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?

Sadly lots of us understand. It is frustrating and tiring and so darned hard.

When you think that today is the best he's going to be it is very depressing.

My advice is to be in the moment with him, the past is lost to him.

Have you carers organised?

There is no present either though. There is nothing beyond those questions.

They could afford care but DM basically refuses as he only wants to be with her. If he can’t see her he asks where is. Constantly. So she feels she just has to be there.

Every single sufferer’s dementia is different, so it is pointless to become frustrated because your father’s decline doesn’t marry with your imagined ideal of how the condition might be presented.

Yes we have this all the time with mum. Questions
Is this my house, husband, daughter? Where will I sleep, eat, live?
What day is it? Do I have to go to church, hospital, doctor?
And she is SO agitated and crying, panicking over these things. Her mind never gives her a moments rest and no drugs have helped. She does this on repeat for every waking hour. Its absolutely rubbish.

Ideal at how it might be presented?! Behave.

@Notmymarmosets thats exactly it.

At some point your mum will be burnt out by the non stop caring role, and the family and her will need to think about balancing what he wants (only mum) and what she needs (respite and support)

It is very hard.

What are you even talking about? Of course it’s frustrating, and I say that as a carer. My main client is an ex alcoholic who has recently had to have his bank card removed from him. I take care of him 4 and a half hours a day, and the entire time he is nagging and nagging for a bottle of red wine or his bank card. You can have all the patience in the world but it’s TEDIOUS.
Full sympathy op, it can’t be helped, and I haven’t found a way of getting any of my dementia clients to redirect their focus. They get their fixation and that’s it

When you think that today is the best he's going to be it is very depressing.

I don't think like that. Yes, it's a degenerative disease, but the people I've known with dementia have gone through phases. An angry, anxious or paranoid phase might give way to a more contented one.

Sorry to hear you are going through this.

There's nothing you can do really.
Just remain calm and patient. Answer his questions (yes, a thousand times). Don't get frustrated, and don't make comments like "you already asked that", as that can cause embarrassment and more frustration.

Continue gently trying to distract, it doesn't sound like it works much for your dad, but even if you get a few moments of distraction, then that's a win. Reassuring touch is often good, does he settle a bit with that? Handholding, hand massage, back rub etc?

Also is there a 'theme' behind his questions? Is he worried about you/his house etc? Does reassurance work? That you are ok and happy and healthy, mum is healthy, house is his, he is safe, mum is safe, etc.

And if you can't tolerate it, it's best to make visits shorter, if you want. Don't feel bad either... answering the same 4 questions over and over gets very old very quickly! Shorter, more frequent visits might be better.

OK.

This is a support thread @Sesquipedahlia

My mums from of dementia was exactly the same , the questions would often be repeated before you had even fully answered, it was a phase that passed though- took a long few years.

My father became very anxious and paranoid, thinking someone was going to break in, steal his money or the dog and, as he couldn’t quite remember who different family members were would keep asking about who they were to try and reassure himself.

it was difficult and frustrating having the same conversations over and over but sometimes I managed to reassure him and take the worry off him for a while so he could relax a bit.

It’s a horrible journey to be on, take care of yourself too.

Sometimes this is how it is. My mum can currently focus for around 3 minutes before she can't remember who people are or where she is. But, she lives in a care home so we don't bear the stress of the behaviours that go with dementia in her case. The decision you'll need to make is whether you dad can continue to be cared for at home or whether your mum is risking carer breakdown in believing that she is the only one to be available to him. Living with dementia is very much about living in the moment, there is no past, present or future there is just 'now' and whatever that 'now' looks like, which will change as the dementia progresses.

Sympathy, my dad got very annoyed with attempts to look at old photos and so on - 'why are you showing me those old things!'.
It's hard, but you have to try to just engage with what's coming at you.

Eventually things will get too much for your mum and you'll all need to have a plan in mind for when the crisis comes. Our mum became frail physically herself and got frightened of his unpredictability and rages.

It's very hard 💐

@wandawaves Nothing distracts him. If he's on his subject of windows being closed, doors being locked, who's where, or who's got which children he's not interested. If you try and change the subject he responds with "why aren't you answering me". And even then trying to reassure doesn't work. You can even tell him everything's sorted and he will still check whatever it is.

There is a theoretical plan in place where he can't live at home anymore and we know where he would go. It's just really hard for mum to push the button as she feels he took care of her for so many years in such a way as he did that it would be giving up and I don't know if he's quite there yet. But it's just the fact that there's no peace for him, or anyone else.

In my experience - you don't need to be that concerned with an accurate answer to any questions.
My MIL would repeatedly ask if she was going home today (was in a care home) and we would always reply, not today. Sometimes with a reason - we can't take you today because we're going out this afternoon. Her 'home' was sold and she was never going home, but she didn't need to hear that, not would she have remembered.
The question is just in the moment. The answers don't stick. The person just needs an appropriate and reassuring response.
Papers etc are of no interest anymore, he may not be able to read or hold onto the thread of what he's reading for the duration of the sentence.
It's a very one sided conversation but we would go prepared with some NB red, photos or objects/snacks and that was enough.
All day every day must be especially hard.

If there is a plan in place then the time is now. This is going to sound harsh, but dementia never gets better, it doesn't go away, it just changes and gets even worse. Unless all of you can reliably answer exactly what he's saying every single time without feeling like you are sinking into a deep hole, literally answering his questions about the windows every time with 'the windows are closed' no emotion , no feelings, absolute fact, like it's the first time hes ever uttered that sentence (which in his world, it is the first and only time he's said anything, hence the frustration) then the time is now because the dementia has a complete grip and it's not going to get better.

We are going through this with my dad. He only wants to be at home and wants my mum there 24/7. She is tired. He went to a day centre twice but last time refused to go and became aggressive. He wants to be at home with my mum or with us but preferably with my mum. He is constantly anxious if we take him out, worries that he hasn't got what he needs. He cant understand what's going on, cant follow a conversation , cant follow simple instructions like put your coat on. We are lucky there are flashes of him and he still has a sense of humour- in a very slapstick way. He will laugh at a bird hopping or a child jumping in a puddle. He loves children but in public this is often met with suspicion. He is confused about where to go to the toilet or what to use to wipe himself. He has been caught trying to wee in the kitchen bin and has wiped himself with a towel. I feel like I have lost most of him but then I see a flash of him and feel guilty for grieving what we have already lost. And then there is my poor mum, desparate for a break and some relief but frightened of loosing him at the same time. I tell myself it is only so hard because he was such a good dad and grandad. The grandchildren are great with him - slapstick humour with no words works between them because that is how he always was with them.. I feel angry that it has happened to him whilst my inlaws who are not the good person he was are fit and well in their 90s. Then I feel thankful that he has had a good life but frightened for him and what the future will bring. I hope that he just wont wake up before he gets to a point where he is humiliated by personal care then I feel guilty for wishing him away. Then I remember he has already gone.

My mum had fronto temporal dementia, and I found it really annoying when people would say things like 'show them old photos, it'll all come back' or 'everyone with dementia loves music, they'll sing along' as these did absolutely nothing for her. For a while she would watch TV, but absolutely nothing like she liked before - only things very much in the moment like Only Fools and Horses (she hated it before) and music for a while she'd watch Andre Rieu dvds with dad (again, previously despised. She lost reading fairly early, but appeared from the outside to be doing Sudoku for longer, but if you looked she just put random numbers in or squiggles but was still pleased with herself.
It was awful to see my incredibly well read, classical music loving mum get the most pleasure in her life from a toddlers 'press the button for the music' book of the Nutcracker.
For mum, it was because the parts of her brain that take the signals from your eyes and ears were dying (as well as the ability to generate words) and so it was like being in some sort of dystopia where nothing makes any sense. She'd cry about needing new glasses at one point when she had enough insight to know she couldn't 'see' properly.
It is absolutely awful to witness, but I can only urge your mum to start using a carer earlier rather than later. My mum managed to stay at home till dad died only because they had a wonderful carer who let him have breaks and mum had been able to get used to the carer enough to co operate

You're right, there is no peace. My mother had dementia for ten years. She was not as agitated as your dad, and could be distracted a bit, but she was very anxious and needed somebody with her to reassure her.

When she moved to a care home she actually became less anxious. Because the carers were very experienced and knew how to reassure her, and she didn't have to worry about her rent or what food she was going to eat, or whether she'd locked the door.

It is worth considering whether the time has come.

A lot of it comes from fear. They don't understand what's happening and it's frightening for them. The repetitive questioning is due to having no short term memory. It's distressing for them and frustrating for you.

There's a really good woman on Insta who explains what is going on - sometimes it's really not what you think it is. Her account is belightcare.

It’s such a very difficult time when a loved one develops dementia and I’m not sure what form is worse. My mother in law was just like your father, OP, and I can still remember during one journey to the memory clinic, she asked me the same question 68 times. She was very docile and placid, but just repeated everything over and over, and had no memory of anything from her past life. By contrast, my mum did still remember quite a lot, but she developed constant and very vivid hallucinations, and used to get very distressed by the people she thought she saw in her house who were stealing and breaking her things. It wasn’t unusual for her to ring me in terror at 4 am to say a man was I her bedroom going through her handbag. She also became quite violent towards the end of her life and at one point she needed six people to retrain her when she was detained in hospital. My mother in law lived like a zombie for about six years, and my mum was in torment for most of the time for three years - it was real torture watching them going through this and the feeling of helplessness. My dad died from a single massive heart attack in his 60s and while that was a terrible shock at the time, I would rather have lost my mum sooner to something very quick before she got to 90 and developed dementia than to have seen the horrible way she suffered.

I don’t think there is ever any easy answer and dementia affects everyone so differently. The only common thing is that it’s a terrible way for anyone to spend their final years.

For various reasons I am back at the house tonight and he’s up thinking he needs to go and do his old job. I have always known he does this regularly but it’s only seeing it you realise just how broken he is now. It’s heartbreaking.