HELP! What do we do next?

TK67

Since June 2021 my mother has been living in a memory care facility.  We were told when we got there that mom could "age in place" however we are unsure now.

A hospice nurse checks on mom once a week and a hospice aid tends to her for about an hour, five days a week.

Mom is 78 years old and in late stage Alzheimer's. She spends about 95% of her time in a wheel chair and needs help to walk with a walker.  She can hardly hold her head up.  Needs assistance to toilet.  Her fingers have gnarled up where she can't hold anything.  She doesn't say much but when she does her speech is slurred and we can't understand her.  She started choking about 6 months ago and now is on a pureed diet and thickened liquids.

With all that being said her hospice nurse says that mom's vitals are good.  The caregivers at the memory care facility report to me that mom is refusing to eat or only eats about 25% of what is given to her (pureed diet).  My sister and I take snacks up to her of applesauce, yogurt, pudding, etc. but mom doesn't each much of that either.

My question is what is next?  When everything gives out, she doesn't want to eat and is bed ridden what do we do?  Does she need to be in a skilled nursing facility? 

Any help, advice, stories to share would be appreciated!

Stuck in the middle

My mother did that at the end of her life.  I think your mother is ready to go, and all you can do is accept it.  I do not think any other placement would be better for her.

If I get to your mother's condition, as you describe it, I hope no one tries to drag out my dying.

jfkoc

TK...one thing you can do is to check all drugs ( including vitamins and OTC) for side effects and any  interactions. I use drugs.com but there are other sites on line.

Cynbar

You may not need to do anything, if the present facility can accommodate her needs. It does sound like this is natural disease progression for a late stage Alzheimers patient. She will most likely be bed bound before too long. Have you spoken to the staff at her memory care facility about how they will manage a patient at that stage? Are there other patients at the end of their journey in her area? Some places allow their residents to "age in place" but require the family to pay for additional private care at some point. Now is the time to be upfront with the facility about what they can handle, so that if you need to look for skilled nursing, you have a little time to make a good plan.

harshedbuzz

This sounds to my ear like progression of the disease toward the final stages.

The lack of appetite is very common. Even if she's not expending much energy moving about, she's likely going to start to lose weight which is expected in the later stages. The choking and weight loss of 10% are indications of disease progression.

What to do next depends, in part, on the point Cynbar made. What plans and expectations are there for end-of-life care in the MCF where she lives now? Many places that allow a resident to age-in-place, expect the family to bring in more help as you have with hospice services. Some might want a private aide for part of the day as well. At that point, it might make financial sense to move to a SNF or not. 

My dad passed in MC. They'd ordered a hospice eval a few hours before he died. It was nice to have the private room and less clinical setting at the end. My aunts with dementia both died in a SNF. One aunt was placed because she broke her hip and needed a higher level of care; she also needed sitters to help her if she tried to get out of bed or tear at the soft cast on her broken wrist. The other had been in MC for several years but needed more hands-on care for feeding and such. She was able to transition to SN while still spending most of the day in the MC wing for activities and socialization. Because she had plenty of money, she was able to have a private room in SN; not all places can accommodate this. 

HB

Cynbar

For many people, end of life is a peaceful process, especially when pain is not an issue. Sometimes there is a period of restlessness called terminal agitation, but the hospice nurse will be very helpful at controlling this, as well as other symptoms such as anxiety and secretions. The person stops eating and drinking, their body doesn't want/can't handle it anymore. The main needs are changing, repositioning, and administering medications as scheduled. Hospice will make daily visits to monitor, and they will probably send in daily aides to help with some of the personal care. Speak frankly with the facility about their ability to handle a scenario like that, and ask specifically under what circumstances would they ask you to hire additional help. That will give you your answer.

OutsideLookingIn

One other thing that I, and several others in my family have learned, is that sometimes the dying person needs to hear that he/she is loved and will be missed, but you understand he/she is ready to be freed from the burdens they have borne.  They sometimes are holding on out of fear/regret of abandoning the ones left behind.  It isn't an easy discussion to have (my brother was horrified when I did this with our aunt) but is sometimes the kindest thing to do.  

My best wishes to you in this process and prayers that it will be peaceful

OLI