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

[TMH]

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.

I absolutely agree with Rosetta. My children are grown and I moved in with my dad 3 months ago to look after him. My partner refused to come with and lives in our home. Honestly, it's not worth your sanity. I had dad in respite while I made improvements to his home and he was quite happy there although he was unkempt and they clearly didn't have a handle on the fact he'd become doubly incontinent (I found that out the morning after I brought him home). I'm on my second care company, they're all useless. We're paying a fortune per month and I'm showering and shaving dad every day because they can't manage the basics of personal care. I'm on flexible working hours to accommodate this. I don't count for anything in all of this. It's an absolutely thankless task and I don't have a young family. Care homes are not a failure if they save your sanity and your own quality of life. None of us are getting this time back. Be kind to yourself and your young family x

 

[Ellie2018]

I don’t have experience to share but one of the other things to consider is that a change in environment can bring on a deterioration in behaviour so what you see now might not be exactly what you get after the move.

 

[SMBeach]

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!

I’ve been toying with thoughts like this on and off for a long time. Dad is in a care home in Scotland where he seems settled and happy. Or as happy as you can be in a care home situation. Yet I’ve toured with the thought of either moving him to a care home close to me in Kent or move him in with myself and my 3 teens using his money from house sale to pay for carers. But I do know that moving him into my house is a definite no even though I still fantasise about being able to do that for dad. Dad actually turned up on my doorstep having driven the 500+ miles from Scotland then didn’t leave until over a year later. I didn’t know he had Alzheimer’s or dementia but he did odd things which I now realise were his undiagnosed Alzheimer’s. He’d pack the car go go back to Scotland then pop back into the house but then forget to go to Scotland. Because I was unaware of the Alzheimer’s as was he, I started to think he was doing it to be deliberately cruel. It was the worst year of my life. I was going through a divorce at the time also. I now work from home and so can’t have dad here when my clients visit. I know gif sure that having dad in my house is not an option. I know how hard it was when he was here and that was before he had incontinence. And he gets quite arrogant and opinionated and argumentative. My children also said it was not an enjoyable time for them. My youngest was only 10 so dad was here gif over ten percent of her lifetime. They constantly asked when dad was going home etc. Yet I still toil with it in my head….

 

[Sonya1]

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!

Others have said pretty much everything and all I can add really is this ... Don't, just don't, do it. You may inadvertently be putting your own children at risk from the absolutely dreadful behaviours than can occur during the dementia journey and you must prioritise their needs over your Dad's, as difficult as that is to contemplate. My Mum suffered dreadfully with trying to keep Dad at home, her own safety was seriously compromised...it was not pretty. The best decision to make for your Dad who you undoubtedly love so much, is to find him somewhere safe to move to, to advocate for him, to visit him and spend quality time. Your boys can never have these innocent years back and honestly it can become so very, very distressing and difficult. I feel for you so much as a fellow only child x

 

[Karenlansbury]

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

My lovely mum has been living with us for 4.5 years now after 6.5 years diagnosed with mixed dementia. I beg you not to do it! Whilst it’s been a privilege to care for mum, I had no idea how difficult it can become. She is an angel, but watching her decline is very upsetting. The restrictive living is almost unbearable and if you read any posts about the guilt of moving a loved one to a care home which becomes a reality after 6 + years, it feels worse if the person you love is moving from your own home. We haven’t made that decision yet, but everything and I jean everything in your current life will have to change. My husband and I have to tell each other when we are having a shower so one can sit with mum. We have to food shop alone, we rarely go out together, it’s the simple things you kiss like having an extra hour in bed on a Sunday if you want to? You just can’t… that’s not to mention the sadness the illness brings to your own home… be strong now and I am certain it’s the right decision

 

[Purple rain 50]

I’m so glad to have read this thread tonight! My mind is constantly backwards & forwards about whether to move mum in. I work full time & am a single mum to a 9 year old. Mum has been very dependent for last couple of years (diagnosed with AZ six months ago). She wants me with her all the time & our lives are already so restricted because of this.

Some days I think it would be easier if she was at mine (& kinder because I know she’s relaxed & happier here) & I have this rose tinted view of caring for her! But half an hour later, I’m driven mad with frustration that I can’t take my boy out for more than 2 hours / do normal school holiday stuff.

I know I can’t give up work anytime soon (mortgage to pay & child to raise for another 10 years), I feel pretty broken already just with the daily grind of doing the same flipping thing every single day & at the moment mum still relatively ok (no personal care required yet!).

So I’m going to try & keep her in her own home as long as she’s safe & hopefully introduce some companion care (& hopefully get my brain to stop screaming “what shall I do for the best!?” 🤦🏻‍♀️🤷🏻‍♀️

 

[Kevinl]

Don't know how you do it, single mum to so years old and working full time.
I had to pack our youngest of to live with his big sister when he was 16, all too much for him to cope with let alone aged 9.
Caring is hard, I can't imagine what it must be like with a child so young. K

 

[Violet Jane]

@Purple rain 50, you won't be able to go on working if you move your mother in with you. If you work from home she will constantly interrupt you as she will feel anxious / won't have a concept of time / won't understand that you can't be disturbed.

It's very unlikely that she will be less clingy and less demanding if you move her in with you. Your life and that of your young son will revolve around her.

 

[Purple rain 50]

@Purple rain 50, you won't be able to go on working if you move your mother in with you. If you work from home she will constantly interrupt you as she will feel anxious / won't have a concept of time / won't understand that you can't be disturbed.

It's very unlikely that she will be less clingy and less demanding if you move her in with you. Your life and that of your young son will revolve around her.

Yes I think I realise that now - because I work from home, she thinks I can just drop everything anytime (I sort of can but have to make the time up). Things would be very different if I was office based!

She has no concept of how long she’s been like this, so mostly thinks I’m just there for the day as she feels a bit poorly.

Oh well, just keep putting one foot in front of other ☺️