Bereaved Dad with Alzheimer’s - feeling guilty

[MiniMaxi]

Mum died unexpectedly in November, leaving my 80yo Dad who has Alzheimer’s. They had been supporting one another with their respective care needs, and now he’s lost the framework in which he was operating, he is incredibly anxious and wanting/needing company (as well as grieving as we all are).

We are organising carers for him who will attend 3h per day (initially 3dpw), but essentially he wants constant company / entertaining. I live 50 miles away, have a family and a full time job. Brother is round the corner and is in a similar situation, plus travels for work. Dad has a small number of friends (he’s lost touch with many), one of whom he sees once a week and a couple of others more ad hoc.

Since Mum died we have been giving Dad as much company as possible - brother has had him round for dinner most nights, and he’s stayed with us for about 14 nights across a couple of visits. This has only been possible as it’s been December (quiet at work) followed by Xmas holidays. We are now facing the reality of being too busy to constantly spend time with him, plus brother is out of the country for the next 10 days. Dad keeps saying that really he’d rather just stay with us but it’s not possible - we don’t have enough space (nor does brother) plus we aren’t going to be available to provide the regular catering that he needs and the constant entertainment he seems to expect (he complained about needing to sit and watch TV for periods of time when he was with us at Xmas but there’s a limit to what we can do with him due to mobility issues plus Alzheimer’s).

I am feeling constantly guilty while also knowing we’ve been doing the most we can in the past six weeks to make sure he’s spending time with family. If anyone has similar experiences to share of how they’ve made this work / coped with having a lonely elderly parent I’d appreciate some perspectives or suggestions as to how to make this easier on him and manageable for us. (NB us or brother living with him is not an option)

Mine was widowed younger than this but ultimately you have to be cruel to be kind. I could have stayed at the level of having every meal with her and never really being away but that wasn’t sustainable for me longterm (I would never have met my partner, had children or progressed my career!) or for her (what would have happened if I’d had an accident, lost my job etc).

They don’t see the effort being put in to provide all the extra support and interaction, just that they like it and want more of it. But you have to set boundaries, otherwise it isn’t sustainable. Mine started going to a bereavement group and met others in a similar situation. Plus lunch club type events. It spread the load so it wasn’t all on me. I gradually changed how much I was doing, from seeing her every day, to once a week. Then when I moved further away once or twice a month.

A dose of reality also helped. Mine came to stay one time when we were both working. Instead of the weekend totally focussed around her needs (which wasn’t sustainable beyond a weekend,
but she’d never have seen that) she got to sit in an empty house whilst we worked, scurried around doing the nursery run, then ate far later than she wanted because that was what it was like after doing children’s bedtime. None of that was deliberate, just the reality of our lives most of the time!

Would your dad be better off thinking about moving to assisted living or residential care? He would have company all the time then.

Thanks @EmotionalBlackmail that’s really helpful, and as much as I hate to say it, I think he will need to face up to the reality that he will sometimes be lonely. The Alzheimer’s makes it worse of course because he can’t independently go and meet new people, but hopefully the carer can help take him to stuff.

You’re totally right re not seeing the effort / not understanding that the full focus is an occasional or short term thing. Dad seemed surprised when we pointed out that we’re both back to work at the end of this week, so wouldn’t just “be around” to keep him company, and also was a bit surprised that we had plans over new year so couldn’t just host him for an extra week or more while my brother is away. Again I’m hoping the Alzheimer’s doesn’t mean I have to repeatedly break this news to him.

Anyway, thanks for your post. I have seen stuff recently on Mumsnet where posters make the OP feel bad for not having their recently bereaved parent to stay for 2 weeks plus at Christmas - but it just wouldn’t work for us. My son is 9 and needs activities, it’s not fair if he spends his whole holiday indoors and we can’t just leave Dad in our house all day with nothing to do…

It's time to look for a long term solution, if he can't live alone then depending on his level of need you're looking at anything from assisted living to full time care in a residential or nursing setting. You'll all need adult social care in his area to do a care assessment (unless he would be fully self funded) unfortunately Alzheimer's only gets worse so start putting things in place to cover what you and your brother can't do.

What a sad situation for you all. Bereavement is very disorienting without adding Alzheimers into the mix.

To be honest you can only do what you can do. You cannot split yourself in two.

Have you looked at Alzheimers.co.uk? - they won't have a magic wand but could advise.

If he looks at a move, it would be best to go straight for residential care, as if he goes to assisted living he will finish up needing residential after a while and having to move twice.

I got some really good advice on here last year, or maybe earlier. Someone pointed out that if my “D”M had only ever experienced weekends when we focussed solely on her, then that was what she considered normal,
and she’d have no idea of the sacrifices being made to enable that to happen.

Work out how much you can do, sustainably. What is fair on you, and your children? You need to be able to have a life too.

If he wants constant companionship then that’s what residential care is for.

Oh, and mine thought I should just give up work and focus on her needs. No thought for the practicalities of paying my mortgage or providing for her grandchildren!

Gosh @MiniMaxi I feel for you so much. We had a very tough year with a parent who was in a similar situation to yours but became end of life because of an additional illness they had for a very long time.

The guilt eats you alive, we had no idea how long it would go on for and quite literally the parent would have had all of their children quit their jobs and care for her full time and all the while she had a sibling abroad advocating for the same level of input. You do end up feeling so, so guilty.

I think the key is learning to deal with guilt and setting reasonable limits which the unreasonable who surround you will simply not agree with. It is very stressful but you are absolutely not alone as loads of people who’ve experienced it get it.

@MiniMaxisadly, you have to ditch the guilt. You cannot replace the companionship of a life partner, it's that simple. My late DM was similar, lots of visitors, carer visits and family dropping in as much as possible, and it wasn't enough for her. Took us a while to realise and accept it as it's really hard when they phone you complaining about being lonely when a carer or visitor left minutes earlier. I find myself as the widow now and understand more, but I'm young enough to understand that there's a limit to what other people can do.

I have seen stuff recently on Mumsnet where posters make the OP feel bad for not having their recently bereaved parent to stay for 2 weeks plus at Christmas

That thread is a completely different scenario with no Alzheimers in the mix. It is a one-off scenario of a few days rather than your situation where you are needing to look at long term planning. You have done all the right and kind things in the short term by picking up the needs in the immediate aftermath of your mother's death. You are now needing to look to the future and how his needs can be accommodated round your normal everyday lives going forward.

Does your father still have a sufficient degree of mental capacity to live on his own? Do you feel he is safe? Are his neighbours safe? - I was a social worker and was sometimes more worried about the adjoining neighbours when fire risk came into it.

Have the medics assessed him as being safe on his own? Is he getting any input in terms of meds or day care/groups etc.?

I am so sorry that you are having to deal with this - it is a scenario I know well. And all this when grieving the loss of your Mum, for which I send condolences.

I would really consider a residential facility - he could have constant companionship and entertainment, and with Alzheimer's it is sadly only a matter of time anyway. There are some really great ones around these days, my loved one has been in a couple that are closer to four star hotels, with amazing activities and trips, as much as they're up for doing.

Thanks all for your comments, I’m out for a few hours but will read properly and reply tonight.

Sending sympathy and solidarity OP. I'm in a similar position with a recently bereaved parent who now has dementia. I'm not sure if it's the dementia, grief or a combination of the two but my mum has become entirely self centred. Just a few years ago I remember her complaining about a friend who made unreasonable demands on her daughter when she was widowed. Mum's expectations of me are now far in excess of what her friend was asking for.
In my case I dropped everything to spend extended periods of time with her when Dad was very ill and then immediately after his death so I think now in her mind I am clearly able to do that so I am unkind if I won't agree to do it now. I've found it helped a bit to let her see that I have other commitments and to spell out for her the arrangements I am having to make to be with her. At first I didn't want her to feel bad about how difficult things were for me to I played down my own feelings/stress/commitments but I realise that was a mistake as now she can't understand why there was no problem taking a day off work 6 months ago but now it's difficult.
Unfortunately the guilt does not go away but you really do need to decide what you can sustainably do and set boundaries accordingly. Some people will disagree with your boundaries but ask yourself if they have strong views on what should be done are they willing to step in? It's very easy to say 'I'd never let my parent go in to a home' when you are not trying to juggle work and children plus being on call 24/7 to deal with ever increasing needs/demands from an elderly parent who is no longer really able to manage their own life. In my case it's taken me a while to realise that doing more than I am willing to do long term is just masking the real issues and allowing mum (and other family members) to avoid dealing with them.
I can recommend looking up the 'Cockroach cafe' threads on the elderly parents board. There are lots of posters there in a similar position who understand what it's like.

Thanks to those who’ve suggested residential care. I think we are probably heading that way eventually (or live in carer potentially) but I don’t think any of us are ready to make that shift yet. Not least as we’d have to sell his house to fund it (house worth quite a bit, though he has little in the bank itself) - and the house is FULL of stuff that would need sorting out first. Like, it would take me and my brother at least a month of full time sorting to identify what needs to be kept and what can go. I don’t know how long we could fund residential care while that was done but also neither of us can take an extended period of time off to do it. We’re a bit snookered as far as the house is concerned… but obviously will have to be done at some point.

Excellent point about not bothering with assisted living first (to avoid the double move), thanks.

Thank you - I think this is the only solution really: to set boundaries and stick to them.

Luckily my brother largely agrees … unless my boundaries mean he has to do more than he can cope with, of course. But for now we are on the same page.

I feel awful about it, but what can I do? I work full time, we can’t afford for me to quit my job (I also wouldn’t want to), have a 9yo son who needs an available Mum, and a life of my own…

Thanks - yes it was hard when he called today, having just spent 6 days with us, to say he didn’t have any plans today and asked who he could arrange to see…

You’re right. Nothing will ever be the same as having Mum at home, and he’s lost his purpose really as the past three years (when she had various health issues) he spent a lot of time doing their shopping, cooking, etc. But she did all the logistics and planning - so he now can’t figure out what to buy for himself, or how to cook it…

Thanks so much for the condolences, it’s been awful for me as well tbh as it was unexpected and there are a lot of “what ifs” - so I feel doubly bad when I see Dad as I feel like I have to shoulder his grief as well as my own. But then feel heartless for not wanting to have to do that!

Good question about safety. I think he is relatively safe and he isn’t currently cooking for himself so that reduces the risk to neighbours. (It’s also an electric cooker which is safer if he does try to use it). But definitely worth bearing in mind.

We haven’t had the council assessment yet as we went straight to a private home care service to speed things up. But we do need to do that.

(also: thanks for pointing out that the other thread I referred to was a totally different scenario, you’re right - and what’s so daunting about our situation is that it’s an every day requirement, as you say)

Ref selling house. If you think he will need LA funding for residential care then they can fund pending the house sale by putting a legal charge in the property which allows them to recoup the money. But .... they will have to assess him as needing residential care according to their criteria. If they think he could manage safely with a package of care at home they will not fund residential.
Do go to Age UK website ... they have loads of info on all this stuff.

Sorry you’re in the same boat - and sorry for your loss, too. Sending solidarity your way too. I’m glad I started this thread as it’s a relief to hear from people in similar situations that it’s ok to be “selfish” and not just drop everything… (I know it’s not being selfish but it’s how it feels when there’s a sudden need to support a parent). Will check out the cockroach cafe. Ta.

What about booking day centre visits?

Because of the Alzheimers your DF no longer has the cognitive ability to understand that you have jobs to do and lives to live.He anchors on the things he knows - asking when he is going to see you again. All you can do is visit when you can and be prepared by looking at care homes, ensuring you can speak to his doctor and having power of attorney set in place.
Its horrible because you hate to let down a parent but your DF in sound mind would know you need to earn a living and look after your DCs.

The reality of ageing for many unfortunately. Sadly, the wants of someone towards the end of life don’t trump those of others in the prime of theirs. Set up POA if you haven’t got it already. MIL lasted six weeks at home after FIL died. Six long fraught weeks. The time spent every single weekend in the subsequent six months clearing, skipping and tipping the house contents in preparation for sale was the cherry on top.
Do not entertain the idea of him staying with you. Everyone I know that’s gone down that road has ended up on antidepressants.

I would suggest in this order:-

Day centre
Supported living like Abbeyfield
Care home

Sorry to hear about your Mum but now she has gone, your Dad’s deficits will become more obvious. It’s very tough trying to support someone at home with dementia. It’s all well and good having carers going in but there is only so much they can and will do. There’s also the safety aspect of living alone as a vulnerable person.

I would make a start of looking at care homes now so you can line one up when you feel the time is right. There’s nothing worse than being in a crisis situation and scrambling around trying to find somewhere. They are so different. It doesn’t have to be one foot in the grave.

I think this could be an option but not sure how the transport works, if he can’t get there independently. Would the carer take him or do they pick up and drop off?