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Elderly parents

First steps supporting someone with Alzheimer’s

32 replies

TheChosenTwo · 18/09/2021 10:56

Sorry, I’m sure this post has appeared hundreds of times but I would really like some advice.
My grandad has Alzheimer’s and is rapidly declining in his ability to keep himself and his home under control.
He doesn’t live locally but I’m the only family he has. I hold PoA but haven’t had to use this yet (I don’t actually know how to ‘use’ it or what to do with it to be honest).
I’m going to see him at home today to talk to him about how to help him. He has discussed before that he doesn’t want to go into a home and will not leave his house. But I’m getting all kinds of distressed phone calls from him when I’m at work, asking me to get to him ASAP because of various emergencies. When I get there, nothing is wrong and he says that he didn’t say to come then and there, just when I could, because eg his toilet seat is broken or he’s worried about a fence panel in his garden.
This can’t continue, my job doesn’t really allow me to do this easily. I think he just wants company. I do get up and see him as frequently as possible. I call him on the days that I can’t.
I think he needs to go into a home but I just don’t know how to do it. I don’t know who to contact. I’ve tried contacting his GP to ask if he has a social worker (he tells me he does but I can’t see any paperwork at his house regarding it) but they’ve not got back to me. He’s been assessed a few times by the memory clinic and they called me and left a message, when I called back they were closed…
Just feeling like I’ve got the weight of the world on my shoulders and I have no idea where to turn or how to get help for him.
Any advice? He’s also currently going through an awful process of a divorce which isn’t helping, he knows what’s going on and his solicitors are keeping us both informed of each step but I know this is causing additional stress.
I’ve never had to negotiate my way through anything like this, sorry if my post is rambly and nonsensical but I’d be grateful if anyone could help Flowers

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AnImposter · 25/09/2021 09:12

I'd think not managing his medications especially for an acute chest condition would be a safeguarding risk... you should have a local number for social care direct to do an adult safeguarding referral and get things moving with social workers xx

TheChosenTwo · 25/09/2021 09:41

I went over to see him last night after work and his chest is sounding a lot better after some more days of the steroids but he’s certainly not managing his medication properly. I bought one of those pill boxes for him with 4 slots per day but he didn’t want me to start decanting the tablets into is as he says sometimes he doesn’t need eg his sleeping tablet and wouldn’t know which one it was in the box. I’m not sure he’s taking his thyroid medication properly either and there are just random half open boxes of all his different tablets strewn about the place.

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TheChosenTwo · 25/09/2021 09:43

I’ll have to do an online search for what’s local to him, he’s an hour away from me and so I don’t know what’s considered local in terms of care teams etc. Thank you though, I’ll see what I can find out.

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Purplewithred · 25/09/2021 09:49

Oh dear, this really is difficult. Key to me is to remember it's the illness doing lots of these things, not him, and your job is to look after the essential him not to pander to the illness.

Here are the things I personally feel are most important for you at the moment

  • there is no easy smooth solution to this, for most people caring for their parent with Alzheimers an hour away it's a case of focusing on what really matters and not sweating the small stuff. In particular grab all the help you can get the minute it's on offer; delegate everything you possibly can. Be prepared for things to change/go wrong/get messy but do take up all offers even if you think they might not work.
  • you are now the grownup. Do not muddle your dad's wants with his needs. Lots of people say "I dont want to go into a home/move out of my home town/have strangers in to care for me" but they say it at a time when they don't know how much of a burden this is going to place on their loved ones. If he was in his right mind your dad would not want you to sacrifice your family life to look after him, and he would be grateful you are protecting him. Remember that. Be prepared to be tough.
  • work on establishing full control of his finances and his medical affairs. He no longer has capacity to keep himself safe and to make informed choices. If he accuses you of stealing remember it's the illness talking, not him.

Register as his carer with the GP if you haven't already, and join the local carer support group (there will be a council-sponsored organisation called something like Action for Carers). There will be some kind of Dementia service locally too, call his borough council or county council to find out who; or Dementia Connect can be a good way in. He may well have something like a Dementia Navigator assigned to him (ask the memory clinic). You will find your way to a local network of people who can help signpost you to help and services and act as a brilliant source of information and empathy.

I'm so sorry, however well you delegate this is going to involve work for you.

TheChosenTwo · 25/09/2021 10:45

Thank you so much for the advice and the advice and kind words from everyone on this thread actually, it’s so helpful to read.
It’s my grandad, he’s not my dad!
He has a really old friend (old as in he’s known him since he was a child) who lives close by and I’ve been there a few times when the friend has been there visiting him. He also has a few people who used to work for the local age concern who pop in and a neighbour who sometimes drops him off dinners which is all so appreciated. We bring him down here as much as we can for Sunday roasts and sometimes a midweek meal but it’s not always easy, we have 3dc and both work full time so it’s often a case of juggling. Well, always really, not just often!
He can cook for himself but the combinations are weird and his kitchen area isn’t always the most hygienic so if he won’t let me clean up the next best thing is for him doing as little cooking as possible in there.
Memory clinic and gp are just not responding to me: I have tried calling in my lunch hours and after work but there’s either no response, they close at lunch or I’ve left messages (messages with the memory clinic). It’s like wading through treacle.
I have found a fairly local dementia service and sent an email and left a voice message.
Thank you Flowers

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MereDintofPandiculation · 25/09/2021 11:44

I wonder if he just doesn’t think he’s ever told me before even when he said it to me 40 seconds ago. Yes, this, precisely. I tell people things, then halfway through have a memory of telling this person the same thing, so I stop and apologise. He won't be getting even that memory.

He gets really sad about his childhood, it’s sad hearing him talking about and it upsetting himself and he does it over and over again. That's sad. Can you keep a stock of happier memories that you can bump him into? (Sorry, I'm back into the glitched record analogy, were you nudge the needle very slightly and it slips into a different groove)

I used to write things in big letters on the top of Dad's paperwork "No action needed, can be thrown away" "to be filed" "paid by cheque on "

Yes, he'll tell you not to bother with the housework because your doing it implies he's not up to it. I used to say to Dad that I know he can do it himself but this is just to give him a day off.

Probably it's more hygienic for him to cook than to prepare cold food Grin

Have you got PoA for Health and Welfare? Have you sent it to the GP? It must be difficult now, I was at the same GP as my father, so I made an appointment with a GP to talk about him. But now they have that on-line triage in place and it's difficult enough getting any sort of response for your own illnesses. Emphasise the drugs/safeguarding.

It is possible to get the drugs dispensed in a dosette box from the pharmacist, all neatly divided into days and time of day. If you could get that set up, it might be easier to sell it to him "Grandad, they've changed the way they're packaging drugs, they're doing it this way now".

Main thing GP and memory clinic will give you is a diagnosis. You might be better off tackling the symptoms - social services are the people to tap into, though they're just as pressured. Understate what you're able to do (anything you say you can do you'll be left to do 365 days a year, holidays and illness notwithstanding).

TheChosenTwo · 25/09/2021 12:02

Yes I have taken to fast forwarding through his life’s story and getting him to the part where he was a success in his job, it doesn’t take him long though before he gets to the part where he’s proud of it because of his childhood Confused
I do have PoA for health and welfare yes, it’s been scanned in (or copied, i dont know which) at his doctors but I still can’t get anyone to call me back.
Their system is entirely fury inducing and they make me want to cry every time I phone and wait in a queue and wait in another queue and get nowhere.
I didn’t know the pharmacy would do that with his medication, this might be really helpful for his crucial daily medication, he uses the pharmacy at his nearest tescos. I’ll speak to them tomorrow when I go in. Thanks for mentioning that.
In all honestly I’m just not able to do much,
I’m drowning under stress and responsibility at home as it is and it’s taking its toll travelling at the end of the working day and either leaving the dc to their own devices until dh gets home or going up after he’s home. And I work term time in school so I just can’t do anything in terms of making and answering phone calls on a whim. Last week I spent 2 entire lunch hours on the phone in queues Sad

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