Can you just tell me how much you discuss Alzheimer's/dementia with parents?

[RememberBeKindWithKaren]

My mum was diagnosed a couple of months.back..They recommend she start a medication ( only one type possible due to her heart condition)..But my mum is in denial so we haven't done anything yet. I feel awful when I consider talking to her about it because she always says she has a fantastic memory..and to be honest she does still have a fantastic long term memory..just no good for things that happen in the morning, that kind of thing.

Yesterday I realise she was showing signs of sundowning...Do you just live with these things and not refer to dementia? Presumably there's little to gain.

One of my friends is a doctor and she tells me that we must get my mum on a waiting list for a home.. I know my mum will refuse it..She believes she is coping but it is really hard on my brother and me, even with carers twice a day.

Any comments, thoughts would be welcome..

What happened when the consultant told your mum she had dementia? My mum knew there were things going wrong but was adamant it had only been for about the last 6 months, in reality it had been about 6 years.

My mum (71) got officially diagnosed this January and is now in a home. She'd had it for years but me and my sister were just about managing. Then she had a medical episode requiring a hospital admission and we made the decision then that she couldn't go back home.

We said it was temporary whilst she recovered, she didn't need to take up a hospital bed, but she needed more help than we could give (she couldn't be left alone overnight because of hallucinations).

After a few weeks she couldn't even remember what her flat looked like and said she had accepted she wasn't going home. Fortunately her care home is lovely, not without issues but the staff are wonderful. She won't eat their food (it's pretty grim) so we supply ready meals for her evening meal and we also do her laundry - she actually helps me do it at my house every weekend. She always likes to be busy so she helps in the home laying the tables for meals and folding laundry every day. She's not one to sit in a chair all day watching TV.

Dementia isn't a drop-off-a-cliff illness, it's a really slow decline, with some sharper drops along the way.

The book Contented Dementia is great. There's a lovely letter at the start to the person with dementia basically saying trust the people you love to do the right thing for you whilst you just get on with living each day. Don't worry about the future. 💐

The phrase about putting your own oxygen mask in first is so true. Now I see mum 3 times a week, and it's good quality time. We go for coffee and cake, wander to the shops, or I do a nice Sunday roast and she spends the day here. What's different is I don't have the constant dread of a phone call with another disaster that needs sorting (flat flooded/lost purse and phone), I know she's having her medication and is eating 3 meals a day. She's wearing clean clothes and is showering. None of those things were happening whilst she was living alone.

She should take the medication. It won't do any harm and if she is developing dementia it will slow the progression of the disease, giving her more time to make the most of. It's very hard to come to terms with, my DM was diagnosed about 74 and was devastated.

@FatLarrysBanned thanks for your post. Sounds like you and your sister have sort of managed to get your mum in a good place now. Yes, knowing she's surrounded by nice staff must be a big relief.

We're just about coping in one sense with my mum living by herself, but I should really be giving the future more thought probably. She seems to be keeping herself clean, I think, carers are helping to feed her and my brother and I will between us see her nearly every day of the week. Have a feeling this winter will bring a lot of big issues and challenges.

I did mention the business of medication today ( without mentioning dementia), and I think she will go along with the plan. Not sure really how much of the focus should be on the dementia as a doctor said that given her heart condition, we're looking at perhaps about 18 months. So maybe we don't need to get too het up with the dementia. I just don't know.

@NotMeNoNo thanks, I'm going to do some more research on this medication. But I can't see why she shouldn't give it a try out.

I hope your mum stays well.

Thanks and I hope you and your mum find a way to progress too. The Alzheimer's Society Dementia forum and resources are super helpful.

My relative didn't understand or remember the diagnosis so didn't get upset about it and had already needed help for some time with medication (putting it in a pill box) so we were able to just add it without any issues.

She fairly regularly talked about her brain not working right and we would reply that she's having memory problems which is why everything is confusing but that she was doing very well.

She wanted to go into a home in the end and has been reasonably settled there although her physical fitness declined.

So the doctor thinks your probably only has 18 months left, due to the heart condition? In which case I would not focus on the dementia or the medication. My mother had Alzheimers (for ten long years) and was offered medication but due to concerns about her blood pressure it kept being put off, and then never appeared. It is unlikely it would have helped anyway.

My mother's pharmacist said that refusing medication is a common facet of dementia. My mother gradually refused to take anything at all other than paracetamol for pain relief. There was no point trying to force it.

Re a care home, I would not mention this to your mother. But there is nothing to stop you and your brother going to view care homes so you have in mind the one you want when the moment arrives. I told my mother she was going for a mini break in a hotel and she went along with that.

Do you have POA, and is she self funding for her care, or are you relying on Social Services? It is far easier to deal with if she is self funding as you have many options available, rather than the option chosen by SS.

I was going to post but @catofglory has said it all.

The only other thing I would unfortunately say is that many doctors are appalling at judging prognosis - though tbf GPs are better than hospital doctors and hospital geriatricians are better than other specialists. A surgeon told me my mum would be dead in six months. That was 4 years ago. I’d still say that as far as your mum goes, live in the present, but plan for the future as per cat’s post.

Thanks @PermanentTemporary ..so just to be sure I follow you, you're saying that it would be a good thing if I could get her agreement to start with the new dementia meds ?

I'm not sure why I see this as a particularly difficult step, in that the Adult Mental Health lady will go ahead with the prescription as soon as she hears from me, without even needing any direct agreement from my mum. But I have to think there are good benefits from her starting to take it..

Thanks to everyone who is replying.

Just an update about the possible dementia meditation. Not sure if I said above. Besides her heart condition ( stenosis) the dementia nurse who came out said that the thing with these meds is it can cause wobbliness ( technical term). So I told the nurse that wouldn't be much of a problem as we were getting mum a falls pendant.

I now realise she's scared of the falls pendant because she sets it off by accident and the voice that comes on is quite loud. So she's given up wearing it. Which means if she takes the meds there's an increased risk of a fall.

@catofglory many thanks for this. A lot to unpack.

Yes I have both POAs, both activated, I think that is the correct term. Yes she would be self funding. One smallish thing - my brother is a vulnerable adult, not hugely with it, so I will be the one taking any decisions really.

Do you think all good care homes have waiting lists please? Presumably it varies. Should we be trying to get her flat in a saleable condition? Nothing major needed but a fair amount of decorating etc would help.

Now that she's had the dementia diagnosis, do we need to look for homes that specifically cater for this or is that the norm for all/most customers?

She is adamant that she does doesn't want to go into a home but I know this winter is.going to be difficult as she cannot stop meddling with the radiators and is constantly too hot or not hot enough. Everything seems harder in the winter. In summer, her situation somehow less of a problem.

Care homes do vary and so do areas. The other problem is that they change… my mums first home was one that a friend had really liked when her mum was there (it was still very Covidy then so visiting was hard) but for my mum it was an absolute hellhole. So from my perspective I would wait to look at them.

Do you think she would agree to you having remote access to the heating via an app so that even if she switches it off, you can turn it back on again, while removing controls from the radiators? Maybe talk to a couple of heating firms. Tbh there’s a market for a heating system with fake controls…

The falls pendant would not not stop falling anyway, just alert someone she had already fallen. A fall could be a huge and disabling event. I personally would not give a parent with dementia anything which causes 'wobbliness'.

I would not fret about the medication. Get it, see if she'll take it. If she won't, she won't. And don't worry about selling her home yet, unless you actually need it to pay the fees.

Great that you have POA, and she is self funding, so you are all set up. IME care homes do not necessarily have a waiting list beyond a couple of weeks. My mother and MIL both moved to their chosen care homes within a month of viewing. Do a bit of online research and then call a few to enquire, and go to view.

You do need a dedicated dementia care home. The manager will assess her and tell you if they can meet her needs. Don't choose on the basis of fancy facilities, your mother won't need them. My mother's care home was homely but the care was superb.

I used https://www.carehome.co.uk/
and filtered by location and type (dementia).

Yes, look for a home that caters for dementia - my relatives residential home was okay with someone delightfully dotty, but they made it clear that you’d be asked to leave if the dementia became shouting/aggression/wandering etc. basically any behaviour that disturbed life for the other residents.

MIL was diagnosed a few months ago and prescribed memantine and tbh it really badly affects her. She is very bonuses and muddled for several hours afterwards. She has accepted her diagnosis though.

Hi Funny, this is the same meds they are suggesting for my mum. I'm sorry you're not finding it helpful for your mum. How long has she been taking it if I can ask you please?

The more I think about it the less sure I am.

Oh is it memantine? That is what was suggested for my mother, but the docs kept putting it off, and in the end it wasn't given. I had heard of other people having side effects from it, so I was not sorry.

My DM was told by her GP that she had Alzheimer’s, and apparently accepted it, but had forgotten by the time she got home maybe 15 minutes later. If we tried to remind her she just got angry/upset, so we soon stopped.

IMO it’s not really ‘denial’ as such - more a case of being unable to remember at any given moment that they can never remember anything - if that makes sense. My Dm still honestly thought there was nothing wrong with her when she could no longer even make herself a cup of tea. Because all the memories that were left to her were from way back, when of course she could do such things.

is it rivastigmine? I know someone who took that medication via a patch, might be easier for your mum to commit to?