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Moved my parents into assisted living because frankly I couldn’t handle doing it all myself. My dad still has sharp mind but requires a walker to get around. My mom suffered a stroke a year and a half ago and it affected her short term memory. They have been in AL for almost a month and mom asks every night to my dad when are we going home? He tells her this is our home but she still thinks they are in a hotel. She stays in bed most of the time or sleeping in her recliner. If I go over she will get up but my dad or the nurse don’t seem to have any luck. I think she has some dementia as well. I thought this would be the best thing for her because she did this where she lived before also in bed most of the time. Sometimes she says she just wants to die which breaks my heart. This is not my mom anymore. I feel bad for my dad as it’s depressing him. My mom is also diabetic and I thought if they got in to AL it would be better since she has someone to give her meds and insulin but that’s not the case. Her sugars are all over the place! She rarely eats. I’m at a loss on what to do. I don’t want to have to go over every day just to get her up but I feel guilty and bad if I don’t. Any suggestions or advice would be greatly appreciated!

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It is sounding as though Mom may soon need more care than Dad can provide. Firstly, the wanting to die is not unusual, nor do I think it unreasonable. To tell you the truth I am 77 and very well and independent. I do not want to live past when I am. My brother is in assisted living and 85 and wishes he would go to sleep and not wake up. It is what I wish FOR him. There is nothing but loss ahead. Why on earth would anyone be happy about that. The end of life is ALL about loss, and it is often depressing. Please don't put the added burden of some false "happiness" on her as well. She isn't enjoying life. She isn't hungry. She is tired. Why is that not acceptable? It is real, and it often happens. Is it sad? Yes. Is it worth saying "I am so very sorry. Is there anything I can do to make this any easier". And if you cannot, please accept that. Offer things like a nice ride, you and her. But if she is over life then she is. As I said, please accept it. For me if someone tried to deny my honest feelings it would make me feel negated, make me feel burdened even beyond the burden that aging is.
I also am not a fan of guilt. I don't understand people thinking they are Saints, or SHOULD be Saints. We are decent and flawed human beings. Don't worry, the psychopathic personalities out there never feel guilt. That TOO is a normal human feeling when we are inadequate to wave a magic wand and have the world go pretty for us.
Accept what is would be my advice. ACCEPT it, because there is no fighting it and there is no changing it. It is a part of life. Things will not always go well. Learn to see feelings as weather fronts. They come and they go. They last longer periods or shorter periods. They are more or less painful. They move on, and will return. The bow too tensely strung is easily broke. Try to accept and bend a little. It won't always be ideal, or anywhere near.
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Harpcat Aug 2019
Alvadeer I loved your answer as it echos exactly how I feel about life now and the challenges of aging where life has nothing going for it anymore. I never thought I would wish for my dad to have his wish to die, but I do. I think at first people who are caregivers want to keep fighting because they want their former lively parent back. But alas, it will not happen...nothing we do will make it happen.
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Mo, I know that a month feels like an eternity when you had expectations of improvement for them. It took my MIL more than a year to adjust. She has short-term memory loss so didn't remember to eat. She refused to get out of bed in the first facility we placed her (a nice, well-run place). Getting her on anti-depressents didn't help much. Then we moved her to another good facility because it was closer. Magically, after they adjusted her anti-depressents and also maybe because they have more/wiser staff, she now gets out of bed and is totally cheery. We are blown away by the change. I would have bet money that she would had just wasted away in bed.

I'm not saying that you must put your mom/dad onto antidepressents, but in our case they definitely helped. Mostly I'm saying you need to be patient with the mental/emotional adjustment for them. Also, you may need to "purchase" medication management as part of their AL package. This will increase the monthly cost, but it appears to be necessary in your mom's case. Your dad may seem sharp, but no one is able to see the "line" as our LOs slide into cognitive decline. He may have a sharp long term memory, but short term is what goes first and that's what he needs in order to help your mom with her diabetes routine and meds.

Don't for a minute "feel bad" about no being able to "handle it". Caregiving is exhausting on every level, more so when doing it solo. Wishing you peace about your decisions now and in the future.
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Need Help With Mom,
Do also know, while I often do the "tough love tour" I do recognize, with your marvelous care of elders and your love of them no matter the burden, that you are something special out in our world. I worked with elders most of my nursing career. Being their advocate, loving them, is a vocation. I even loved the ones that tried to bop me with their cane as I went by.
I recognize daily the miraculous (tho I am an unbeliever) points of light in our humanity. I am not overall even a "humanist", but this site teaches me what we can rise to. What pain we can endure for those we love.
And it only breaks my heart, just BREAKS my HEART that we do not then recognize the pure human decency in ourselves. That we cannot see that we are never perfect--we are flawed--but we are capable of attempting to do our best, and that's bloody miracle ENOUGH for me. In her last words to me, my Mom, who was such a marvelous woman her entire life, was attempting in a confusion of words to tell me that she knew she wasn't as good as she should have been, but that she was as good as she COULD be. Kind of heartbreaking after such a good life that she struggled to tell me she thought there might have been times she failed me (there weren't). We are ever our own worst judges.
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Alva,

I must say that your response is extremely thought provoking. We often do not realize these things. I myself had difficulty accepting certain things at certain times in life.

For instance, my father that I adored died at age 85. My lovely grandmother also died at 85. I had this belief that my mom was going to die at age 85. I was so anxious shortly before she turned 85 and the entire year that she was 85. I don’t know if it was a subconscious thing at first or what but I can tell you that I made myself miserable. At least I had the sense not to burden my mother with my feelings of being afraid to let go at that time.

I made that mistake with my dear MIL who died in her late 60’s from non Hodgkin’s lymphoma. I could not accept that she was dying.
My MIL knew it and even told her oncologist that she wasn’t worried about anyone else accepting her death but me. She asked her oncologist to speak to me.

Well, she had a wonderful doctor that had terrific bedside manner. Her doctor looked at me in the hospital one day and said, “Let’s go for a walk.” I responded to this tiny woman doctor who had a caring but powerful, strong personality by saying, “Okay, I will walk with you.”

Down the long corridor we went. She said, “You MIL is concerned about you. She feels guilty about dying.” I said, “Oh no, she isn’t dying. She went into remission for five years and she will beat this again. I have faith and praying for a miracle.”

She responded by saying, “Well, I would never criticize your faith. You can pray for a miracle. But as her doctor I am telling you that she is dying and you are being selfish. Go in her room and tell her you are fine with her dying. She deserves that.”

Something about the word, ‘selfish’ hit me like a ton of bricks and I told her that I didn’t want to be selfish. From that day on I accepted that she was indeed dying. My sweet MIL died shortly afterwards.

My MIL had a wonderful oncologist, not just in a medical setting but as a caring human being. I respect her tremendously. I am grateful that she reached out to me in a caring but firm way.

I find you do the same thing with your responses, Alva and I would like to thank you very much. Please keep sharing your wisdom with others.
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Treeartist Aug 2019
NeedHelpWithMom, thank you so much for sharing this powerful story.
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Although it is hard to deal with the emotional toll, this is not your fault or most probably nothing you can fix. Mom is 93, at that age LO's are tired and since she is dealing with other physical limitations you can understand, in part, why she wants to give up. My dad is 90 and cares for my 89 year old mom and it's taking a toll on him. He is finally giving consideration to living in an IL/AL facility over my mothers strong resistance. You made the correct decision to place them in a safe environment......better for them and peace of mind for you (well, at least somewhat). I would think maybe a month is not quite long enough for a complete adjustment.....give it more time and maybe things will smooth out a bit. It is difficult to change the surroundings at that age.....especially if you sense that dementia might be in play. My advice to you would be to take a deep breathe, realize you are doing your best, and let go of the things you can't control. And get some well deserved sleep.....a powerful healer for both the mind and soul. Best wishes.
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Have you given any thought to having her doctor approve her for a hospice evaluation? They will come 5 times a week to get her up, bathe her, check her vitals, skin, and see that she has an easy passing when it comes to that. I would definitely check into that. Also, the chaplains are available for not just her but for your dad and you as well. In my opinion, you should realize she is nearing her end and yes, she isn't the mom you once remember nor will she ever be again. There is no need for guilt for heaven's sake because you can't fix this. Please let hospice be there to assist you three.
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You are not alone. I highly recommend a book by Roz Chast "Can't We Talk About Something More Pleasant?" If you aren't familiar with it, Roz is a cartoonist including for The New Yorker, Scientific American, and more. Her book is unique and about her own journey of caregiving for her mother and father. It will make you laugh; it will make you cry.

Feeling as you do is normal; however, your guilt is irrational. You have done nothing wrong. You did right by your parents even though it was hard. It is sad to watch our loved ones diminish in capacity, become frail and resign themselves to death. Palliative care can help.

Focus on quality of life. Your father's needs are different than your mother's. Spend time with your dad and listen and acknowledge his feelings. You cannot get your mother to want to "buck up" and live but you can hold her hand.
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I love that title, “Can we talk about something different?” Have to look that up on Amazon.
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Mo,

You are a wonderful daughter. I can tell by your writing how much you care. I hope your mom improves soon. I like what Geaton has to say. She is more qualified to speak to you because of her experiences.

My mom is at home dealing with a different set of circumstances. My mom has Parkinson’s disease.

I just want to offer my support and to say that I feel you could benefit from giving some thought to what Geaton has said. Best wishes and hugs.
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MoBryan: IMHO, a medicine check should be in order for your mother. Verbalizing "wanting to die" tells me that she is suffering from depression. That, coupled with dementia, is hard to take for YOU. One big issue that I picked up on is "she rarely eats." Wow - a diabetic who rarely eats is a big RED FLAG. Find out why with the facility - are they not getting meals to her? Are they being left in the hall? Amend that right away!
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I am so sorry. Your mother is gone - she is not who she once was. Once they become like this, there is NOTHING YOU CAN DO. Let her make her own bed which means, don't even try to get her up. Unless you PHYSICALLY FORCE HER, it is not going to happen. Just leave it alone. Go and see your father. Greet her but pay attention to him. You are NOT under any circumstances to feel guilty. She is doing this to herself, not you. You have done nothing wrong. I wonder if perhaps they should be put into different rooms so he has some peace. Let her go and just remember the good days. You don't deserve the guilt - and this will destroy you if you don't accept this and concentrate on your father.
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my2cents Aug 2019
Riley2166 - you make i sound like mom is intentionally going down the drain. An impairment in thinking is letting her lay around all day. Mom is not doing anything intentionally. It's possible she asks her mom to get up differently than dad and facility staff do - sometimes just a little observation can give clues.
As for her asking to go home, thinking she's in a hotel, - let her think it's a hotel. Put her in wheelchair and make the rounds in the facility. Sometimes they have very simple activities - crafts, etc. You never know, she might find an interest.
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