Thinking of moving dementia patient Dad in with our young family, looking for people with experience of this situation please

[lea123e]

Afternoon all,

My Dad is currently in his 5th year of a Vascular Dementia diagnosis following a stroke. I have been his main carer since 2019. He is 74 and his symptoms so far - cognitively, the thing he struggles with the most is not being able to understand numbers so cannot keep appointments or understand day to day finances, paying bills etc. Not a massive problem as he appointed me power of attorney as advised by the hospital. Speech, he often cannot get to the word he needs which results in him making up his own word, I usually know what he means though. He can mostly remember something you may have told him the day before but not always and mostly doesnt retain new information for long periods. His personality at present is the same as always, usually fairly quiet but prone to occasional political outbursts/outdated opinions.
He currently lives alone, at the top of quite a big bank in a house that is on different levels so has lots of steps. His mobility is also failing now, mostly due to needing a knee replacement, which he has refused, prior to dementia, due to having issues with blood clots. Getting around he uses a rollator type walking frame(reluctantly) but very soon I think we will have to go to a wheelchair for out of the house as now even with the frame, he is extremely unsteady with the leg giving way regularly. My fear is, as he refuses to have any help apart from me(we did have a care compay who were terrible unfortunately and due to this he has ruled out any further "interference") that I am just going to find him one day in a bloody heap at the bottom of the stairs, that would be horrendous for him and for me.
I have been thinking more and more lately about moving him in with us, not that our house is automatically set up for him, we would need to create a "Grandad" annexe with everything on one level. I do have reservations though and this is what I was hoping someone with some insight could advise on.
I have two young boys, age 3 and 9, worry that if we are to have the nasty, aggressiveness of dementia that there CAN be, I dont ever want them to be scared in their own home. Of course, there's no saying that will definitely happen. Also, what if it all becomes too much and I cant cope and he has to go into care anyway? I will have failed, potentially exposed my boys to some scary behaviour and Dad ends up in a situation that I know he wouldnt choose. He cant stay as he is but is moving him in with us the right thing? My partner is luckily on board with having him with us but I dont want to make the wrong decision for all of us.

Sorry to have made such a long post, well done if youve gotten this far!

 

[try again]

I don't have advice with young children but I think you would find it very difficult to manage everything.

 

[Rosettastone57]

Don't do this, just don't. There are many posts on here of families who have placed their loved ones with them and quickly regretted their decision, mainly because they are unprepared for the negative effects on them all. Persons with dementia become so self absorbed that everything and I mean everything has to revolve around them. It is unlikely your father would stay in the annexe he will want supervision 24/7 no one can leave him for a moment. All this would mean sharing with your children to their detriment. Going into a care home is not a failure, you would have a whole team 24/7 looking after him with you being his son,/daughter not a frazzled carer.

 

[jugglingmum]

Please don't move him in with you.

My children were 8 (son) and 12 (daughter) when my mum had a crisis, she stayed with me alternate fortnights, the other fortnights with my brother whose children were 4 and 6.

We both found it extremely hard to deflect mum's behaviour around the children.

Mum was only in early stages of Alz at the time and generally her behaviour wasn't that noticeable outside the home.

As time went on we stopped having mum to visit (only for a few hours) as it was too much for the children and in time my son was clearly struggling and I said he didn't have to see her, he was about 14 then. He did visit her when he was 17 and she was end of life, but by this time her difficult behaviours had disappeared.

PWD don't have filters, and become very self centred. If in a house with children they can become very jealous of the children, or else behave in a way that creates issues. Little things, like my mum constantly criticised my 8 year olds cutlery use at every meal (he had some late development coordination issues - long since gone) can cause major issues for children.

Speaking with my children when they were much older I discovered my mum's stay with us had affected them much more than I realised, and even though it was only for 3 months, I wish I'd found a local airBnB for her to have stayed in whilst I found somewhere suitable.

There comes a stage where they either need constant supervision, or need you there as a comfort blanket. If his mobility is already poor you won't be able to leave him, even if in a one level annexe. And you can't take a PWD along to kids swimming lessons, school nativities etc if they have strong outdated opinions which they are going to broadcast.

Some members have lived with an elderly parent and looked after them for a long time, but they have given up work to do this, and don't have children. And have found it extremely hard work.

Care homes will provide a safe enviroment.

Dementia is in the process of taking one life, don't let it take, yours, your children's and your partners. There is a lot of progression of dementia yet to come.

 

[Violet Jane]

Don't do it. When you can't cope any more Social Services will show little interest because he will not be at risk (as he is living with you) and they will keep insisting that it's in his best interests to stay at home (i.e. your home). Normal life will be disrupted. Work, schoolwork, sleep, social lives and relationships in and outside the family, hobbies, co-curricular activities and holidays will all be impacted. You can't get the time back if things are horrible for your children. Please put them first. They are young and take priority over your father.

And building an annex with your father's money is fraught with difficulties because of the Deprivation of Assets rules and your role as a financial attorney.

 

[scotlass]

no...I don't advise it...My mum had dementia, she lived alone ,we took her to live with us and our two children, they were 14 and 16 years....my mum adored her grand children..absolutely,,,but as she became gradually worse with the dementia,she began being nasty to them...she didn't want them or my huband in the house...just wanted me...because by that time she thought I was her mother....and she became very selfish, the only time she was pleasant was when she was getting her own way, after 2 years I had to find a care home for her , I was at my wits end. I hate to say this but I was starting to resent her, she was not my mother any more. she was so different when she was in the care home...she settled well,and we could visit her anytime...please don't put you family through that

 

[JaxG]

As others have said, please don't do it. As long as your father lives alone, SS have a duty of care to him when things get too difficult, but if you move him in with you it will be your responsibility. I have cared for my husband with Vascular Dementia for about 6 years since symptoms began and it has been hell. It became very difficult to have the grandchildren over because he was aggressive to them, but caring for someone with dementia is a full time job, and it only gets harder. You have a young family and they deserve your time and energy.

 

[Kevinl]

I agree with what's being said by most here, not a good idea. No secret my wife got early onset AZ, packed the youngest (16 at the time) off to live with his big sister 150 miles away the situation became so upsetting for him.
I can't imagine situation like yours, two quite young children and someone with AZ, sorry, no from me.
I appreciate you love them all and want to do the right thing for them all but if it was my daughter writing this about me, I'd say don't put your children at a possible risk be it physical or psychological.
K

 

[JoShurm]

Please don’t do this. My mum lives me already and now that she has been diagnosed with Alzheimer’s I have no choice but to keep her here. I don’t have a close relationship with her and my husbands is finding it hard having her around especially now the Alzheimer’s has kicked in. I hate having her here but feel very guilty and also jealous of my sister in Florida living a lovely retirement whilst I empty commodes and battle with hopelessness. She got a chest infection and I even hoped it would be a relatively good end for her as she no longer wants to live and keep asking me to finish her off! It’s soul destroying. I’ve looked at nursing homes but I’ve worked in them and wouldn’t wish it on anyone.

 

[lea123e]

Wow! Thank you all so much, I never expected so many responses so quickly. Massive sympathy to those of you who have had a loved one with dementia and also those who have had awful experiences taking them in ❤

The recurring theme of PWD becoming increasingly possessive over the carer is one I hadnt considered and also my kids being on the receiving end of his nastiness - because that has happened to a degree already, we see it more when he comes on holiday with us.

I have been caring for him in total for 15 years now when he was first diagnosed with Bi-Polar disorder, not as involved then as I am now, I had to give up my job in 2021 to try and keep up with everything, as the only child and no relatives near it does fall to me. I have already been on the receiving end of some dangerous situations, physically as well as verbally so can draw some parallels with that and I dont think I want to go back there and definitely dont want my kids to be in the vicinity of it. Social Sevices have done next to nothing for us - ever and I don't expect them to any time soon. I think with the collective knowledge, for now, the best thing would be getting him somewhere more suitable, closer to us for as long as it is feasible.

Thank you from the bottom of my heart for all of the advice, I hadnt expected it to be so unanimous, naive of me I guess but it really does put things into perspective.

 

[JaxG]

You may be his only child, but honestly you have done so much for him already. You need to realise that you are allowed to say no, you are entitled to a life too. As daughters I think often the caring burden falls on us. I am looking after my husband with dementia, my 90 year old mother has become increasingly demanding over the last 4 years and I've had to pull back before I break. Do please look after yourself and your family. ❤️

 

[Kevinl]

Lea, you're a hero, but it is time to look to the future keep the little ones safe, that's what I'd tell my daughter if it was me.
K

 

[ZoeJ3k]

Afternoon all,

My Dad is currently in his 5th year of a Vascular Dementia diagnosis following a stroke. I have been his main carer since 2019. He is 74 and his symptoms so far - cognitively, the thing he struggles with the most is not being able to understand numbers so cannot keep appointments or understand day to day finances, paying bills etc. Not a massive problem as he appointed me power of attorney as advised by the hospital. Speech, he often cannot get to the word he needs which results in him making up his own word, I usually know what he means though. He can mostly remember something you may have told him the day before but not always and mostly doesnt retain new information for long periods. His personality at present is the same as always, usually fairly quiet but prone to occasional political outbursts/outdated opinions.
He currently lives alone, at the top of quite a big bank in a house that is on different levels so has lots of steps. His mobility is also failing now, mostly due to needing a knee replacement, which he has refused, prior to dementia, due to having issues with blood clots. Getting around he uses a rollator type walking frame(reluctantly) but very soon I think we will have to go to a wheelchair for out of the house as now even with the frame, he is extremely unsteady with the leg giving way regularly. My fear is, as he refuses to have any help apart from me(we did have a care compay who were terrible unfortunately and due to this he has ruled out any further "interference") that I am just going to find him one day in a bloody heap at the bottom of the stairs, that would be horrendous for him and for me.
I have been thinking more and more lately about moving him in with us, not that our house is automatically set up for him, we would need to create a "Grandad" annexe with everything on one level. I do have reservations though and this is what I was hoping someone with some insight could advise on.
I have two young boys, age 3 and 9, worry that if we are to have the nasty, aggressiveness of dementia that there CAN be, I dont ever want them to be scared in their own home. Of course, there's no saying that will definitely happen. Also, what if it all becomes too much and I cant cope and he has to go into care anyway? I will have failed, potentially exposed my boys to some scary behaviour and Dad ends up in a situation that I know he wouldnt choose. He cant stay as he is but is moving him in with us the right thing? My partner is luckily on board with having him with us but I dont want to make the wrong decision for all of us.

Sorry to have made such a long post, well done if youve gotten this far!

Please don’t.
I am currently in this situation (dad lives with me and my young family kids 1,6,9) dad moved in 2021. We had an “accidental” pregnancy and have been absolutely broken by trying to be everything to everyone. Dad is well cared for, my children ((two have special needs)) are well cared for but I’m unwell mentally and under the care of mental health professionals because of it.
Dad has been unwell last year with a) heart attack leading straight to heart failure (he didn’t realise his crippling chest pain was a heart attack, I was out with my kids for the day, dad couldn’t use the phone)), b) fell all the way down the stairs and broke his back, c) pneumonia/sepsis and renal failure due to not drinking!. My kids have seen him so ill, they’ve seen a grandparent change to a shell infront of their eyes, they see confusion, incontinence, me looking after him in ways I never imagined. I WISH we didn’t make this decision. That’s so hard to say but it’s 100% true. As much as I know he’d be dead without me and my husband sacrificing ourselves, it’s has literally ruined us

 

[JaxG]

Please don’t.
I am currently in this situation (dad lives with me and my young family kids 1,6,9) dad moved in 2021. We had an “accidental” pregnancy and have been absolutely broken by trying to be everything to everyone. Dad is well cared for, my children ((two have special needs)) are well cared for but I’m unwell mentally and under the care of mental health professionals because of it.
Dad has been unwell last year with a) heart attack leading straight to heart failure (he didn’t realise his crippling chest pain was a heart attack, I was out with my kids for the day, dad couldn’t use the phone)), b) fell all the way down the stairs and broke his back, c) pneumonia/sepsis and renal failure due to not drinking!. My kids have seen him so ill, they’ve seen a grandparent change to a shell infront of their eyes, they see confusion, incontinence, me looking after him in ways I never imagined. I WISH we didn’t make this decision. That’s so hard to say but it’s 100% true. As much as I know he’d be dead without me and my husband sacrificing ourselves, it’s has literally ruined us

What a nightmare, I am so sorry that you find yourself living like this. Surely you can get him into a home now? There is so much guilt around dementia and being carers - I HATE the Alzheimer's advert on TV hammering home the point that you married 'until death us do part, in sickness and in health'. So you married them so just suck it up, even if it destroys you. Or he's your father/mother, you owe it to them. NO YOU DON'T!! I have 3 adult children and I would NEVER want them to give up their lives and have me living with them. They deserve a life before they die. They deserve to give their children the undivided attention they need. Please contact SS and say you can't cope any more - you have done an amazing job but enough is enough.

 

[GennyWren]

I always told my parents that I would be useless at caring for them, but I also didn't want to see them in a care home. However that was some years ago and it's not until you're in a situation that you can truely make the decision you need to.
My brother, his partner and her daughter (10) took mum in to look after her as part of the family. After nearly 2 years, I think it's taking it's toll. Mum basically requires a lot of attention and it's hard work, and will only get harder.
It's easy for me to say this as I don't do the full on caring but looking from the outside in, I wouldn't put yours or your families life on hold because you think you should look after your dad. There would be a lot to change in your home, which will no longer feel like your home. Find a good care home and you never know, he might actually like it. Good luck in whatever you decide to do.

 

[JohnH44]

Hello, I am 79 and still remember when my mum moved my Grandfather in to live with us when I was 17/18. My father extended my old bedroom (I had moved in to my sisters old room as she had got married) to make it a bedsit for him. I still remember that this was the time when I resolved to leave home as soon as possible and moved to Scotland from Surrey, it is a terrible memory for me for that was the last few years of my fathers life and I carry that memory today. I was not particularly close to my Grandfather but he ruined my mothers & fathers life and I can never forgive him for that. Please be very very sure that you do not give your children a memory they will not want for the rest of their lives like my grandfather did.

 

[Sarasa]

Welcome to Dementia Support Forum @JohnH44. I hope you find this a useful and supportive place.

My husband felt very much as you do about his parents. They moved from a town to a village so as to have room for his maternal grandmother when my husband was about 16 and my husband really resented the having to help with the care and that he'd been moved away from all his friends. Sorry your memories of your father have been tainted by the memory of your grandfather.

 

[KatFox]

I asked the same question back in October/ Nov - and after the responses I got - I moved Mum into a home in Dec. She'd only been there a few days and was found on the floor as she collapsed and was rushed into hospital - turned out she had pneumonia - and god knows how long she'd been struggling with that at home. I now feel so lucky she had been in the home at that time - it could have been so much worse

So don't wait for a crisis/ accident to prompt the decision - it will rush it making it even more stressful. No need to be scared of making this decision either - 2 months down the line for me and I know it the best decision I made for us both. Mum is thriving in her new environment - and so am I now. Its time for you to swim - otherwise you'll sink along with your Dad.

I wish you all the best for you and your Dad x

 

[smithdee]

This is such a tough decision. I help my mum care for my dad and whilst I don't live with them, I am at their house every day, for long periods of time. I personally hate to see my dad deteriorate day by day, week by week. I've seen him get aggressive towards carers and my mum, I've seen him fall over and soil himself on the carpet, I've seen him choke on his food, I've seen him change from the loving, outgoing dad he once was, to actually raising a fist at my mum grabbing her, kicking her, refusing personal care and choosing to actually sit in his own mess refusing to be cleaned up or have a wash, I've had to feed him, wash him, dress him. It's upsetting for me to watch, but also to know how much it's upsetting my mum too (although she never shows it), knowing she is spending what could well be her final years also, looking after him when she could be out enjoying her life to the max. As a middle aged woman, I can only just about cope with the duties I have now - don't think I could cope with having him move into my own home permanently, especially with young children. This sounds awful, but I breathe a sigh of relief when he is put to bed in the evenings and I shut my parents door behind me and head home. I feel like I have escaped, albeit only for 12 hours or so until I repeat again the following morning. I couldnt bare the idea of being on hand 24/7 with nowhere to hide from it. It is sooo sad to see my dad how he is now, and I know for a fact if I could rewind 10+ years he would absolutely hate the idea of us looking after him like we are. My husband can't bear to visit my parents and would rather just remember my dad how he was prior to being diagnosed.

 

[Daisyjm]

Hello, a very warm welcome.

I wanted to also reply, I’m sorry you are in this difficult position, I know it is a very emotive decision for you and your family and I didn’t want to sound negative. I do however agree with a lot of the comments, I feel having your dad living with you may become very difficult for you to cope with, especially as your children are at a young age.

My experience was that we moved in with my parents for around 3 years whilst we were renovating a house. We moved in before my father had been diagnosed, but after a year of living with them, my dad was diagnosed with dementia. At first I thought that this would be a big help as we were all there to help out and having all his family around would be a positive thing. However, this was not to be the case, as my dad didn’t want anyone apart from my mum, it made him agitated and anxious having so many people around.

My children were older, (teenagers) and as my dad changed (albeit very slowly) he became very possessive over my mum and was starting to become paranoid about his grandchildren being there, what they were doing, who they were bringing home, where they were going etc.

It was very upsetting to see, as a grandad that was so involved in their lives previously and loved them so dearly, to then not being interested in them and actually becoming cross and irritated by them. They found it uncomfortable at times to see him in one of his moods which could change from one minute to the next. They couldn’t bring any friends round as my father was very paranoid at who was entering the house.

I know it’s not his fault, but in his eyes, he was the most important person and everything had to revolve around him, this included no one having access to my mum. If they spoke to my mum, my dad would become very jealous. As they were older, they will have understood more and been able to rationalise to some extent, what was happening, but younger children may not and the experience might traumatise them.

Now that we’ve moved out, things aren’t so intense, I still visit every day as I’m their only child. Dad doesn’t ask much about the grandchildren. Some days dad glares at me and doesn’t speak, other days he’s happy to see me and his sense of humour comes back, this is becoming less and less though, and now a lot of the time he’s cross and unhappy.

Like your dad, my dad would never agree to having carers in and I wouldn’t ever broach this subject. If anything happened to my mum I would not have him to live with us, I know this may sound cold hearted, but part of his anger and paranoia is directed a lot at me, he’s suspicious of me and has screamed a few times that he wishes I was dead. We have discussed it and my mum agrees it wouldn’t be fair to have him live with us, and that would be the point probably, that he may need a care home.

I do wish you all the best with your dad, keep messaging on here, there’s lots of help and good advice from everyone xx