How has a dementia diagnosis affected your family? How do you cope? We are struggling so much.

[HowdoIgetbacktothe80s]

My lovely 80 year old dm lives with my 81 year old dd. Dm was diagnosed with Alzheimer’s around 5 years ago.
My dsis and I both live in the same village and help out as much as possible.
I go in approx 5 days a week and help with as much as I can (and when I am not at theirs I am constantly worrying about them).
Obviously, things weren’t too bad at the beginning but over time the stress of helping mum all of the time is taking its toll on my dad (he is not a naturally born caring type). He is angry and resentful which I understand, he can be quite mean spirited to my mum at times but he is so headstrong and fickle and chnages his mind over things regularly (like getting in help etc) which causes my dsis and I one hell of a lot of stress and anxiety (which he seems oblivious to).
Between us we help out a lot.
A year ago I arranged for a carer to come in to help. Initially for an hour a week to get a foot in the door so to speak and with the hope of upping it from there depending on mums needs at the time but dad won’t increase it. The carer just draws and paints with mum for that hour. In the meantime dad is moaning that every morning mum is struggling to dress and wash herself. This is true. I found her the other morning with toothpaste all over her face whilst trying to shave herself with a toothbrush 😢
He just will not increase the carers hours but instead moans that his life is over and he can not cope and that she will need to go into a home soon (mum is in the late early stages it seems a shame to put her in a home so early on when carers could help)
Money isn’t the problem as they have absolutely loads I think it’s just the idea of giving into the disease and admitting it’s defeating him.
I also had arranged for mum to visit a day centre once a week to give dad a break but after a year he cancelled it because mum obviously would get confused each week, saying she had never been before and hated it. She didn’t, she loved it. I would take her and collect her, she always had a smile on her face when I picked her up and would chat about all she had done there but obviously as with the disease, she would forget everything half an hour later.
I am just as overwhelmed by it all as my dad is. I honestly don’t know what to do to help them anymore.
Yesterday, my dsis and I said we would contact another carer company (which has been recommended to us) and ask them to come in every morning to help mum wash and dress her which would give dad an hour or so to get himself ready for the day. We said we would also take her back to the day centre to give him a break every week.
Dad has terribly high blood pressure which medication isn’t helping and I worry so much for his health too.
It is causing all sorts of anxiety and health issues for myself and dsis which dad is obviously unaware of. It’s affecting my home life as well as dh and I row a lot about how much I help my parents whilst they have a huge amount of money in the bank doing nothing to help.
Until this disease hit our family I truly did not realise what a truly wicked disease it is and how it affects so many aspects of everyone’s lives. My heart goes out to anyone fighting dementia or having to watch their LO’s battling this awful thing.

Is anyone else in a similar position to me? How do you cope with all of this stress? There never seems any light at the end of the tunnel.

Hi OP... I'm in a very similar situation to you with a DM who is 84 with Alzheimer's and a DF who is 88 and trying to care for her at home and doesn't like having other people come to the house! It's hard! I live about 10 miles away and have one sibling who is 200 miles away - so it all falls to me and my wife.

Two things strike me from your post. Firstly from what you have described I really think your DM is more advanced in her disease that 'late early stages'. I would definitely consider her from what you have said to be firmly in the moderate stage (things like describing shaving with a toothbrush etc) try Googling the stages and it will give you a better picture.

I would say my DM is in early moderate stages - diagnosed (late) three years ago. She has someone come in to help her shower once a week, can dress herself in the morning but it literally takes her a couple of hours and she very much lives in the moment now and will not remember anything from one minute to the next. It's horrible. Also bear in mind that the average life expectancy after diagnosis is 8 years and you mention your DM was diagnosed 5 years ago. Again I would think this might indicate 'moderate' stages.

As to help it is REALLY tricky - believe me I know. It is an uphill battle trying to let me get them some support. If I do it, fine... but trying to have someone come to the house and there has been a lot of resistance - especially from DF who sees it as his job to care for DM even though he really isn't up to it anymore. He wants DM at home but resents people coming in even though it is needed. Again not down to any money issues.

Things had to change for us when I was very ill last year and in hospital for 8 days. It took me 6 months to recover and I really HAD to step back. I wasn't able to do the level of helping I had before - and take them to appointments, do jobs around the house etc and they had to learn not to rely on me or my wife (who was looking after me) anywhere near so much. This was perhaps a blessing in disguise as we got them a social services assessment so they are on their radar should another crisis arise. They now have a cleaner once a week, a carer who comes in twice a week for an hour (to help DM with a shower on one occasion and social stuff / make lunch one day a week) and another carer every two weeks for a couple of hours who sorts out all DMs medication into dosette boxes. It's really the minimum and still medication gets mixed up - so we are pressing for them to have more help.

What it has made me realise though is you can only do so much. Going in 5 days a week is a LOT and I can see why perhaps your DH is a bit resentful. I try and go once a week for a couple of hours plus any appointments etc and then I do things for them from home - Dr's phone calls, online shopping for them etc. It still really mounts up. Sadly sometimes it has to come to withdrawing your help to a degree before they will accept outside help. It's hard - but you still have your own life to try and live too. At the moment I'm sure your DF will keep on accepting as much as you will give.

Pebble21uk you are probably right and mum is a bit more advanced than the early stages, as a family, we are probably all a bit in denial but it’s such a strange disease because she can go days being ok (ish) and they seem to bump along ok. Several people who have come in to their home (ie the ss lady when we had an assessment and an OT from the dementia clinic) all said she seemed quite good and they wouldn’t have initially thought mum even had dementia but obviously we see a huge change in her. She is far from ok.
There is only so much we can do to help, you are right.
And dad will rely upon us too much if we allow it. Up until 6 months ago, I was doing virtually everything for them including all of their washing until I realised that dad was more than capable of putting on the washing machine and hanging it all out. Due to the stress of it all and other things going on, I had a near breakdown last year and had to put a stop to some things but it’s still so hard.
This morning I have suggested to dad that we get a carer in Mon-Fri to help mum wash and dress but he said absolutely not, she is doing ok. She isn’t!
I’m off this afternoon to cut her fingernails because they are so long she is catching her face. It’s not something that I really want to do tbh but I have to do this regularly as my dad doesn’t see these small things that still need doing and my dsis won’t do it. It’s so hard isn’t it? I didn’t envisage my 40’s/50’s to be like this.

I was in a similar position last year. It was exhausting mentally and physically. My 81 year old DD is now in a local care home (went in beginning of Dec last year) and has now begun to settle in. My mum (80) was doing everything along with myself and my DH picking up too. The amount of work required when one person was down was phenomenal. From what you’ve said your DD sounds stubborn but needs to realise the true situation. Extra help would be an option as long term it just won’t work as it currently is.

This is so hard.

How plain speaking are you with your dad? To be honest, I think things are at the level of your mum being at risk of harm given your dad is denying her the care she needs - her fingernails are one small example, goodness knows what's going on with her personal hygiene on the days you aren't there to help.

Do you think that he'd really prefer her to go into a home now? If money is no object it might be the best thing for her, as she will get the care, safety and social life she needs, and you and your dad will be able to go back to being her family, not carers at war. If there is plenty of money this may be the happiest solution all round.

You probably have to do much much less, which might make your father realise that he can't cope. He'll thus be more willing to agree to a care home.
It's just not realistic for families to do all the caring.

@HowdoIgetbacktothe80s I know just what you mean about DM presenting better to others. My DM scored highly on the Language part of the dementia testing. She has some stock phrases now which she uses in conversations and to outsiders can appear far more 'with it' than she often is. Like you, we see beyond that during general daily living.

I think if it's already lead you to near breakdown before then you and your sister really do need to pull back - both for your own health but also so that you DF has a chance to realise he can't cope alone. I know how hard that is as you don't want your DM to suffer through his stubborn attitude, but doing less is the only way.

I think in your shoes I would call her GP and have a chat with them about your concerns and make it clear that your health (and your mother's) is suffering as a result of your father's unwillingness to have help from outside. I have found that my DF is far more willing to listen to 'professionals' than he is to me. I have been trying to get DF to have someone in to administer DMs meds for a while now (he says he can manage them, but then when I go over there are doses not taken). The GP's pharmacist paid them a home visit and we discreetly asked her to suggest having someone in for the pills would be a good idea - he agreed when it was the pharmacist but wouldn't agree just for me! Basically you need to find as many people as you can who will fight your corner and put pressure on him.
There are no easy answers though - I'm so sorry - it's so hard!

Also while stepping back is hard as it feels like abandoning your mother to her situation, not stepping back will ultimately be just as risky. At some point a crisis usually happens which forces everybody's hands and far better to have carers involved earlier to mitigate that. Not to mention the effect on your own health.

I think as well that you don't have to feel guilty about getting more help in no matter what your father's wishes. You have to think about your DM in all this and what is the best thing for her.
And if your DF really puts a stop to that the she may be better off in a home where people know how to manage the condition, she will get 24 hour care and the social input she needs as well. And you could go back to being a daughter again rather than a carer.

OP, you need to think about both your parents here, not just your mum. Your DF can’t manage, but doesn’t want outsiders in his home. You can’t continue, neither can your DSis. It does sound like it’s time for her to go into residential care. As harsh as it sounds, do you want your DF to spend the last years of his life having to look after someone who is very very different to the woman he loved?
Talk to him about what he thinks should happen. Support him if he’s saying he can’t manage anymore. My DM eventually admitted that she couldn’t manage looking after her DH (my stepdad) and he needed to go into care. Turns out he was hitting her, she ended up with extremely high blood pressure and anxiety. He was NOT the man she married.

I'm sorry it is so hard isn't it? My Mum (71) has Lewy bodies Dementia was diagnosed during Covid and it has been such a battle to get my stepdad to allow any help for them.

If she was assessed by the council they should have recommended a package for her and also assessed your Dad as a carer and his needs, what did they recommend? My Mum is now in late stages and we have only just got her care properly sorted out - she can't feed herself and can only be moved in a hoist etc and is in a wheelchair.

Is there someone else your Dad would listen to?? My stepdad won't listen to me or my sister but will listen to well basically a man! Even if they just repeat what we say.

Neither me or my sister live local to my Mum but luckily our other family are local to them - is there anyone else local to them that can help you out - family friends etc?

I have had to work a lot on the guilt of not being available there all the time and I just wanted to let you know that there is no good way to deal with all this. It sounds like you and your sister are doing a great job.

Take care.

Forgot to say when I arranged the care I didn't ask my Stepdad before arranging it because I knew he'd say no. Might be worth arranging it and then being there on the first day to make sure if goes ahead - better to ask forgiveness than permission particularly when there is denial about the reality of the situation.

I'm so sorry you're going through this. Perhaps you can talk to your dad and have a Frank discussion. Tell him it's massively impacting your life and you need to get external help. As hard as it is, you might even have to withdraw a tiny bit...essentially as long as you do everything, why would your dad pay for help?

When my parents were in their 60s, we had a big family chat and decided from the outset that if things ever got bad, the family would always oversee care but wouldn't do 'personal care' (washing/toileting etc). My mum has passed away and my dad has chronic health problems but we have a good system in place. I do his household admin (bills/ordering food/arranging cleaner/hospital appointments etc) but he has carers twice a day who help him with shower/dressing etc. It's still hard lots of the time but it reduces some of the pressure on me and means when I'm there, I still get to be 'daughter' and not just carer.

It sounds as though you really need help! You could start by reducing your time there to 4 days a week as a way of beginning to set a boundary.

It’s awful. Like a bomb going off in the family. I imagine you are doing FAR more than you think. It takes its toll. Not just the actual caring but the mental load, the anxiety waiting for the next crisis. Dementia is progressive, just when you solve one problem you uncover another. It only gets worse.

How we coped: admitted we couldn’t do it. Contacted social services and got an assessment of care needs. Focussed on needs not wants. No one wants any of this, but things need to happen to keep your mum safe. And keep the rest of the family from reaching breaking point.

my DF didn’t want to be responsible for making the decision to put DM in a home. So it was me and my brother. We had to basically lie and tell her she was going to the Drs and whip her round to the home then tell DF to pay it. It was the right thing to do but it was easier for him to justify it as our decision not his. He went to pieces when she left even though he was running the house. Your father maybe doesn’t want her to go but knows deep down she needs to but wants you to be the bad one to make the decision.
my DM is so happy in the home, despite thinking we work there when we visit 🙄😂

My DF was finally diagnosed last year even though we had all noticed a change in him going back several years and COVID really enhanced this.

The doctor kept telling us it was just 'old age' and was very reluctant to refer him for further testing so we really had to push for it.

We mistakenly believed that getting a diagnosis would lead to help, support and medication but how wrong we were.
The first thing that happened was a driving test, that he failed, having been made to drive an unfamiliar car in an unfamiliar area with two complete strangers !

The sudden loss of his car really exacerbated his Dementia and it's been downhill since then.
ALL help has to be fought for and paid for. He goes to a day centre once a week that my DM pays for at £80 for 4 hours. This is really to give her a break.
As his main career she showers him, sorts his clothes and then supervises his breakfast as he's still able to sort that for himself.
She involves him in making all other meals to keep him occupied and as focused as possible otherwise he becomes bored then frustrated which turns to aggression.

He hates her being out of his sight and follows her around like a child.

I have him when I can but as both myself and my sibling work full time it can be a challenge.
My DM is able to do her bills, banking and shopping on-line thank god.

Both my parents are 83 and physically fit and able at the moment.

The doctors have been monumentally useless to say least and the so called 'dementia team' from the surgery are yet to get in touch despite several requests.

If it wasn't for my capable DM I think we would be seriously looking at carers coming in by now but I really don't think we are very far from this as it's exhausting all round.
The elderly really shouldn't have to care for the elderly - social care in this country is shocking !

MildredMcDonald my dad is so very stubborn over it all, he changes his mind about things on a daily basis, it’s so tiring. I end up arranging things then having to cancel as he changes his mind like the weather.
LadyGardenersQuestionTime I am quite plain speaking with dad but if it’s something he doesn’t like or we clash he just won’t speak to me!
Pebble21uk it’s so difficult isn’t it? I have taken a little bit of a back seat but if I draw back further then it will be mum who suffers. Dad just doesn’t seem to see the things that needs to be done on a day to day basis. He will let he nails get terribly long, if we hadn’t arranged for a hairdresser to come once a week and if I didn’t wash mums hair, he wouldn’t bother. Her breath smells bad as she obviously isn’t brushing her teeth properly and we think she isn’t wiping herself properly when she uses the loo. Dad doesn’t over see any of these things yet refuses help. I contacted social services, they came and did a needs assessment (I was there at the time) the lady said because they have over the £23,500 threshold there is nothing they can do to help. Sadly, mums gp was useless, they left her with a gaping hole in her leg which turned out to be a nasty ulcer, that took a year to heal (after I’d changed her gp surgery), the new GP is t much better! It’s like going round and round in circles.
Today, I have arranged for mum to go back to the day centre regardless of what dad says, like you say, she needs the social and mental interactions. Dsis and I will have to get firm with dad and push harder at getting carers in.
Soontobe60 I totally get what you are saying but it’s so very hard to watch. My mum really isn’t ready for a care home, she still knows what is going on around her. She cries to me every day, she says if she has to go into a home she would rather die, that’s heartbreaking. I know my dad and if mum goes into a home he will hardly visit her, that will be left to dsis and I and as dsis works full time, ultimately the main visiting will be down to me. I can’t bear the thought of mum in a place she doesn’t know. My mum has enough money of her own to pay for a carer and even a live in care if need be, they have enough room but again dad says no. He says no to everything and thinks they can bump along ok.
Thank you Fofftwenty21 I am sorry you are going through similar. I think we all feel guilty wether we are miles away or nearby, it’s such a horrible disease and puts so much pressure on every member of the family doesn’t it? Sadly, ss couldn’t help at all, we had a meeting a few months ago, the lady was lovely but said as mum and dad are over the £23,500 threshold there is nothing they can do. We also had a OT come but she could only recommend things like grab rails, bath hoists etc. Both my parents are only children so we are a small family, there are no aunties, uncles, cousins etc just dsis and I and our husbands, my husband is pretty straight talking but he would fall out with dad. Sadly dad falls out with many people because he is so bloody stubborn and awkward. I do think it will have to be a case of arranging care over dads head, we both have full POA. He will be glad in the long run, I’m sure of it but it’s the unnecessary battle that we have to go through which is so draining.
nothingmoreatthemo that was so sensible of your family, tbh, I really wish we had had that conversation years ago. I have withdrawn a lot from last year but if I go a day or two dad will just constantly ring me. I think he panics if he thinks we are not on hand.
Candleabra
It’s awful. Like a bomb going off in the family. I imagine you are doing FAR more than you think. It takes its toll. Not just the actual caring but the mental load, the anxiety waiting for the next crisis. Dementia is progressive, just when you solve one problem you uncover another. It only gets worse
That’s it, that’s exactly it^
Gloriousgardener11 your story almost mirrors ours (and probably hundreds more). Everything has been a battle. We too, had a huge battle even getting mum diagnosed, it took nearly 2 years. Everything from ‘just’ old age to vitamin b12 deficiency was suggested. The dementia team at the hospital were helpful for the first year, then Covid hit and it’s actually been reduced down to the bare minimum, we have had zero help from them since 2020. Literally everything has to be paid for because mum and dad have their own savings. I’ve had ss in but no one will help or even give suggestions or recommendations. I have to take to FB local groups for help. Alzheimer’s U.K. have been the same since Covid hit. It’s a disgrace there are so many elderly people struggling to survive and totally heartbreaking.

I think just be prepared. My mum went from saying "put me in a home then" to going into a home to dying (sepsis) in 4 months
I know that sounds awful but it's better to be as prepared as you can
She was diagnosed in March 2017 and died June 2022

It is hard to say and hard to see if you are close to the situation but your father seems abusive.
He is controlling your mother's access to care for his own reasons.
I don't know if that is monetary or dominance and control.
This happened in my husband's family where his aunt wasn't being looked after by his uncle. He was effectively starving her, telling her she had already eaten while making himself a fry.
Her lovely kind son in law paid for a five star care home and some were horrified but she was safe, fed and cared for.

How does your mum feel about having a carer in of a morning to help her? If she is happy with it then I would arrange it on that basis. Then I would make sure you are there for the first weeks visits so you can tell the carer the situation with your dad and be on hand to manage him.
He sounds selfish and controlling to be honest. You sound like you're doing so much because of this and it isn't fair. Are you claiming carer's allowance? I don't know the criteria but it sounds like you do a lot.

Rebellious23 I’m sorry for your loss. You are right though, life does like to through nasty curveballs just when you aren’t expecting it.
Sadly, we do see it 17to35, he can be down right nasty at times but says it all in a ‘jokey’ way, he has been like this for as long as I can remember, it’s very passive aggressive but it’s getting worse. I am certain he isn’t physically abusive and does cook for mum but he is so nasty verbally. He is quite controlling over the money, they have hundreds of thousands, most of this is my mum’s money from her inheritance but he always took it that it was ‘their’ money and he invested it all without really consulting mum. I say all this but he does have good points too, it’s so complicated at times.
Choconut mum is at the stage where she truly believes she does everything still, she thinks she cleans, cooks etc. If I mention a carer she looks at me bewildered and says there’s absolutely no need as there is nothing wrong with her and she is capable. She thinks she cooks a roast for us every week when the reality is that she hasn’t cooked for about 4 years and wouldn’t know how to. I am claiming CA as I only work part time and really needed that extra money. I feel bad that I have never revealed this to my dad but I do a lot of stuff which he doesn’t even see like sitting on my mobile phone for ages trying to get through to the gp or hospital (mum has other health issues), that all eats into my monthly data etc. If he knew I claim CA he would expect me to do even more, as it is he moans that he can’t ever go back to golf but he would be away from 8am-3pm 2 or 3 times a week and I have my own health issues and family to deal with, I can’t give up that amount of time on top of all I already do for them.

My FIL is has Alzheimer's and he is living with us for now. It's been relatively easy so far as he is quite a chilled person but last night he was up all night putting lights on, trying to make coffee and wondering around the kitchen drying dishes etc etc. Woke the whole house up, husband has a busy day today, I'm working, kids have long days at school, exams etc etc. Feel dreadful. He is very stubborn insisting he has the right to make coffee at 4 in the morning...😫

linnet88 My mum has started to do this, up at 4am as though she is ready for the day. It is exhausting my dad and from what I see on the FB support groups I am on, this is quite a regular thing with dementia. I feel for you, that is tough going. I hope for you that it’s a one off event.

I really feel for you OP - we are in a very similar position (except in our situation, the gender roles are reversed). It boils down to a sort of Catch 22 situation. Your DM is not well enough to care for herself, but she's well enough to have a good quality of life with the right support. She's still got enough capacity to know that she wants to be in her own home and to be cared for there. Meanwhile, your DF doesn't want to be a carer, and isn't providing the care that your DM needs - and nobody can force him to take on that role. But he also doesn't want to have carers in his house (understandable - it can be quite intrusive). Your DF controls the finances, and (if your situation is anything like ours) then your DM wouldn't make any decisions without his blessing anyway (eg it would be very hard for you to unilaterally arrange for carers to come in - your DF simply wouldn't accept it, and your DM wouldn't go against his wishes).

We have not found a solution to this. We've pushed for more carers, but she doesn't like having people in the house, and thinks it's a waste of money, largely because it would be 'just' companionship care rather than personal or nursing care (like your parents, they could easily afford it). Daycare seems very patchy and inadequate. She swings between wanting to put him in a home, which he desperately doesn't want, and thinking that it's too early for that and would lead to a rapid decline, and that they can manage at home on their own, which they can't (at least, not without a horrible and unhappy atmosphere all the time). All the time, he's spending his final months? years? of relative lucidity living a pretty unhappy existence being constantly put down and snapped at, while she's spending her elder years cross and resentful and unable to live the life she wants.

It's desperately sad and incredibly difficult. To us on the outside, it seems so clear that the answer (at least to try) is to buy in some very regular home care so that she can live her life more independently and he's looked after patiently and kindly. But she's got the right not to want that, and ultimately it's their decision not ours. Sadly, the situation is temporary - in the end he will almost certainly need to go into a home - but I wish they could both be living a happier life at the moment, rather than unhappily treading water until that time inevitably comes.

That is it itrhymeswithorange, that is exactly the same situation we are in and it is so damn hard isn’t it? I see both of their situations and do understand but it’s so difficult. I really don’t know what the answers are either. I am sorry you and your family are in the same situation. I wouldn’t wish this on anyone.

It is very very hard; and refusing care is standard in this situation. I have experience both as a SW and as carer to my OH before he died.

Most of the clients I visited said they did not need care, or their spouse refused. Unfortunately you cannot make people accept this. And your parents are of the post-war generation when they will have heard the litany of "waste not want not" and the prime importance of saving everything dinned into them as children.

To be honest, having carers in can be a mixed blessing. I found that the agencies sent different carers and I had to keep repeating what needed doing - my OH was immobile and paranoid and changes of carer were difficult for him. Often they were E European and he believed they were Russian spies! Luckily they all had a sense of humour and were able to joke about it! It is also a huge invasion of privacy both for the patient and the carer. We eventually had live-in carers and we were having to share our home with strangers, who varied a great deal in their ability to fit in - I could tell some tales....!!

It may be that your Mum would be better off going to the day centre say twice a week - she enjoys it and your Dad could chill out a bit or go and pursue his hobbies. I used to have a carer in specifically so that I could go to choir as this helped keep me sane. If it is put to him in that way, then maybe he might be more accepting of her going.

You have all my sympathy. You are beset from all sides. I can absolutely understand your OH's view - and I am sure you can too - that they have the money to provide themselves with proper care; but very few people of that generation are willing to spend it.

So may of my clients used to say they could not spend it as they were saving for a rainy day; and I used to say: "This is it! This IS the rainy day!"

We can't cope anymore and are having to send FIL into a care home. Last night he woke up at 2am again and at first I tried to ignore him wandering around putting lights on and off, opening doors etc, but then he came upstairs where we all sleep and turned the lights on, so I had to get up. He just wouldn't understand/accept that it was night and that he should go back to sleep. I had to stand outside his door for a good while repeating myself and trying to persuade him to go to bed while and he just kept trying to come out. Said he couldn't hear my loud whisper. In the end I tried to keep the door shut and he started banging loudly on the door!

So we've booked him a place from next Fri. Luckily he has already had the assessment so we're ready to go.