When consider moving to medicalized home?

Leilamoony

Hello to all,

My mom has Alzheimer. She’s stage 5 going into 6 for those who know about the levels. I have 3 care givers at her home who shift and take care of her, alongside my sister and I who manage every day and shift twice a week. My mom is still pretty healthy (though declining as her brain says no to everything) as in she walks (though sometimes with pain), she eats by herself (though we cook and coordinate meal timing), she showers (though we wash her). I wanted to get some feedback on your experience: can a person with Alzheimer fully stay at home until the end or not? If the latter, when and at what stage would it be the right time to do so, if ever? (ideally we’d like her to stay at home the longest possible). I’m asking as in some countries it’s really tough to find a nursing home room and some even have yearly waiting lists which makes the whole process even more stressful as you need to bet on the right time you’ll need to transfer to a nursing home. I’d appreciate feedback on your experience. Thank you very much.

May flowers

Hello, sorry you are going through this too.

I believe with the right skilled help and equipment, it is possible for a person with dementia to live at home through the end. It is very hard though and probably comes down to what support you have, equipment, caregivers, and your own emotional and physical fortitude. You would also need breaks for yourself.

For us, stage 5-6 was the hardest because he was physically still able to do most things but his cognition had declined to the point that he was a flight risk, was very bored/anxious, and difficult to manage because he didn’t believe he had dementia. We had to put alarms on doors and on his bed so we knew he was getting up, for example, as he might walk outside at 2am. We put my father-in-law in memory care for a year and it worked out well, especially at first, but he came back home with us for stage 7 after a fall/surgery. 

It is hard now, but a different kind of hard. I don’t know if you have hospice where you are, but here they provide hospital beds, lifts, wheelchair, and supplies. He has a weekly nurse and CNA visit, he is followed by a doctor and social worker as well. 

To give you an idea of what caregiving looks like in later stages:

Assistance with walking (gait belt) to lift transfers, changing pull ups to changing diapers in the bed, assisting in the shower to shower chair to bed baths, assistance with feeding to complete feeding, changing the type of food from regular diet to food chopped up very small to puréed food and thickener for liquids, meticulous skin care and repositioning to avoid bedsores, medication to manage anxiety, agitation, sleep issues and such, loss of ability to communicate so you will have to anticipate what they need as they cannot tell you, emotional loss of having them no longer recognize you. 

For me, stage 7 (once he was immobile) is less exhausting is less than stage 6 when I had to have eyes on him 24/7, and follow him all day,  but the emotional toll is hard and without the right equipment it would be very easy to hurt yourself with turning and transfers. I can walk away and do a quick chore, like load the dishwasher with a camera on him, but I am still tied to the house. Caregivers at this stage are more CNAs or retired RNs as I have found they can better handle using the equipment and know how to turn him properly.

So, all in all, it comes down to what kind of caregiving and healthcare support and equipment available to you, as well as your own strength and personal support system. It is a hard road! 

If it were me, if a nursing home wait list is a year or more, I would put my name on the list just in case. I assume you can change your mind if something opens up.

Hope that helps!

Battlebuddie

   May Flowers post is spot on. I like the way MF broke down the deterioration of things like eating and bathing. 

   My husband is home with me and has been his entire 6 year journey. We are now Stage 7 . He is on hospice , bedridden , sleeps all but meals, and is hand fed. It IS possible to keep a loved one home and do it successfully, especially when Hospice joins the team. 

    For us what has really helped us successfully do it is that  he always slept through the night. ( thank you Mirtazapine)  Also his psychotic phase was short lived as in about 5 months and controlled by meds ( thank you Serequel) He also took some sort of steep nose five into the bedridden stage and began sleeping ALOT . So I get breaks where I can take care of my self because he is sleeping. 

   So a lot of it depends on the loved one and the way the illness presents it’s self. I agree with MF that six can be the worst of all stages in many ways. Many people get placed in Stage six from the psychotic behavior and wandering. But as in MF case, nothing is written in stone. Some people go in for a while and can be brought home later . 

    Good Luck! 

jfkoc

Yes, it is possible.  My husband died at home with 24/7 care and Hospice.

mommyandme (m&m)

As the others have said, yes its possible. That’s my plan A for my mother who is now in late stage 7. Just moved the hospital bed in the living room yesterday. My mother has not been very mobile for awhile so that makes some things easier, some things more difficult.  If she was an aggressive move arounder, yeh, I wouldn’t be doing this.  I did get my CNA license to be better prepared for this task and so grateful for the practical knowledge I received. We also have a caregiver service and hospice on board which gives me much needed breaks.  Without these breaks, yeh, I wouldn’t be doing this…cause I’d end up in a mental institution.

Since mom got her funds in order for her end of life care pre diagnosis and I’ve had some training, think we can have her pass at her home.  It may really depend on the people (personalities and history, er baggage) involved with this nightmare that determines the approach.  Really have to set clear boundaries for yourselves which is sometimes difficult.  Gotta know your limits.  Also the communication between you and your sister should be safe and honest while making decisions.  

I hope most of your days are more easy than difficult.  Thanks for sharing. 

gradomomhama

Where do people find the stages with numbers? I can only find early, middle, and late stage models. I just stepped into needing to help care for my mom in May and I'm still learning, and it's been very frustrating.

mommyandme (m&m)

Here’s a quick copy of the FAST scale:

https://www.compassus.com/sparkle-assets/documents/functional-assessment-staging-fast.pdf