Young(ish) siblings and dad's early onset dementia

[bananabella]

Hi - this is my first post, and I wondered if anyone had any thoughts, or knew about any services that might help with my family's situation.

I'm 28 and have just finished a PhD - I've lived in my current city for 4 yrs with my partner. My brother is 30 and has always lived with my dad (it's just me, my brother, and my dad), which is several hours away. My brother lived at home when he was at uni and his partner lives nearby. He works part-time in our home town and he wants to have a career in sport.

The Christmas before last my dad was diagnosed with early onset dementia. I think I'm right in saying that it's 'posterior cortical atrophy' - he struggles with hand-eye coordination, spatial awareness, and his sight. His memory is still very good, but he struggles to get dressed, can't cook, is unsteady on his feet and can get lost when he's out and about.

We were so worried how quickly he might deteriorate when we first got the diagnosis, but it's only his sight/spatial awareness that has got worse. He's still very independent and although he gets bored during the day he has an active social life - mainly going to the pub and drinking with his friends. We hope that this can continue for a long while!

But things have come to a head recently: my brother has been looking after my dad for the last year now. He has to stay in in the evenings when my dad goes to the pub to make sure he gets back okay - my dad struggles with the key/door even when it's daylight and he's sober! My brother also helps him dress, sorts out food, takes him to his hospital appointments etc. I visit home about once a month for a long weekend, and whenever my brother is away for the weekend/on holiday. Because I do research/teach at a uni I am quite flexible.

But it turns out my brother had assumed I'd move back home after I finished my PhD, and I think he now feels it's my turn to look after dad more - or at least 50% of the time. He isn't happy in his job, which he's always seen as a stop gap, and wants the freedom to move about and progress in a career in sport.

But I don't want to move back home: I've not lived there for 10 years, and my friends have all moved away as well. My partner and I couldn't both live in my dad's house, and there aren't jobs for us there. And I don't want to ask my partner to move from a place we love and compromise his career (he's just finished his PhD too).

I think my brother wants us both to live at home so we can share the responsibilities and both be able to have a degree of freedom. He wants my dad to keep doing everything he wants to (eg. pub trips) as long as he can, and not to think that he's burdening us. But I don't want to move home and be miserable for an indefinite number of years. And this of course makes me feel incredibly selfish!

I've suggested the three of us sit down and talk about it all openly. I know it's ridiculous that we've not done so already, but I'm also sure anyone reading this will understand why we've put it off. My brother is resistant to talking to dad about it - perhaps because he doesn't want to hurt his pride, but also because he doesn't want him to know the changes we're having to make to look after him, because he shouldn't have to feel guilty about his condition!

To anyone who's kindly read this whole post: is there any information/support/ideas with which I could go to this conversation with?

 

[karaokePete]

Hello @bananabella, welcome to TP. You will find this a friendly, informative and supportive place.
I know that things like carers/day centres can often be arranged but I don't know how that could be done without your dad being aware. Someone with experience of such a situation may come along to advise.
In the meantime would it help to talk to the experts on the helpline? The details are:-

National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.

Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

 

[love.dad.but..]

I can understand your brother wanting to resume a life for him and also understand why you would not want to take over after PhD. As you say it is now time for a sit round the table frank conversation. There are ways If you think your dad is still at a stage where he can be left on his own but with extra outside support to get by and he may accept carers to come and help him with personal care. If he doesn't cook you could arrange for meals to be delivered and carers could help with that. If you spoke candidly with a kind close pub friend maybe they would see him home safely through the door. Has he had a SS care assessment yet? Making any care or other provision probably depends on what he will discuss and accept plus if he is aware of his changing condition.Although quite concerning and common with dementia is that he is starting to get lost and is unsteady on his feet if left to live alone that may prove more of a stumbling block

 

[jugglingmum]

I suspect that there is nothing to keep everyone happy here.

It sounds like your brother has taken on an awful lot, having to dress someone every day is a big chore and only going to become more burdensome. If he is sorting out your dad's food that is another big chore, and day after day is much worse than 3 days of a weekend.

It is only just over a year since your dad was diagnosed, so your brother hasn't been doing this for a long long time, but it sounds like he just fell into it and made assumptions.

On the other hand, you are both young, and just starting out in life, and if you don't follow career paths now it might be too late afterwards.

When crisis hit and I realised my mum had dementia I also realised I couldn't have her live with me, I wouldn't want to be sorting out her clothes every day etc etc, some people do, but it is not everyone's choice. No one can be made to care for another adult.

He wants my dad to keep doing everything he wants to (eg. pub trips) as long as he can, and not to think that he's burdening us.

Unfortunately it isn't possible for your dad to do everything he wants and not burden you, whilst your dad enjoys his pub trips it is a big cost to your brother, but not one that you need to take on.

Does your dad have enough understanding of his limitations to be part of the discussion?

Another thing to bear in mind with dementia is today is the best they are ever going to be, and deterioration is inevitable, and there is no way to forsee the rate of deterioration.

As love.dad.but.. points out, getting lost and unsteadiness ring massive alarm bells, and there will come a time, maybe quite soon, where your dad can't go out without supervision, which he may not understand or like. This for many is the crisis point which triggers a care home, regardless of a person's other abilities.

Maybe you need to sit down and have a heart to heart with your brother first, before involving your dad, if your dad can't live on his own unsupported maybe it is time for other arrangements to be put in place.

 

[Beate]

There is one thing both of you have to remember: no person can be forced to look after another. Duty of care lies with the state, not with an individual. When your brother took on your father's care, he made a choice. Just because he did does not mean you have to do the same, and he should not assume that. Of course he'll see it differently, but he should have made this much clearer from the outset, and even then you wouldn't have had to agree. You're both so young, you are only starting out in life with your careers and relationships, and neither of you should have to give that up. It's noble to want to allow your Dad his independence, but not at your expense, and if your Dad knew how much he's restricting your lives, he would not want that for you.

So, sit down with your brother without your father and discuss the situation, but don't make it into an "either you or me" situation. There are other solutions, and help is available through Adult Social Services. If your brother has never asked for a needs assessment for Dad and a carers assessment for himself, now is the time. There are things like Day Care Centres, carers, sitters, respite, telecare and OT assessments, and he should ask for whatever could make this caring situation better - for all of you.

 

[Sammyjo1]

Hi Bananabella. I am so sorry to hear about your father's diagnosis and the difficult situation it has put you in. My husband was diagnosed with Alzheimers about 4 years ago and then it became clear that he had PCA. As with your father, his main issues are around the visual/spatial problems and he is still very aware cognitively. He is unable to go out by himself and even finds it difficult to navigate his way around our apartment. I am able to leave him on his own for a few hours but would not leave him overnight. I have found a small local care agency who send someone (the same person each time) round once a week to take him out for walks and support from them will increase as it becomes necessary.

There are very good forums on Facebook for PCA - search under Posterior Cortical Atrophy and you might find it useful to ask questions on there as people are more experienced with this particular form of the disease. There is also a Rare Dementia Support Group which has a lot of information http://www.raredementiasupport.org/

You don't say how open your father is to discussions around his illness. It may be that he would be horrified at the thought of you disrupting your life to look after him. It may be possible to get local care provided.

I don't think you are coming across as selfish at all. It's a shame that your brother has these expectations of what he wants you to do as it is his expectations which may be unrealistic.

I wish you luck and strength in resolving this tricky situation. If you want to talk more about supporting someone with PCA, do feel free to PM me and I can send you my email address.

 

[Rich PCA Carer]

Hi Bananabella, I don’t have much to add to the responses you have already had. My wife has PCA, diagnosed in July 2015. Like your father her main issues are visual and spatial. Her short term memory and cognitive functioning remain pretty good, so she is involved in all decisions that affect her. You will know whether your father is open to and capable of such discussions.

One point which might complicate matters is the funding for your father’s care. If he is sole owner of the house and doesn’t have considerable other funds, it may well have to be sold to finance his care. It will only be disregarded from the financial assessment if your brother is disabled.

 

[mattyoj89]

Hello @bananabella . I have worked at dementia day centres for the last ten years. All I can say is that it is never easy to talk about additional care or going to a day centre. Every client that currently attends our day centre has each shown that reluctance to attend. It is never easy, it can just take a great deal of time. You will get there in the end. Best wishes.

 

[bananabella]

@karaokePete @love.dad.but.. @jugglingmum @Beate @Sammyjo1 @Rich PCA Carer @mattyoj89 - thanks so much to you all for taking the time to reply to my message. I know there's no real dream solution to the situation, but just hearing your thoughts and responses has made me feel much more supported and armed to go forward and discuss possible ways forward with my brother, and then with my dad.