Hello all!

I am new to this site but thankful to have found it.

My mom has been on home hospice since last December (10 months now).

She is totally bed ridden, speaks maybe 1 word a day which is “yes”.

Going on 15 years of Alzheimer’s now. She is 6 foot tall and weighs now maybe 90 lbs? But she still eats pretty good... we have to wake her up because she sleeps around 22 hours a day.

Wanting some advice or comments on how long do most people stay living when they are in this state?

I am living with her and a full time care giver now and have been for 7 years.

Hospice is helpful but give zero true time tables. Has anyone else out there had relatives going through this?

Just ready for my poor mom to go to heaven to be with my dad. We are both just tired!

The very last sentence she ever said to me was about a year ago... “I’m so tired of all of this” was what she said. :(

Thank you all in advance!

Also look for signs of her becoming cyanotic.....a bluish tint of the skin, nails, lips and around the eyes. When my dad's hands and arms started turning a bluish color, his breathing changed and he passed away a couple of days later.

It's shocking to me that your other family members are against you taking respite time for yourself, and against not awakening mother to eat on a schedule. If I were you, I would demand THEY come do the "easy" job of full time care giving while YOU sit back, relax and tell THEM what YOU are against! Sheesh....that is SOME NERVE what they're doing!

I personally think your mother is a lot closer to transitioning than you think. When they sleep THIS much, they're already half way "over there" and getting ready to make the final step.

Sending you a big hug and a prayer that your dear mom transitions peacefully and in short order.
Helpful Answer (3)
Reply to lealonnie1
ArmyAunt Sep 30, 2019
Thank you for saying that! I couldn’t agree more! My 2 brothers are lazy and would never help. They said I am the only one financially able to stay home. But this is because my husband works a lot just so I can be home with her.
I feel they don’t really understand respite.
For about 2 weeks mom has been eating less ( she never ate much), but continues to drink her ensure through her straw. She will have most days 2 bottles total for the day.
shes not walked in about 2 years.
bedridden about a year. Wears diapers for 3 years at least.
absolutely knows no one at all for 2 years.
I felt like 3 years ago she was going to be gone any day. But, she keeps hanging in there. Has not been able to hold her head up or sit up for a year.
I wish I had wrote all this down because I can’t remember exactly how long each sign has been...

maybe it me getting Alzheimer’s!!!
While she is eating well there is little chance that this will not be prolonged. I am so sorry for your pain. Hospice is correct. Without a bed sore, an infection that goes systemic, this can drag on and on. I am terribly sorry to be bearer of bad news, but there just isn't a time table. Speak with her doctor as well. I am afraid you will get the same answer. People who are not demented often take things into their own hands and stop eating and drinking. Even without food one can live more than a month. Without water and food about 4 days. But that isn't an option. Mom is still choosing to eat. I am so sorry. Allow her to sleep. There is utterly no sense to her having to be wakened. I am glad you are ready for Mom to leave you for there is no upside to this and it can't be fixed. Bless you for your loving care. I am so sorry for your pain. Recently read a book by an actress (plays) whose Mom took many years to die in this state, cared for at home. An Irish name. Wish I could remember. PS....Guilt? You have to be kidding me. Does it get better than what you are doing for your Mom? Is there a better way? I very much doubt it. Is it that you feel guilty that you wish for her peace. Because I spent my life as nurse. You have no idea the people I long to have released from torment. I don't feel guilty about that. I feel kind. I know that you are, as well.
Helpful Answer (3)
Reply to AlvaDeer
BarbBrooklyn Sep 28, 2019
Kate Mulgrew?
See 4 more replies
I don't have suggestions. Or advice. But just know that there are people out there that are empathetic and feel for what you are going through.
Helpful Answer (3)
Reply to lynnm12
ArmyAunt Sep 28, 2019
Thank you ❤️
My grandma lived for 10 years never saying one word.

I don't know if anyone can tell you how long she has.

I pray that The Lord gives you peace and strength to endure the end of this journey, no matter how long it takes. May he give your mom a peaceful passing.
Helpful Answer (3)
Reply to Isthisrealyreal
ArmyAunt Sep 28, 2019
Wow, that’s a long time!
Did your grandma sleep most of that time also? Just trying to compare I guess. I am thankful for hospice but still is hard.
Thanks for sharing
Welcome to the has been an invaluable source for me. I found the following on the hospice site the other day...thought it may be helpful:

It is important for caregivers to know when an individual with dementia is nearing the end of their life, because it helps ensure they receive the right amount of care at the right time. It can be difficult to know exactly when this time is due to the variable nature of dementia’s progression, but understanding common end-of-life symptoms of seniors with dementia can help.

Final Six Months
- A diagnosis of another condition such as cancer, congestive heart failure or COPD
- An increase in hospital visits or admissions

Final Two-to-Three Months
- Speech limited to six words or less per day
- Difficulty in swallowing or choking on liquids or food
- Unable to walk or sit upright without assistance
- Incontinence

Final Days/Weeks
- Hands, feet, arms and legs may be increasingly cold to the touch
- Inability to swallow
- Terminal agitation or restlessness
- An increasing amount of time asleep or drifting into unconsciousness
- Changes in breathing, including shallow breaths or periods without - breathing for several seconds or up to a minute

Patients with dementia are eligible to receive hospice care if they have a diagnosis of six months or less to live if the disease progresses in a typical fashion. Once a patient begins experiencing any of the above symptoms, it is time to speak with a hospice professional about how they can help provide added care and support.
Helpful Answer (2)
Reply to SonOutOfState
ArmyAunt Sep 28, 2019
She’s had all of the last 2 paragraphs except for cold hands. It’s been 6 months since she had any shallow breathing.
most days she just sleeps. I turn her every 2 hours. Today she’s slept about 22 hours.
It is amazing how some people can just hold on so much longer than seems possible!

I am with you on not waking her up but understand the majority rule issue here. Obviously that sustenance is keeping her alive yet her quality of life is a big fat zero. Such a fine line.

I hope that she passes quickly and peacefully when it is her time. Probably in her sleep!
Helpful Answer (2)
Reply to againx100
ArmyAunt Sep 28, 2019
Yes!! I hope she would just go in her sleep with no pain.
some days she will sleep 24 hours and you just CAN NOT wake her no matter what. Almost like in a coma... then the next days she’s waking up every 3 hours batting about in there. I have a camera so can see her from my phone while she’s in her room in bed. I keep music going for her.
My hospice told me that Alz lasts an average of 3 years when they reach the stage when they can only speak one word. We took mthr off everything that would prolong her life and she's only on a pain med for her severe arthritis. We know she had elevated liver enzymes at her last doc visit, but we are doing nothing about them. I'm also not giving her a pneumonia shot, as that would be the easiest way for her to pass. That also means she's not getting a flu shot - the easiest way for her to get pneumonia is for her to catch the crud or the flu. I hate seeing her unable to move on her own, to not be able to follow a conversation or tv program, or anything.

Her advance directive says she did not want any treatment with anything except pain meds if she were terminal. She could live 3 mos or she could live 2 years. But she won't be getting antibiotics or IVs, and when she stops eating, we're done. Currently she's in a home where she is fed every meal.

Total care is too much for one person alone. I so hope you have help. It's been a terrific relief for me not to have to change my own mthr's diapers. Mthr receives hospice care in her memory care unit which has been so good to her. I get to be a daughter /friend, and not worry about the little things. I also have a life of my own, which of course she would want. This board is such a vital source of info and support!
Helpful Answer (3)
Reply to surprise
ArmyAunt Sep 27, 2019
I agree. No flu shot for my mom but hospice said “ they don’t do flu shots”.
My mom never gets out of the bed at all ever. She does have a air mattress that hospice gave which keeps bed sores away.
Also one odd thing she does from time to time is sleeps sooooo deeply that she can not be woken even when shaking her.
But we feed her ensure, pudding and yogurt and maybe some mashed sweet potato.
She would sleep right though but my family says we need to wake her to make her eat. I am against that but out ruled.
Im glad your mother is getting good care in the nursing home.
It’s good that Hospice is being helpful, and they may in fact be bending rules for you. There is usually a rule about how quickly a condition is likely to be terminal, often 6 months, and their vagueness about timelines may be so that they can keep giving you assistance.

My dear MIL died at 99, and she was unable to speak for 3 years before that. If your mother is eating well but still losing weight, that can be a symptom of cancer – does that seem likely?

I know how exhausting it can be for all involved when things go on and on. You must be very very tired. I hope that at least you are able to get enough sleep, because of your mother’s long hours of it.

You have my sympathy and best wishes, Margaret
Helpful Answer (3)
Reply to MargaretMcKen
ArmyAunt Sep 27, 2019
My mom has had Alzheimer’s for 15 years now total! It seems like any day she could pass but what do I know. This is my first go around.
I have often wondered that about hospice. My mom is on no medication at all. She seems to never be in pain. She does get super constipated. So we give one dose of over the counter med for that.
Welcome to the forum. I’m glad you have a full time caregiver. It sounds like you need it.

I don’t have experience with dementia or ALZ. My heart goes out to you. I’m sure it’s extremely difficult and exhausting. Just wanted to offer support and tell you that we understand. Some people here are currently caregivers and others like myself are previous caregivers who received help from the forum during our caregiving days. It’s tough, whether your family member is at home or in a facility.

I did care for mom in my home for nearly 15 years so I can relate to how exhausting it is, both physically and mentally.

Others that have experience with ALZ will help you with your concerns.

Many people with a devastating illness becomes so tired and I truly believe that they are ready for their life to end. Honestly, I think I would feel the same way.

You sound very loving towards your mom. What exactly are your concerns about hospice? We had hospice take care of my oldest brother before he died. He was in an end of life facility and he received very good care. The nurses, social worker and chaplain were wonderful.

Helpful Answer (2)
Reply to NeedHelpWithMom
ArmyAunt Sep 27, 2019
Awww, thank you for your kind words. Yeah, it’s been a long row to hoe as they say. I’m hanging in. Just feel sorry for her ( and myself) some days. This is a wonderful site. I just stumbled upon it really!

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