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)

Thanks, yes this makes a lot of sense. We already have POA thankfully. It’s the “visit when you can” bit that I think I’ll find tricky - as of course I COULD visit most weekends but at the expense of everything else we do in our normal lives. Before Mum died we would spend a weekend with them every 5-6 weeks ish, I kept meaning to do more but this was what worked easily for us - obviously now I wish we’d seen more of them then. I can see him more than that but what’s realistic? I think there’ll be an unspoken “every other weekend” expectation … plus potentially staying a night during the week. Which all feels a bit much but I don’t want to leave my brother in the lurch either.

Oh 100%. In a way (again, I feel a bitch for saying it), I’m relieved our house is too small and our location (different city) means we can’t move into his… I know some people do manage to care for their elderly parents with dementia but I don’t think it would be fair on my own family given our specific circumstances.

This is good advice, thank you. Best to be prepared - we very much have not been in the aftermath of Mum’s death, in terms of setting stuff up for him even in the short term. Because it was unexpected, there was no time to have the “how will we look after Dad?” conversation until it was a crisis.

Yes, ring Age UK for advice about ways of accessing it, but probably through social services in his area. Discuss with them his need for transport. There may also be volunteer befriending services- not paid for care but someone who’ll sit and do a jigsaw, take him for a walk to a garden centre etc.

MiL has a befriender. She could do with going to a day centre but I hadn’t thought of it, so I’m glad for this thread making me think about it!

It’s such a responsibility, isn’t it? DM is managing at the moment but is rapidly getting to the stage of being unable to get out and about. She’s struggling to process things, learn new things.

Just to chip in ..... uprooting and moving even once for someone with dementia is hard and often precipitates a bit of an expected decline, so a double move (home to sheltered, then sheltered to residential) might not be the best option. Sometimes it is best to put in a comprehensive care package at home for as long as possible then move straight to residential as needed.
It all depends on the individual.

Do not feel guilty about not bringing him to live at yours. Removing him from familiar surroundings will make his Alzheimers worse and if you think you can’t do it, then you definitely should not.

Another wee piece of advice, it’s wonderful you and your DB are working together on this. As things become harder as unfortunately they will, you want to keep and protect that relationship no matter what happens, just remember everyone- including your DF - are doing their best. You will all get used to accepting that good enough for your DF may look far from how you would like him to live, but it’s down to basics of is he warm enough, is he eating and drinking enough.

Definitely get social services involved so your DF is on their radar. He should be eligible for attendance allowance if he isn’t already claiming it. The form is tough but it’s not means tested so it’s worth doing with him.

@MiniMaxi My DM didn’t have Alzheimer’s, but when she died 18 months ago, her care home fees were £5,600 a month. With dementia they might well be more. You need to crack on and sort out the house if he will need residential care and had to pay for it. A little bit every so often but I’m not sure you can put it off indefinitely. DM had savings so we didn’t touch the house money as she died fairly quickly but with no savings you are going to have to plan the future. Your caring costs must be high too. I assume he has a pension paying for this but you need to do some maths for residential care.

I’d also recommend getting a handle on his finances. Finding out details of his bank accounts and bills.

If he’ll let you, get third party access to his bank accounts if you can. Be warned that using Lasting Power of Attorney to access accounts is an absolute ballache so try to get the finances simplified now if you can.

Very difficult I know because he probably thinks he’s still fine to manage independently but I found all of this incredibly stressful and difficult on top of dealing with care stuff.

I moved in with bereaved dad who had Alzheimer’s, for 18 months before he went into care, it nearly broke me, no help from other family members, I genuinely wanted one of us to die, feel so guilty now, worst time of my life, totally heartbreaking and soul destroying

Thank you, that’s good advice. We definitely need to prioritise what matters most, and to respect one another’s needs to have freedom as well as a responsibility to Dad.

Totally agree on the different environment - he’s more capable at his own home than at ours, for example.

Thanks, actually this is somewhat in hand as my brother sorted it out after Mum had a stroke three years ago - she lost the ability to properly manage their finances so he now has access to their accounts (I don’t which is a pain but some banks only let one other person access them).

Sorry to hear this - hope things are easier for you now.

This is my absolute fear. It’s horrible as I have to watch him and DM sinking gradually into what I would say are almost unacceptable living conditions because apparently DF has capacity. It’s either that or sacrifice my 55 year old life for his 92 year old one. Thankfully they have money so I “just” have to wait until social services deem him incapable of living at home and then force him into a nursing home. Deep joy.
Their cleaner innocently asked if I planned to move in with them and then revealed she had a nervous breakdown after her DF died because she had done that.

Sorry OP perhaps not helpful, but unfortunately you have to get used to feeling guilty as the alternative is much worse.

This is all helpful, thank you, sorry you’re in a similar boat.

My parents were living in terrible conditions as both had hoarding tendencies and neither had capacity any more to tidy up (Mum used to, before her stroke a few years ago). They refused a cleaner after one stole from them. The really sad thing is it in some ways reduced the amount of time we spent with them as it was so exhausting to go for the weekend, tidy up, clean, throw out all the old food from the fridge, buy new food, cook, etc etc - while also doing some nice family stuff for our own sake and so our son didn’t go crazy sitting around their house.

When Mum died my brother and his wife (who are local) went into action mode and cleaned and tidying the main living areas to make it possible for him to have a carer - so it’s a nicer place for him now at least.

Wishing you all the best for your situation.

I don’t think there is anyone who has been on this trajectory hasn’t felt they have failed. It’s so very difficult to get it right for elderly parents and themselves simultaneously.

If you are considering a care home at some point in the future, a good route in can be day care or respite care. Allows you to try before you buy and isn’t as scarily final for the parent as a permanent move.

@MiniMaxi It’s easier for one person to have LPA. Make sure you have the health one too. A home will require this.

I think you have to see how the carer goes and be prepared for every day visits from them. It took us many phone calls to get 3 hours a week.

SS never came near my DM by the way and never assessed her. I arranged, with advice from the hospital, for a care home. She was 99 when she went to the care home and had been in hospital twice before that and was clearly getting frail. I asked for a home assessment when she was 98 and SS refused. They aren’t interested if you have savings. DM never had a home assessment. Once they know you exist, you are on your own. I did have an idiot social worker phone me to say they would offer care 4 times a day after the hospital told me she needed a care home. SS believed they would pay for the home, for some reason. DM always says she was poor! I asked why SS views didn’t correspond with the professional hospital view, and she said they did. So be aware of lying Social workers basing decisions on money and not need. Hope you aren’t in Bucks. Good luck.

Social workers are in a horrible situation. I left after 25 years to pursue a new career as I felt I had become a financial gatekeeper for the LA - not what I went into SW for and negated years of professional skills and job satisfaction.

SSD should assess when someone needs residential care but has not yet sold their property and does not have savings - they will decide if residential is needed by their criteria and if they can fund during house sale - after which the person will become self-funding and will pay back what the LA has shelled out during the sale process.

It is a bit of a minefield as the legislation has developed piecemeal and is also hedged round by health funding criteria.

I cannot recommend Age UK website too highly - they summarise this all clearly for those trying to navigate this labyrinth.

With regards to funding. As others have said a 'charge' can be put on the property so that it effectively gets sold later. Contact the adult social care finance department at your dad's local authority for full information on how to do this or ask the care homes you are looking at.
My situation was slightly different as my mum hasn't died. She was placed in a care home in September 2024 due to advanced dementia causing her to threaten my dad with physical harm. She then started physically attacking him. He'd been disabled physically for over 50 years and her brain decided she hated him.
So, that then left dad alone in a 4 bedroom house (social housing so no money as such) He was placed on 4 care visits a day and offered day centre etc, which he declined. My sister ran herself wragged trying to keep him settled, happy and where he supposedly wanted to be. He definifely had full capacity and there was no way he was going anywhere! Crisis hit, he had a fall overnight and despite an extensive care package, care alarm, everything, he fractured his hip. They operated and he developed post operative delirium. He never recovered to his previous 'baseline' and died at the end of September after some pretty horrific hospital admissions and deterioration.
We cleared his house between April and September. I won't lie, it was gruelling, heartbreaking, neither parent was able to give an opinion on anything and they'd hoarded for 65 years in the same house. My sister was diagnosed with cancer, my husband and I were the only ones 'able' to do it.
My plea to anyone? Ditch the guilt, better to make plans a bit too early than wait for the inevitable shit to hit the fan. Dementia is wicked, it doesn't improve, there is no time line.
I'm so sorry your mum died, the grief is unreal. But, you are not responsible for your dad's life and wellbeing. My mum has been in care for over 18 months. She doesn't remember my dad has died. She's well looked after and doesn't make herself angry anymore because her brain isn't constantly trying to work out what she 'should' be doing or behaving like. I can go and see her , but I'm her daughter, not her unpaid carer. I don't have to process the days when her brain decides I'm a whore or other such colourful language. I can just run my life how it needs to run. Ditch the guilt

Thanks @Lightuptheroom , that sounds so hard. I’m sorry for the loss of your Dad and the situation with your Mum.

@MiniMaxi my DM had an alarm to press if she fell. She never used it when she needed to. Somehow they just don’t think about it. We all want parents to be safe and do what we can, but some measures seem useless on reflection! Nothing beats someone checking up daily and I’d get that sorted out.