Mom with VD in final stage need advice

DotBern

Hello,

I've connected with others in the past here and have always appreciated the support and thoughts/suggestions from others.

Mom has VD likely mixed with Alzheimers. 2.5 yrs since diagnosis. Likely had mild stage for a year prior. I am an only child. I placed Mom in a MC assisted living facility when it was obvious she could no longer take care of herself. I am amazed at her quick decline. I am happy for the most part with the care of mom and the staff at this facility. I moved her from another facility after 15 months because I didn't feel safety was a priorty and they had high turn over etc . She entered into hospice care two weeks ago when I was noticing she was no longer interested in the candy bar I would bring her and she no longer was interested in eating. She is likely wheel chair bound any time now, having difficulty walking even with her walker. She started with overchewing her food and then spitting it out. I'm told she is forgetting to swallow or how to swallow. I began spoon feeding her with some success. This week she is refusing solids and will drink her tea and have had success with Ensure. She has become incontinent for the most part but does use the toilet as well. She is beginning to rock and keep her hands tucked close to her chest. I see her fading. She has lost 42lbs in the past 6 months. She was overweight to begin with but the loss is noticeable. She has had two falls since being placed on hospice. Luckily, with no injury. She has probably had 7 falls in the past 7 months at this new place. Only one fall took her to the hospital with a large bump on the back of her head. She was OK and released. I believe she needs 24/7 care now and should be in a wheelchair to prevent falling (although they fear she will fall if she stays in a wheelchair if she tries to get up without realizing she could fall out of the chair. She is very fearful of dying and I can tell knows something is wrong. She had a bloody nose the other day (dry air) and she was panicked that she was dying. I now have Ativan prescribed if and when she gets like that again.

No one can tell me when the end is here but I can see she is declining rapidy. She still knows me and talks a lot although most of what she says doesn't make sense. My question is should I take her home with me. I know the decision is mine ultimately but I don't want to confuse her more. I am somewhat worried about caring for her 24/7 and would use the money saved from the private pay facility to hire help during some hours of the day to give myself a break and be able to grocery shop etc. I'm worried that she is not having eyes on her at the facility as much as she needs to. She can no longer do much of anything for herself. My personal gut feeling is that it's a matter of weeks perhaps a 3 months till she's gone but I am no expert either. I just believe she deserves more in this final stage.

I'm planning on meeting with the hospice nurse and/or social worker to ask the same question. They work very closely with the staff and management at the MC facility. I want to be with mom as much as possible so I can treasure what time we have left. I know she would have more visitors at my home because I would be here to "help" others be more comfortable with her. I'm also concerned for her safety. The staff checks on her hourly and try to keep her in their sight line throughout the day. She is no longer active in activities. The facility allows residents to stay until end of life. I'm just not sure it's right for her to stay there. Any thoughts? My heart is heavy and it's tough to see her become so fragile. Thank you for reading and your thoughts.

harshedbuzz

@DotBern

Predicting end of life is difficult. We were told that loss of 10% of body weight to be highly predictive of death within 6 months. That was the case with dad despite strong verbal skills and a decent appetite.

That said, my auntie who was initially diagnosed with VD around 2008 and developed ALZ about 5 years later went through a few cycles where she appeared to be signaling end-of-life for as long as 3 weeks and then would bounce back to her previous eating and engagement.

A couple of thoughs—

I sincerely think she won't have more visitors. Visiting a LO with dementia is something many people actively avoid. It can be difficult and painful, and many will play the "I want to remember her as she was card". You may find your friends avoid visiting as well.

Bringing a late stage PWD into your home effectively turns it into a SNF-for-1. If you're OK with that, it's cool. Do you have a spouse, adult child or roommate who would be impacted?

Can you provide the same level of care in home? Is your home suitable for a person using a wheelchair? Do you have steps into the home? Could you get her out of the house solo in an emergency? Is there a pool of trained and reliable aides in your community? Is you mom a 2-person lift? If so, you may need more help in the home when you're there to attend to her needs. Are you physically up to hands on caregiving or do you have health issues that might restrict your abilities?

At dad's MCF, we were able to stop in 24/7 and spend as much time as we wanted with him. This might be a way to satisfy your need to spend more time with mom. I've even heard of spouses moving in to be with their LO.

HB

Emily 123

It IS such a personal choice, isn’t it? You’re the one who will have to manage the care. If you think you can do it (and it sounds like you want to try) then go for it. I always take a legal pad and make ‘pro’ and ‘con’ columns and use that to sort out my thoughts, but it looks like you’ve done a lot of that already. Good luck!

MN Chickadee

Only you can decide what is best, but just wanted to say that my mother passed away in a memory care facility and it was fine. I could come and go 24/7. Hospice told us when the end was truly near (there are tell tale signs of being within days of the end instead of weeks) and I spent most of every day there at that point, but was still able to leave for an hour here and there for breaks. The aides were good at caring for her (and me - very supportive and made sure I ate and was comfortable) hospice was very skilled and supportive, and she had a peaceful passing. The facility had a chaplain that came to see her a few times at the end and her regular church pastor also came. I was not in a position, logistically or mentally, to care for her round the clock at home. It's very physical work to rotate the person to avoid bed sores, change diapers etc. not to mention the emotional piece. The swallowing issues do suggest it won't be long, although some people do linger in that phase for weeks or months living off ensure and pureed food. It doesn't take that many calories to keep a sedentary body alive. But once she quits drinking much water it won't be long, days or a week or two. As she declines she will likely always be either in bed or a broda chair (provided by hospice) and become more out of it. The staff may move her broda chair out to where they can keep an eye on her, but at that point she's not going to be moving or trying to go anywhere. I'm sorry you are facing the end, it's hard.

H1235

Some people with dementia can be resentful and angry with family members that try to help them ( showering/washing up, help with toileting etc.). If there is any hint she may have these kinds of issues I would be careful. You don’t want to spend her last weeks/months arguing about the need for her to accept your help. But then again maybe by the late stages that struggle to hold on to independence is not there. If things don’t go well moving her back may be an issue (waiting list to get her back in) and just a lot of work and confusion for her. I would say follow your heart, but I think you have a lot of practical matters to consider as well (HB gave you a lot to think about).

SDianeL

my DH was quickly declining and would forget to swallow or couldn’t swallow. He aspirated on pudding. I made the difficult decision not to treat the pneumonia. I didn’t have time to call hospice but the facility started hospice protocols and he passed peacefully the next afternoon. I stayed with him all day the first day and went back early the next morning. The facility was wonderful. Hospice may help you decide. Praying for you and for your Mom’s peaceful passing.

DotBern

Thanks to everyone who responded. Your insight, thoughtful, kind responses gave me much to think about. I've decided it is best to leave mom where she is. She is a two person assist and although I can hire help, I wouldn't have help through the night and would rely on my husband. It wouldn't be fair. I totally hadn't thought about bed sores and the need to reposition them. I'm happy to learn I can visit 24/7 and will spend more time with her every day while I can. I still see the decline each day. I was there this morning and they were allowing her to sleep late. She looked quite peaceful and I didn't want to bother her. My husband just came home from an 8 day hospital stay for a blood infection. I am nursing him back to good health. It's been a rough couple of weeks but I can now concentrate on being with mom longer each day while hubby is home and on the mend. I've been juggling visits between the two. Thank you all so much for caring. It's such a journey for the caregiver and the pwd. God bless!

Emily 123

That sounds like a good decision Dot. Home care is a lot, and once you think about all that's involved in a move it 's often easier on your loved one to leave them at a facility where they'll have the resources and you don't have to worry about all the heavy lifting or making sure you have enough help.