Dementia dad doesn't reminisce or anything. Just asks repetitive questions about who's in the house of if windows are shut

[Dementiadaughternumber2]

Just wondering if anyone has this. My father has had a really full life. Outingly full with what he's done, who he's met and what he's seen. So he was always very driven and focused but since the dementia kicked in (a few years ago now) he's lost everything. We never get the "do you remember when" or (if music is playing) "this song reminds me of x time". We never get any joy or smiles from him or are able to distract him with anything. A newspaper? He puts it down and asks who's in the house, what you are doing, where you are going later or if such and such an item is yours or his. A TV program? Same. The mind puzzles he used to enjoy? Same. Even the sport he used to play internationally? Same. If you are having a conversation with someone else he'll just cut across with the same three of four questions and badger you with "you aren't talking to me", "why aren't you answering" or even increasingly "be quiet and answer my question".

I don't know what I am asking really but it's just getting harder and harder to not feel extremely frustrated and tired with it all. Any guidance?

With DM I've always said she has the rubbish dementia. She's not focused or living in the past and she's not reacting to music or people in the present as you'd hope. She's just not there.

It's all phases. We had the repetitive questions, the hyper focus on a conceived change. For us the notable one was the dentist calling to change her appointment. She asked about it constantly and once DF was out and she phoned him multiple times to ask about it. This was around diagnosis time. Now 8 years on she says very few words and is in a care home.

It's all phases, it's all different stages of grief. It's exhausting, heartbreaking and at times too big to comprehend. I don't know how we got through it but I was relieved when DF realised he couldn't manage care at home anymore as at least then I felt like I got my DF back.

No harm in giving him the bank card and wine surely. I've told my dc that if I want a drink or cigarette when I get dementia to let me have it.

I found the anxiety phase did give way to a less bothered one. But no relaxation into old memories as you were expecting. More, getting stuck in certain moments of the past. It's quite an anxious condition in my experience.

I’m so sorry to read your latest post, OP. I really do understand. My mum used to think she was going out to work every day when she was 93. It really did break my heart every time I saw or spoke to her at that time. And I found one of the worst things was thst I felt SO helpless, and I got so little support from anyone until she developed more serious medical problems and was hospitalised, when she couldn’t mask the dementia symptoms and people really did realise how bad she had got.

If he’s worrying about his job, was there ever any paperwork he had to do? My
mum had a phase of fretting about it, and just some worksheets printed out and written on for her to ‘mark’ made her happy.

Catching what engages in any phase helps - if you can.
My Mum also had dementia but cancer finished her off. The cancer also speeded up part of the vascular damage so we had a couple of crazy months of frequent changes. But she had always loved sorting things out and folding linens. Which had also been something she did at work. So I found offering her a pile of tea towels or pillow cases to fold. Washing to fold/hang out ( it got brought back in again 10 minutes later, and repeat) or just random things to sort - buttons, sewing kits, small toys, anything really, and it might keep her engaged in what felt purposeful for a while.
I think there's often a sense that there's something they should be doing but can't remember what that drives a lot of people. My Mums dog got walked a lot while she was still safe to go out alone as that was her default thing to do.
My MIL did give way to a more peaceful sense of inertia once the dementia progressed.

Your poor mum. It must be heartbreaking watching her so distressed. Are there no benzos or other drugs that would give her at least enough of a break to watch some tv etc? Or are the doctors reluctant to prescribe what are essentially tranquilisers?

I agree with this. You and all relatives who very much have a full life to live deserve to live and enjoy it. The plans exist for a reason.

My aunt was similar, although not all day. We could distract her with food and photos - and particularly with watching the squirrels in the garden. It's so sad to see someone desperately trying to keep control of who and where they are, as everything slips away from them.

We bought her an A5 notebook and tied a pen to it. We wrote reassuring answers in there:

Hi Dad. This notebook is to help you remember things. You are at home at 5, Acacia Avenue. Daisy, your wife is here too. (If you can't see her, she has popped upstairs for 5 minutes to use the loo.)
Your daughter, Sally, visits most days then she goes home to see her husband Fred.

We could often see her reading it with great concentration, trying to remember it. I hope it gave her some comfort. It certainly enabled us to feel less stressed at the questions, as we could answer - Oh I wrote that down for you, in your book. Here you are. . . And it was useful when we had to do something different. It definitely reduced anxiety then:

June 25, Tuesday. At 1pm we are leaving the house to visit the dentist to have our teeth cleaned. Sally will drive us there. We will be home at 5:Acacia Avenue in time for tea.

Hth

These stories are heartbreaking to read.
I am so sorry for all of you..

It makes me angry though that we wouldn't let a dog suffer like this yet humans just have to drag on and on suffering. There should be a way of putting an end to it.

The most common reason is because they have a drink and become an aggressive and violent drunk.

It's truly hideous, I'm sorry. My mil asked the same half a dozen questions over and over and she would just randomly cry. It was so sad. Nothing made her feel calm or at peace even for a second.

We used to make fil leave the house for a coffee, him being there didn't actually reduce her distress and he so desperately needed a break. And it felt like the only positive thing we could do for either of them

Can you contact adult social care and ask for a care needs assessment for your dad, or if he is unwilling to have this, would your mum accept a carers assessment? My dad (undiagnosed - currently being assessed - but very obviously declining and was essentially keeping my mum prisoner) refused a care needs assessment, but mum had a carers assessment which forced the issue and now she gets some respite for a few hours one day a week which has made a big difference to her.

This sounds very upsetting and frustrating. If he tends to be in once place, can you have a whiteboard near him with an answer to all/at least some of the questions? So you can just say - 'Look at the board Dad?'

Just thinking about this as my step-grandma's daughter did this when SG started asking repeated questions every time one of them phoned the other, I only knew about this because I went over to SG's house and there was a whiteboard by the phone saying something like 'You are not moving house, no one in the family is moving house' as clearly she'd been asking this repeatedly. I don't know if it helped, to be honest, but it could be worth a try.

The problem with the cigarettes is that people with dementia forget how to use them and are really likely to start a fire, and burning to death is really not ok no matter how much we long for our loved ones to be at peace.

He's an ex alcoholic

As I say @inigomontoyahwillcox mum can get the care, she just won’t. We know where he’s going. It will be like a five star hotel with all the care he needs but mum just doesn’t think he’s there yet and as broken as he is I can’t bear thinking of leaving him behind. He’ll just rage with anguish at being away. It’s horrible.

Sorry - I missed your post about her not wanting the support. It's so hard when there is little you can do to address the situation - I'm really only at the beginning if it and am already finding it hard.

Also other addicts latch on to people with impairments and access to their bank cards and exploit them in all sorts of horrible ways.

Im not denying that we all sometimes wonder why we are stopping people from doing X or Y but it’s not as simple as all that.

She's on antidepressants which haven't touched the sides. And yes they are reluctant to prescribe anything more addictive. Though God knows why anyone would be nervous about her becoming addicted in her state.

Constant questions is a common presentation, unfortunately.

There's a widespread narrative that people with dementia lose memories in reverse order and keep the oldest ones longest. That's not entirely untrue for some types, but when that happens it generally doesn't mean reminiscence. In the early stages of cognitive decline things like memory boxes can work, but once it's properly set in it is more that the past has become the present (or at least their only tool for trying to make sense of the present), so they might think they need to go to work, or go home because their long-dead mum will be worried. But they won't be interested in - or understand the concept of - reminiscing about those things any more than you'd want to reminisce about what you are doing right now.

But the question problem is not really because memory of the recent past has gone, it's because working memory has gone. The little 1-minute and 5-minute loops where your brain stores 'what I'm doing now' before transferring the information to 'what I did earlier'. There may or may not be a past (usually not), but there's also not really a 'now' that they can get hold of. The memory of asking the question is retained only enough to know that they're waiting for an answer; and as soon as they've heard the answer both it and the memory of having asked are gone again.

And that lack of working memory also means anything like a newspaper or TV programme simply makes no sense.

There's no solution really. It's a desperately hard thing to cope with.

Some people say that if you leave a move to residential care as late as possible, it can be harder for the dementia sufferer to settle in, find their way around etc.

Does the home have day activities open to non-residents which your dad could attend? If not, might it help if he went into the home for respite care or a "holiday" and see if he settles in?

My grandmother was very reluctant to go into a care home, but it helped that she'd already attended day activities at the home and enjoyed them. Once she had moved and settled in, she was much calmer and happier. She was no longer struggling to cope in a confusing world where things kept going wrong and her possessions kept disappearing. And she was no longer angry and paranoid that her neighbours were "stealing from her".

I really feel for you @Dementiadaughternumber2.

Do you think that havibg his medication reviewed might help? If you have LPA you could talk to his GP. My DMIL had Vascular Dementia and it took a while to get her the right medication to ease her anxiety.

I would suggest talking to your DM away from your DF too. Sadly becoming the sole carer 24/7 isn’t sustainable for most people long term. If your DM wants to keep him at home for as long as possible the best thing she can do is to start sharing the load. Do you have someone who can sit with your DF or take him out for a short drive whilst you talk to your DM?

Do they already have things like a gardener and a cleaner?

Get Social Services in & see if his meds (if any) are appropriate.

We waited for Fil to make the decision about Mil. He's happier now she's in a carehome & he was devoted to caring for her. It was too much tho.

Just wanted to add that the not joining in conversation or interrupting yours could be because he can no longer follow a conversation? It must be very frustrating of people are talking around you and you can’t understand what’s going on? He might be feeling frustrated, understandably so

Have you read the book Contented Dementia? I don’t know if that will have any suggestions to help?