nice nurses were trying to help her; and she needed to be cleaned. She immediately calmed down with distraction, but it was shortlived. She resumed her crying and yelling until the nurses were finished cleaning her up. I remember that she acted this way during an Emergency Room visit when they tried to catheterize her for a urine specimen. I believe that my mother feels embarrassed and humiliated that she needs incontinent care, but I also believe her behavior may be related to trauma. She was married over 50 years to a man who abused her. My mother has no quality of life, and to prolong her suffering seems abusive to me. As her POA, do I have authority to discontinue all of her medications and request palliative or Hospice care? I have always held a strong belief in the sanctity of human life, but my experiences with my mother is challenging this belief. I have a full time job and a husband who is retired and needs my attention, too. I will be at full retirement age in four years. We would like to move south, but we cannot leave until after my mother passes away. There are no other family members who can care for her. So, I have let go of any guilt feelings that I have had in the past. My husband is supportive, and I appreciate the support I receive from this caregiving website.

Vancouver5 - I have to applaud you for stating so unequivocally a point of view that others may see as extreme if not completely unacceptable. I for one agree with a lot of what you've said.

I'm of two minds about the "duty to die" idea, because circumstances are so individual. There are elderly people, like my maternal grandparents, who remain capable of managing on their own right up to their deaths. There are young people who, due to illness or disability, consume huge amounts of healthcare dollars all their lives, like my sister who died at 67 from complications of a cancer she had in infancy. There already is a certain amount of rationing of health care services, as in the case of my brother in law (different sister) who contracted pulmonary fibrosis and who, despite excellent health insurance, was denied a lung transplant due to other health issues (CGF and diabetes) and died at age 58. I expect healthcare rationing of that type to increase as dollars get tighter.

Doctors are trained and paid to keep people alive, and they're very motivated to do that. What's wrong is the expectation, which seems to be growing every day, that families will pick up where the medical profession leaves off and manage the debilitated person's daily needs with no thought for their own lives and own needs, for however long the need exists. I so agree with your statement "Time is our most precious resource; to squander it in the daily mind-numbing, monotonous, repetitive enterprise of "caring" is a violation of nature and contrary to life itself." Yet I think there has to be an exception, for those cases where the love is so strong that there is meaning and purpose in caring for that individual to the last breath. Too many of us are roped into this role by the needs of parents and the expectations of society and the medical industry. We're forced because there is no other option. That is wrong. It's not just the elderly, in my opinion.
No one of any age should feel entitled to consume anyone else's resource to an extent greater than would be voluntarily given out of compassion and love.

Flowersdie - Most of us don't have to ask what our elderly parents would like or want. Most of us are bombarded non-stop with our care recipient's wishes, needs, and expectations. And yes it is stressful, whether you choose to acknowledge it or not.

It's rarely the case that a parent gets moved against their wishes, at least if they're still capable of managing their own affairs. Most would simply refuse to move. I think there's probably more to your story than you're disclosing here because you seem like the kind of person who is perfectly capable of just saying no.

Thank you so much for this. I do not believe my mom would ever want this to be the situation and she would tell us to go do something fun. I miss her so much every time I visit.

BS ALL we ever hear is the poor careiver. I was a caregiver for my husband who passed 8 months ago. I\He was never a problem. Have you ever thought about asking the person being cared for their opinion, how that person feels, what would that person want or like. NO All you can do is complain because youre a stressed caregivers. HOWEVER , my situation has been reversed, i AM NOW LIVING WITH MY SON AND DAUGHTER IN LAW, BECAUSE MY DEAR CHILDREN FELT i SHOULD NOT LIVE ALONE. i WAS MOVED OUT OF MY HOUSE, WITHOUT ASKING WHAT i WANTED TO DO, Well now I live in isolation with one child and an inlaw child, both adults in their 50's, my life is sullen, a lot of alone time, No day time conversation, I get my breakfast, and lunch. Dinner is prepared by the daughter in law for herself, my son and myself. Maybe you shoul d think about the person being cared for, it is not easy for them either. Their life is turned upside down with no way to go anywhere on their own.

I too have had any and all thoughts cross my mind wanting a final end to all the suffering. So far 8 years of being with a spouse that I know will never recover from a mental breakdown. The "medical" treatment from mainstream medicine is abysmal. There is better care, but at a steep price. Caregivers, take the advice here. Take care of your own needs. It will do you,, as well as the one(s) you care for, no good to be isolated. I'm going to find a support group.

We caregivers are a passive, obedient group of sheep. We lie down and get walked on. It's time to say ENOUGH. I am NOT doing this anymore. If you want to keep this shell of a human being alive, it's on YOU. As a society we have a moral obligation to confront this. We are all going to die; so why are we hell bent on keeping frail elderly citizens, particularly when dementia involved, alive at all costs? Health systems all across Europe and North America are crumbling under the staggering costs of medical care for the very old; it is not longer a crisis, it's a full scale emergency. The elderly are devouring up to 70% of all health care dollars. In an economy where young people can barely afford rent, how is this upside-down triangle to continue? Now add to this the wasted lives of family members thrust into involuntary care giving. Because it IS wasted. Time is our most precious resource; to squander it in the daily mind-numbing, monotonous, repetitive enterprise of "caring" is a violation of nature and contrary to life itself. Old people have a DUTY to die; past a certain age all life extending medications need to be seriously examined. The pointlessness of my father's existence is an affront; he is restrained, sedated, pumped with anti-psychotics. And why? Because the system cannot deal with the ravages of this progressive disease; all they can do is "manage" him. There is never a discussion about ending his suffering - that would be considered "inhumane." No. What we have done to him is inhumane. Families are required to step in but we are not allowed any real control. Adult kids' lives are hijacked; you can't travel, you can't make plans. Your entire life is narrowed to a fine point of relentless preoccupation with another person's hallucinations. Doctor assisted suicide should be par for the course; thin the herd. My father is going to die anyway, like all of us. Why, why, why are we dragging this on to its ghastly bitter end? And at what cost to me, to society, to our economy? It is madness. I am now bringing this up with every social worker, nurse, doctor, etc that I encounter. In most cases they nod their heads...if enough of us stand up for a dignified death things will change. Speak up!!!

Hello all, I stumbled across this web site by accident but I do find it very interesting listening to other people's views, and do try to help whenever I can. Luckily I have knowledge of many resources, in Texas at least because I have a number of physical and mental challenges myself and often need help. My goal of writing on here is to pass on that knowledge to others who need it.

I am now 70 years old (how did I come to reach that age?) and have no family living in this State or even in this Country. No husband or children, obviously no grand children. I just have one brother alive who is now 87 and living in Australia - 10,000 miles away. He keeps saying he wishes I could live there but uprooting after 25 years here seems like a very bad idea to me. Anyway, I am so glad to read this great article because I have had so much guilt in the opposite direction. I lost my dad when I was 10 and my mum when I was 15. So I have been unconsciously looking for a mother figure all my life without success. My mothers-in-law weren't what I needed at all. Upon reading this article and all your comments I somehow feel lucky that I don't have this awful problem of caring continuously for older relatives. This brings me a lot of guilt too. However, it does bring home the inevitability that I shall sooner or later be one of those who does need a caregiver and am totally horrified by the thought. I don't have enough income for private care but I have too much for Medicaid. Quite a predicament. However, I have found out that an agency here is attached to my local hospital and they provide in-home specialized nursing care 24/7 100% covered by Medicare. I think that would leave a lot of time for a caregiver and maybe take away some of the guilt and other problems that go along with long-term care. Does some agency in your area provide this kind of care? It may be worth a few phone calls.

I felt the same way about my late parents. I figured it was normal, but had some guilts.

this article was so helpful to me. I have had all these feelings and accompanying guilt. It is good to know I am not alone. I am absolutely going to look for a support group for caregivers.

I admit to having these same feelings for my husband sometimes. Some days, he is the wonderful, caring man I have loved for so long. Other days, he is mean and says horrible things to me (which, of course, he does not remember saying.) The only way I can get through to him these days, is to cry. When I cry, it is as if something clicks in and he tries to be better. He is in the mid stages now. He is 71. I am 60. The sad thing is, is that he almost died in October--his heart stopped, and required a pacemaker. Now, the pacemaker has been pacing his heart more and more. If he did not have the pacemaker put in, his heart would just be failing and he could just die with dignity. I took care of my Daddy for 5 years before he passed from complications of Alzheimer's. I know what I am in for, and that makes me so sad. I know I am clinically depressed and have met with a counselor. My life revolves around keeping my husband engaged. I have no family members close, so I am doing this alone. I can say, however, that my friends here have stepped up as they can. I sing with a women's chorus and on rehearsal nights, one or more husbands come and sit with my husband, just to watch a movie with him. I am blessed in that regard. But sometimes, I do feel alone, I wish he could just pass away peacefully, and I could get a bit of my life back.

Thank you for writing such a thoughtful and hopeful article, full of compassion!

I appreciate this article and the comments. My husband has been hospitalized in one facility or another for almost 5 months. I know even when he gets better physically, he may never come back mentally. He’s 62! It’s never going to be the same no matter what. It’s very difficult to see him every day knowing this day is probably better than tomorrow will be.

One thing I have learned through all of this is that you MUST take care of yourself too. If you don't you will go down. Sometimes the stress is outlandish and unbearable. That is when you have to stop, take a few days if you can and take care of yourself. I light an oil warmer of Lavender, turn on my zen water fountain, hot shower, foot and hand rub. You must also have a "lie around day" where you do absolutely nothing but YOU. I do this and other things to reduce my stress. Even though my mom is in memory care it can still be stressful with worry and concern that she is being properly cared for. Who knows what goes on when I am not there. So, after visits with mom I take a few days to recover and do ME. It is devastating to helplessly watch this happening to her. Alzheimer's is a terrible and horrible monster. Leaning on God and prayer makes it all easier to bear, trusting that he is looking out for her. I'm thankful that she is not in any pain. On visits I perk her up, take her outside into the sunshine, we call family members and her friends up north where we are originally from. I love it when she doubles over laughing. We have great visits. But when I get home I relax and do ME.

Good article ;it's a strange thing to do the role reversial ,when we as adult children have to care for our parents or Aunts & uncles ,grandparents ect...the responsibility of haveing to take care of grown adults that can no longer take care of themselves people who have had full lives ,houses ,cars ,finacial capability and responsibilities jobs ect....now they can't do anything alone it's a sad situation and it's also a mourning process for our elderly loved ones to realize they have to depend on us ...the kids they raised....to take care of them ....we all know how sad our elders get and cranky .WE do not mean to have negative feelings ,and honest we do not want anything but comfort for our elders ,we all know they can't help it ,just as it is probly the hardest job on the planet to be a full time caregiver so give yourselves a break .take a day to yourselves ,and breath you will other have any regrets that's for sure!! Just keep on keeping on and good luck!!!

Thank you for this article. It’s like you’re reading my mind.

my mom is very unhappy she seems lonely although never alone.. her quality of life sucks to put it plainly. I wouldn't want my life pulled out from underneath me ..my dad has died and she can't remember anything anymore I'd want to die and be at peace so I wish this for my mother everyday, I do pray that God will take her home... as far as I'm concerned she's done living. I used to feel guilty about feeling this way but I don't anymore

Caregivers, don't feel guilt if you wish your "loved ones" were gone. First of all, this is perfectly normal. All of a sudden all the problems of the world are dumped on YOU and your life changes drastically as a result.
It is very sad to lose loved ones, especially if they treated you well and with love and kindness. That is quite normal. However, if they were mean, cold, abusive, etc. to you, again it is normal. They obviously do not deserve the extra care you are giving, your life is no longer your own,
and the list goes on. Either way, if they are ill, suffering, or otherwise at a point in their lives where there is absolutely no good "tomorrow", then it is quite acceptable. They have lived their lives. Now live YOURS. Do not feel guilty - you are just being human.

I had these feeling regarding my mom. Not as a caregiver, as I wasn't, but when she kept falling and ended up in the nursing home with cognitive decline, and seemed cold to my dad, and just wanted to go home. They took good care of her, but she had to wheelchair-bound because of her falling. I wouldn't wish that on anyone. Her heart stopped after 2 months (in spite of several meds). I never mourned for her; she'd had a good long life and deserved to go peacefully in her sleep.

I'm not alone..certainly makes me feel better as a human being! Thank you!

I am dealing with this right now. My 89 year old mother has spent the past 5 weeks in a private hospital; an initial partial foot amputation to remove rotting and dead extremity failed and she continues to decline with necrosis. She had pneumonia after the surgery and survived that; now she has had a left lung collapse and still, with no antibiotics etc continues to the point the staff are thinking to release her home! All through this, she has NO MEDICAL INSURANCE, I have been left to cover the costs, now in excess of USD100,000. My mother refused treatment when she was in good health to prevent almost all these problems that now afflict her - she cashed in her only health/life policy to fund her indulgent lifestyle and has caused me nothing but emotional and fiscal burden for almost 20 years. Her doctors told me she would pass within a few days of the lung collapse - she is still here and when I look into her eyes, I do not see love, I see a despicable old woman that I want to die, then I am free of her... there is nothing wrong with wishing ungrateful old parents death!