Expert: Mary Gordon - 9/26/2006

Question
Hi, there-

Maybe there isn't an answer for this question but I thought I'd
try.

My mother is 77 with stage 5-6 Alzheimer's.  She has care at
home (5 days a week) but she seems to have been deteriorating
a little faster lately.  I think it's time for more care both for her
day to day physical safety (she also falls) and for medication
supervision.  At this point she is still fine taking care of her own
hygiene.

I know there are no rules in this awful disease, but is your gut
instinct that I would be better off getting her 24 hour, non-
family member care at home or moving her to an assisted living
facility that specializes in Alzheimer's care?  I know she very
much wants to stay at home, but that seems to be because she's
afraid we're going to "put her in the loony bin."  (Don't know
where that came from, but there it is.  She was always reluctant
to discuss options earlier and now, well, she has Alzheimer's.)  
The local assisted living place seems very nice (not that I'm an
expert) and I think she'd enjoy the opportunities for socialization
outside of one caregiver at a time.  And I hope she'd eat more.

Bringing her to another family member's house isn't an option
because we all live out of town and she has a boyfriend of many
years in town that she wants to stay near.

Any insight you could share would be much appreciated.

Answer
Hi Alison

Having been through this with my mother in law....listen to your gut. Its time. She really does need supervision and support 24/7. Consider this is as good as things are going to get, and its all down from here - she is going to get worse, much worse, and I know you know she absolutely is past the point where she can safely be alone.

You can't predict the rate of deterioration, or what might happen next - so tonight might be the night when she gets up alone and disoriented at 3 am and falls on the way to the bathroom.

This stage is so hard, since she is still somewhat herself, and at the same time, profoundly NOT herself in an ever escalating way. Suddenly, it will look like every loss is a huge one. The way I look at it, its almost as though prior to this stage in the disease, they are silently and invisibly running through the excess capacity in their brains. But once that is gone, they hit the wall, where they are holding on by their fingernails. It will seem like every neuron that winks out takes with it something big in terms of abilities. Her care from here on in will be heavier and heavier and more and more demanding on every front (ie. very shortly she will need full support and supervision with hygiene).

I know you know that on top of memory, the AD is impacting her judgement, ability to reason, her depth perception, her muscular coordination and balance, her sleep patterns. The fact she is already a fall risk is a huge red flag - it doesn't take much to break a hip, and that starts the end spiral for so many people.  She shouldn't be alone with household appliances, cleansers, medications, hot water etc. Would she know what to do in an emergency? Would what she did be sensible? Might she let a strange who came to the door in ?

I could tell you some flat out terrifying episodes we had with my mother in law when she was still in her apartment. We had a housekeeper 5 days a week, we were 10 minutes away and over there a dozen times a week, we had a visiting nurse and physiotherapist coming in. We had meals on wheels lined up for hot dinners. We had a social worker on tap who did regular assessments on whether she was safe to stay in her apartment. She had other family and friends who visited. We had a taxi service lined up with the bills sent to us. Despite all that, she did a couple of very, very scary things before we accepted that it was time for assisted living (including an overdose).

She is never going to see what you see. Her poor injured brain just won't let her have the clarity of insights into her own problems and deficits - much less let her understand rational arguments or make good choices based on the information you present. Change is scary for her. The world is becoming an unfathomable jumble. So the day will never dawn that she turns to you and says its time to move, much less endorse any plan you come up with.

Consider that any move will be distressing, and moving in with any family member would only be a stop gap. Assisted living in a dementia facility is the option that provides the best option that will have the longest viability for her.  So, you do what you have to do. Don't ask for her permission. If you do feel the need to tell her, don't dwell on it or keep reminding her if she seems to have forgotten (my inclination is not to tell, since it gets the person all wound up for nothing, given that there is no real alternative).  My 2 cents is that you are the grown up with the intact brain, so you can't avoid the burden of doing what needs doing - you just have to accept that she may not be happy or grateful, but you are doing the right thing (just like a small child may not be happy or grateful you've stopped them from playing somewhere dangerous).

You don't want to end up in a crisis and/or a panic if you wait longer. You make the arrangements. Then you get her out of her place for a day or two by packing her off to visit a relative or friend overnight while you do whatever packing and moving (don't involve her or ask her to participate - it will be profoundly upsetting and disorienting to her, and accomplishes nothing since she won't be able to "help" with choices).  

Get everything moved, her room all set up and pretty, with whatever of her own things she can bring (pictures, a comfy chair, etc.). Then, when everything is in place, bring her. Tell her whatever you have to tell her, including white lies. She WILL adjust. And it will be better for her, as you observe, in terms of social stimulation, supervision and supports, food, access to services and activities.

Hope this helps. I think you are being very wise. Hang in. Making the decision is the hardest.

Mary