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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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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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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 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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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 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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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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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 09:07

@MereDintofPandiculation yes I have been hearing the same family stories for about 3 years now Grin
He’s like a glitched record, I wonder if he just doesn’t think he’s ever told me before even when he said it to me 40 seconds ago.
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.
It’s painful to see him like this.
He doesn’t want me doing any housework, he follows me around and tells me to sit down and then shows me paperwork which is all old, I’ve encouraged him to maybe ‘file’ some of the old (years old) paperwork because he gets confused by it but he doesn’t want to. The housework is in dire need but he just keeps telling me not to bother.
It’s tiresome!

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helpfulperson · 25/09/2021 08:21

The alzheimer's society are good for advice and for knowing what help is available. It's hard if he doesn't want help but there are options such as day centres etc which may appeal more to him and provide company.

GoodnightGrandma · 25/09/2021 08:02

You need to get back onto SS as him refusing carers is a red flag.
You will probably end up going through the legal Avenue of having him forced into care eventually.
I tell you this as a warning - the more you do, the more they will expect you to do. To get him into a home you have to pull away and let him fail. Only then will SS step up.

MereDintofPandiculation · 25/09/2021 07:58

He doesn’t seem able to retain any information that I talk to him about, he just starts talking about things that happens 50/60/70 years ago, repeating stories on a loop. Quite normal! Start developing an interest in family history Grin. Anything you need him to remember back it up in writing - calendar in prominent place (easier if he's always used a calendar, otherwise he'll forget he has one), notes stuck in prominent places. Big clear writing - eyesight gets less discriminatory. Anything less important (a relative has got married, another one has had a baby, one of your DC has won an award) just get used to telling him over and over again. Find ways to cope with the tedium of repeating stories - when my father was at home, I was always doing housework for him which occupied half my mind, in the nursing home I do crochet.

RoseMartha · 24/09/2021 23:11

When my parents were diagnosed they were given a SW straight away.

The Adult Social Care should be able to tell you who that is.

TheChosenTwo · 24/09/2021 22:38

I’m in England.
I can’t get hold of his GP still, it’s a total nightmare. Now I’m not sure why I’m so adamant on getting hold of his GP, it seemed so important now but I’ve lost sight of why Confused

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Toolateplanting · 22/09/2021 13:53

He won’t have an allocated social worker. They are assigned just for specific assessments and interventions. You need to contact duty older adults team /safeguarding / adult support and protection with your concerns. Are u in Scotland or England?

TheChosenTwo · 22/09/2021 11:36

Thank you everyone.
I have called and left several messages for his GP and he has not got back to me. I’ve registered with all his banks (that I know of) but now need to request card access to his accounts so I can start paying some bills (separate legal issue ongoing and the solicitor needs paying). Initially I refused access to the accounts as I didn’t want him to think I was interfering but I know I need to now.
He doesn’t seem able to retain any information that I talk to him about, he just starts talking about things that happens 50/60/70 years ago, repeating stories on a loop.
He used to go to his local branch of Age Concern which was brilliant; they were great people there but they’ve closed down now and he can’t get to the next nearest one.
It’s all so bloody hard.
He’s over an hour away from me so I’m running myself ragged up and down there after work and between sorting out my 3dc.
Other than his GP who else might Be able to tell me if he has a social worker?

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RoseMartha · 22/09/2021 10:04

Call adult social care and age uk

Adult social care might be able to point you in the direction of a day centre which focuses on dementia . It would be good for your dad to attend one

MereDintofPandiculation · 22/09/2021 09:15

Refusing care is very common. Social Services are used to it - they won’t hold it against your Dad. That’s something really good about them - they’ve seen it all, take it all as normal. Very reassuring when you’re facing something quite outside your experience and totally bizarre.

Toolateplanting · 22/09/2021 07:26

Hi op
Sounds like it’s time to step up and take on some of the powers he invested in you when he gave u POa. He’s at risk of financial exploitation and I would wonder whether he is managing medication, meals, shopping etc.
Time for a direct conversation with him. If he doesn’t seem to be taking it in / able to act to keep himself safe you need to do this. Boundaries and support with his finances now as this will only get harder.
Alzheimer’s Uk have a helpline which is good.
Re Social work - a referral to safeguarding/adult support and protection (google that and his local council) spelling out the risk you believe he is at. Their first advice will be as above posters have said to use your poa powers to support him more with finances. They will also discuss his care needs, how he is managing health wise and will give advise kn how to access homecare.
I would also call the GP and request a discussion re his health, capacity etc. Good luck.

TheChosenTwo · 19/09/2021 22:22

Yes, I have registered the POA with all the banks I can think of that he has accounts with.
He was deemed to just about have capacity at the last assessment which was a year and a half ago but he has declined quite sharply since. It was very close.
I can’t track down a social worker.
He had a nurse visit him the other day when dh was there with him, she was there to listen to his chest as he’s been really wheezy for about 6 weeks now, it sounds awful and he’s been given some steroids which he forgets to take so it’s not getting better. Dh mentioned to her that he didn’t seem to be coping well on his own now and she said she’d speak to social services. But last time they organised carers for him and then he sent them packing. I don’t know if they’ll try again to be honest. They must do as they must have a duty of care but at the same time, if someone refuses help…
Arghhhh! I wish he lived closer Confused
Thanks @thesandwich Cake

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thesandwich · 19/09/2021 15:55

So sorry op. Not much advice, but lots of sympathy.
Have you registered POA with the banks? Some have departments dealing with POA/ elderlies. Sounds like it might be worth contacting them if instructions are not being followed. Is he deemed to have capacity? Might be worth contacting sw about that.
🌺🌺🌺🌺

TheChosenTwo · 19/09/2021 15:33

And another thank you @DominicRaabsTravelAgent, I’ll call the angels and see if they can help too.
I didn’t know they existed so I appreciate you sharing this resource Flowers
I’m feeling so down and overwhelmed with it all that I’ve actually ordered myself a massive bouquet of flowers to come tomorrow!

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TheChosenTwo · 19/09/2021 15:29

Thanks for moving this HQ Flowers

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TheChosenTwo · 19/09/2021 13:01

Thanks @DominicRaabsTravelAgent I’ve just asked them to move it.
I didn’t realise there were an elderly parents topic, I thought this would be the best place to post Grin

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DominicRaabsTravelAgent · 19/09/2021 08:26

I'm really not sure what to advise. Your DGF obviously gave you POA because he wanted you to make the decisions to keep him safe should he no longer be able to make those decisions abs it sounds like he hasn't been able to for a while now.

I don't really have much experience. Id ask @MNHQ to move your thread over to the Elderly Parents Section. It's a bit busier in that section and they are some lovely MNers with lots of experience of Dementia.

I'd also speak to an Admiral Nurse. They are open 9am to 5pm today Thanks

TheChosenTwo · 18/09/2021 17:12

Sorry, at the beginning I said I didn’t want to get involved in his finances but didn’t say that it’s because I don’t want him to start accusing me of robbing him too.

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