Inter generational living… can’t decide what to do

[Zapx]

Hey everyone, so my parents aren’t particularly elderly; they’re both in their sixties. However, my DF has a recent Alzheimer’s diagnosis so this seemed like a good place to put this thread.

Family situation is that parents are currently carers for my disabled brother. Plan is (and has always been) that at some point brother would come and live with us. With my Dad’s new diagnosis they’re looking at relocating to where I currently live with my husband and young children, such that we can be on hand to offer my DM more support.

They’re struggling to find a house they like. Would it be a truly terrible idea to move in all together? I’m thinking that I’ll soon be living with DB anyway at some point, and if we were to pool the finances of two house sales we’d probably be able to get a pretty big place they would have room for all of us. I haven’t seen any with a dedicated annexe though…

Is this a dreadful idea? My DH is largely on board with the idea but he also extremely laid back! I’m not sure if I’d find it too much trying to look after everyone under one roof. Would love some thoughts! Thank you

Yes it’s a dreadful idea. You can help from a distance and back to a peaceful home at night.

It’s a terrible idea. It could be quite traumatising for your children to live with their grandparent as the dementia takes a hold. Their lives are already going to be hugely disrupted when their disabled uncle moves in.

Is this fair on your DH? Do you work? Who will do the caring of your DB? What happens when your DF gets worse?

Don't do it. Your Dad will end up wandering round at night, going into your kids bedrooms, maybe using their wardrobe to urinate, turning on the gas cooker etc. Alzheimer's becomes a horrendous disease as it progresses and a small sheltered housing/bungalow suited to his needs will be much safer.

Are you happy to take on DB longer term as that will also have a huge impact on your kids?

It can work, it can be a horrific disaster.
My friends mum was determined her mum wasn't going to a home after her alzheimer's diagnosis so once she was struggling took her in. They needed to take the door keys to bed with them after she wandered out in the wee hours of the morning - found by the police looking for her childhood friend's childhood home. After that she climbed out of her first floor bedroom window somehow managing not to injured herself and went to the neighbours and told them her parents had locked her in as they didn't approve of her young man. Then, while my friend's mum was hanging out the washing she decided to run a bath but went and sat back where she'd been and friend only realised when water came through the ceiling. After she put a plastic electric kettle on the gas hob while FM was stripping the beds she went into a home.
A work colleague took her father in but after he pushed her 13yo son down the stairs when he thought he was a mugger (final straw, far from the first violent incident) she realised it couldn't go on.
Yes, you might get the fantasy alzheimers patient who just sits quietly in the corner and bores everyone with the same 3 memories on a 10 minute cycle but the chances are you won't.

I was the child in this situation, agree it is a terrible idea.
Close by, but not on top of each other.

What level of care will your brother need? Can he start to spend time with you?

Thanks everyone, sounds like it prob isn’t something we should do. The kids will be affected enough as it is and so probably living together will be too much.

DB needs a lot of attention but essential “fits in” with our family life and the kids have grown up around him and get on very well. If we live close by we could certainly have him round more so I think I’ll aim for that. Thanks again!

If your DB will come to you eventually would him coming now and your parents moving to an extracare flat locally be possible?

That sounds like hell on earth to me and probably not the best solution for your brother or your young family.

Why can you your brother not work towards supported living? What happens if you die, does your brother end up with your husband and/or children? Would this be fair?

Living with an adult with Alzheimer's is generally terrible for children. They will feel neglected. They will have no safe space.

I grew up in a similar set up, minus the disabled brother/uncle and the elderly person was just frail rather than having dementia.

There is no way I’d do this to my own children! The entire set up ends up revolving around the needs of the elderly person. It ends up affecting anything you do as a family - days out, shopping, holidays, having friends over.

What happens to your brother if you become ill? Or as you age? Surely it would be better for him to have some kind of supported living place via social services, with you able to see him regularly?

I think that you need to re think this situation of you all moving in together. The parent with Alzheimer's will get worse over time and there care needs will grow.
My friend gave up there job because there mother could not be left on her own. They were physically and mentally exhausted and she still needed to go into a nursing home.
It was like minding an adult sized toddler. This was a lady of 5 f 3" and a size 10. I would imagine it would be worse if it was a big, tall man.

In your situation I would look into supported living that set up for elderly for both your mother and father near where you live.
I would also arrange an appointment with your own GP and tell them what your looking for with your parents. Explain to them as well that your looking for sheltered accommodation for your uncle and explain his need's.
Your GP should be able to advise and give you names and phone numbers to contact regarding all this.

If you can set up appropriate accommodation for your parents and uncle it would be better for you all. In sheltered accommodation your uncle would be living with other people like himself and have support when he go shopping ect. He would be bought places and made do thing with support.
Then your parents would have help when needed and your father could move into a nursing home when required.

The reality is that your married and have your own children. You may also be working PT or full time outside the home. You need to do what's best for you and your family now so that long term your not physically and mentally exhausted dealing with 2 and possibly 3 adults all with various care needs, hospital appointments ect.
This is not being selfish but it being realistic. Being able to go home after caring and hospital appointments at a later stage will be better for your own physical and mental health and for your own family also.

I would really caution against this.

I worked with older adults as a nurse and patients with dementia can be very unpredictable and sometimes physically aggressive or sexually inappropriate, as well as having issues with continence, and potentially doing dangerous things like leaving the gas on/taps running/doors open etc.
If he’s in his 60a then he’s likely to still be physically strong and therefore more challenging to manage if he does become agitated or aggressive.

If you have children and a disabled brother living there then this is unlikely to be safe and no-one is likely to have their needs met.
Being a carer will also really restrict what you can do. If he gets worse will you feel comfortable leaving your mum alone with him so you can go on holiday or on days out with the kids?
It is also likely to be very stressful, distressing and disruptive to your children/brother.

My honest advice would be to buy a property that can accommodate your brother (if you are committed to having him live with you, you could also consider supported living if having more independence would be the right thing for him and you).
But have your parents find a place nearby that is easily adapted to be accessible and safety-proofed.
Then if they can afford it have carers support them it is much easier to increase an existing care package than start one urgently in a crisis. It also helps him (and your mum) to get used to carers whilst he is still reasonably well. It also gives both you and your mum some respite, don’t underestimate how tough caring for someone with dementia can be.

I echo those who say don’t go down this road.I’ve got an adult brother with LDs. As he has got older his needs have got far more demanding and now needs one to one Care at all times. My mother had dementia too in her final years and although I was her carer she forgot who I was and was quite hostile to me. My life was put on hold for decades.

Not a good idea for all of the reasons above plus buying a home together might have implications for paying for care. I also think you/your family could explore your brother going into some sort of supported living if he wants as things are probably going to get tougher for your mum. They and he could live close to your family so you can still offer support.

I work in adult social work and would never in a million years recommend moving in with a parent with alzhiemers/dementia and especially with young children involved. The illness can progress quite rapidly and can be very unpredictable. It can involve the parent becoming violent, wandering and up all night. With young children involved too, it very quickly puts their welfare and safety at risk and as a parent your priority has to be your own children.

I obviously don't know anything about your brother but there's a world of difference between your children being close to him and the full time day to day care of him and living with him. What is the long plan for him if his care needs become too much? Will his needs take over those over your children? Is there any reason why he can't go into a supported living accommodation where you can still remain close to him but it doesn't impact on your own children's lives.

No way. My friend looked after her mother with Alzheimer's for years and years. It was horrendous, smearing, violent behaviour. Just no.

I agree with pps that your brother might be better served by living in supported accommodation. Is that something you could look into?