Advice on DM with Alzheimer's

[FarriersGirl]

My DM aged 89 has Alzheimer's, a fairly recent diagnosis although her short term memory has been failing for a couple of years and is worsening. She still lives alone in her own home with support from a care package and my DS who lives close by. She comes to me for a week at a time approx every 5-6 weeks. I used to enjoy these stays but they are becoming more and more difficult in all sorts of ways. She is less mobile, very forgetful [although she rarely acknowledges this] more argumentative, very fussy about food that she used to enjoy and can be very rude in public which she would never have been a few years ago. I try hard to entertain her and make her happy but by the end of the stay I can't wait for her to go which makes me feel awful. I'm not sure there are easy solutions , this is a bit of vent TBH, but any thoughts or advice on managing this would be welcome.

Short answer is stop the visits, go to her for shorter bursts, and get more support. My MIL has advanced Alzheimer’s. Lives next door, and there is no way I would go it alone for a week. Honestly, don’t do it to yourself, there is no need and it’s not productive or right for either of you.

It will progress so make plans knowing that.

My Mum died 3 years ago. I inherited Dad who was never the most confident of people, but a lovely and patient person.

I would care for him with a daily phone call, then video calls because we are 100 miles away, then he started having falls, then he was diagnosed with mixed dementia (vascular and alz), then he was getting confused during video calls, then he fell again, then the hospital started rolling their eyes at me!

We knew we needed a plan. And his only options were carers calling in (didn't want random people calling in, a care home (didn't want that) or to try and move to live with us and see how it went (his choice and one we were prepared to offer).

He has been with us a year now. I cannot deny my world has shrunk rather. He needs more and more help as the condition progresses. He's had a bad week (behaviour and mood changes) and I almost thought we were close to the end of the care we could offer but he has improved a bit so maybe not.

The plan is to care for him 24/7 and have a months respite in a care home at least one a year (he's had one month earlier this year). Sell his house and make his money buy as many care home years as possible as we know there will be a limit to when we have to call it a day. We've had what I call "fecal incidents" and these behavior changes and I believe if they become more sustained then we will have to hold our hands up and say this is beyond our ability.

So, what I'm trying to say is, be aware this is the start of a progession of her decline. Look at the whole situation and discuss a plan with your siblings. Otherwise "just helping out" will simply become more and more burdensome.

Good luck. Its hard. Beyond hard at times.

Thank you, yes you are right about having a plan. My DS does a lot day to day so her coming here is a way of giving her a break from mum, but as the PP says there is a limit and its hard to know where to draw the line. I'm about 100 miles away so not easy to pop back and forth. Stepping up the care package is probably the next step although DM is not very co-operative😣

If nothing is done then something will happen, she will end up in hospital, and the situation will be taken over by social services unless family step in to sort it. At that point it's not so easy to plan because you have a crisis in front of you. However, it may never happen, of course.

Just after Dad moved in with us he had a hospital admission with an infection and we saw a lot of elderly people going through this and waiting for care packages to be put together to enable release. Dad they were quite happy with, knowing as soon as he was deemed medically fit, he could simply be released back into the wild to us.

If you can't wait for her to leave after a short stay, don't put that option on the table. Honestly, it's very hard at times with a (generally) quiet, patient, person. I know if this was my Mum and not Dad I would not have been able to offer this option. Entirely different characters.

It does seem like carer visits are the way to go. I don't know what happens if she refuses but hasn't hit a crisis point. We just about avoided that stage.

By having carers to give respite to your sibling, they can say which times or days visits would be best scheduled. I believe you can start with just a few and build up over time.

Getting carers in place can take a while in some areas so it's worth exploring as you are planning. Dad took a while to get to the top of the care home list for respite care. Now he's on their list they will call us later in the year when they next have a space available.

Why should your DS’ life be limited by this? The elderly never do want care, but they don’t see the effect it has on their ‘loved ones’. Do you expect your DS (assuming this is sister rather than son because you said her) to lose her remaining good years to your- joint- parent because it’s what mum- with Alzheimer’s, so not entirely with it- demands? How would you feel about this if you were the nearest? It’s very easy to say ‘relative’ who lives nearest does a good job. If you can’t guess I’m the nearest, I live next door, so no end of failed promises and acting like a tiny bit of help is a huge deal. There is professional support available, for the love of god use it. If your DM was able to make decisions she wouldn’t have carers, so don’t let her and your guilt ruin your DSis’ life.