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littlemisskitty Asked April 2016

What do others do in the final stage of dementia?

My grandma is at stage 6 out of 7. She's walking barely, talking barely, and sometimes will feed herself but that's getting to be a rare occasion. She's having accidents but usually it's management and just urine. She's getting a bit meaner towards me lately hitting and kicking or even pinching. It's only to me so far though.

I'm in the process of moving. I was asked by Maine what I needed from them. They were wondering if I wanted in home care like I have here or if I wanted her to be in a skilled nursing facility of my choosing. Mom had wanted her to be in a nursing home. She made my sister and dad promise they would force my hand at it. My mom didn't want me giving up the rest of my life caring for her since I'm 37 and since having cared for my mom and grandma for the past 5 or so years, I have given up my job, any chance of marriage having been home bound minus doctor's appointments and been home bound minus doctor's appointments.

My dad has been providing for us until this point but that must end as he is retiring. This is not his mom so while he's been helpful in sitting in the room with her, he is not a good caregiver and gets greatly irritated by her so he helping is not an option. He's been generous just to support and allow her to stay in his house after losing his wife in January.

What my question is, knowing what the final stage of dementia is, how many of you were able to handle it at home alone? Do people typically put the people in a home at that point since they no longer recognize anything including their surroundings? I'm trying to figure out what is best for both of us. I just know with her being abusive at times, it's upsetting my dad and I'm worried I won't be able to care for her if she's bedridden and still not willing to cooperate.

The choice is mine since I have POA and Health Care advocate. I just wanted advice on what others have done in the past and if they have had good luck in caring for a bed ridden elderly parent alone who weighs more than them.

Also at what stage does hospice kick in? Is there a time period where it's obvious they should be involved?

Sunnygirl1 Apr 2016
You say that your father is retiring and that your grandmother's aggression and acting out annoys him. Plus, this is not his mother, but his deceased mother's mother, correct? I would think that your father certainly has a right to enjoy his retirement. The house will be his house, right?

Being around a dementia patient who is aggressive and in need of constant care can be extremely stressful. Even with outside caretakers coming into the home, I would think it would create a stressful environment for your dad. I can't imagine doing it.

Plus, how many years can you stay out of the work field? Even though your grandmother is late stage, she could still survive for years to come. I think I would read about what happens in the final stage and try to envision if that care could be provided in the home you share with your father. I think I might be more concerned about how it would effect him than myself. I would want to create good memories with my father in his senior years. Your father has been very generous towards your grandmother. I would take his feelings into account here. You can still be a good grandson to her if she is in a long term care facility. I wish you all the best.

Smeltzer31970 Apr 2016
I brought my Mom home on Hospice care, they were a great help. But in our case she was end stage no longer wanting to eat and could not walk, After being in the hospital twice with urinary infections and pneumonia I decided on allowing a natural death rather than putting her through anymore...feeding tubes ect...I would talk with her Doctor see what they think. It is possible to keep them at home.

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pamstegma Apr 2016
Start with the home care and ask about visiting nurses. She will need some calming medications for the move. Moving a dementia patient can trigger some violent panic attacks. With proper meds, she can stay with you right to the end. Hospice does not kick in until a doctor determines she has six months or less to live. I don't think you are there yet. You are a very special person for taking this on. God Bless.

jeannegibbs Apr 2016
Each situation is different, littlemisskitty. Each set of symptoms is unique and each caregiver's strengths are unique.

From the sounds of it, your situation might be such that you'll either need lots of in-home help or a care center. I'd kind of lean toward the care center, for the same reasons that your mother wanted that. Time for you to get back into the workplace and start rebuilding your own life. Caring for a bed-bound person who weighs more than you is a huge challenge.

I was able to keep my husband home through his final stage of dementia. At the end he was on hospice care. He was only bed-bound the last few days, and he was very thin at that point. I honestly don't know if I could have sustained that level of care alone very much longer.

My mother has moderate dementia. It wasn't so much the advancing dementia that caused us to place her in a nursing home, but her deteriorating physical health. She now cannot place any weight on her feet and requires two people to help her transfer from her wheelchair to the toilet, for example. She was on hospice in the NH but recovered nicely and has been in the NH for two years now. She really is thriving there and has many more opportunities for social interaction and entertainment that we could provide at home. It was a good move for her.

Hospice is appropriate when you and the medical team thinks the end of life may occur within six months and there is nothing curative that can be done. Its focus is on comfort care and quality of life. It can be provided in a care center (as additional care to what is already being provided), at home, or in a specialty Hospice House.

You've been amazing to care for your mom and now your grandma, and try to keep dad happy too. Awesome! I'm sure that whatever decision you make in love will be the correct one.

Keep in touch here. We care!

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