How to manage my dad ... advice needed.

[CharlieandLolaCat]

My DM has dementia. She was diagnosed 5 years ago but had symptoms 5 yrs before that. My DF has an enormous sense of duty and responsibility but can't always see what is in front of him.

2 years ago we all went for a weekend away to York, my parents, my then 4 yr old and me and it was horrendous. I didn't realise how bad it had got, DM needed constant support showering, getting dressed, toileting etc and I had to sit my DF down and tell him he had to get help.

They have now had a carer who comes in 35 hours per week - 6 mornings and then the odd day here and there. DF employs her directly after a great deal of trial and error with agencies - we are fortunate in that they have plenty of money (not boasting, just trying to be clear that money is not the issue).

Despite the carer things are deteriorating. DM is rarely lucid, often angry, frequently violent (although she's a relatively frail 76 yr old), won't/can't get out of bed, won't/can't eat her food etc. On the 7th day dad can't get her up on his own so one of me or my sisters needs to go and do that. One sister lives in the village but my other sister and I live half an hour away so we drove an hours round trip, me with my now 6 yr old DS (I am a single parent) to get her up, make sure she is dressed and changed and had breakfast. I'll be honest. I resent it.

We found a great care home in Jan/Feb and I think we had persuaded DF this was the right thing to do. That he wasn't coping, quality of life for both of them was non existent, he ignores her, she isn't stimulated but then obviously we went into lockdown. Cue lots of self-congratulatory comments about how he'd clearly done the right thing etc etc.

Throughout lockdown mum has become increasingly frail. She frequently zones out and collapses but is now also struggling with their house. It is an old house with steps literally everywhere and where you do have rooms on the same floor there are inch high thresholds and stone floors downstairs. You couldn't put in a stanna stairlift, it just wouldn't work. It is a death trap.

DM fell last Friday night, DF was helping her down some stairs, turned away momentarily and that was that. Paramedics were called, xrays etc . Thankfully nothing broken but steristrips on face and battered and bruised. Saturday she fell again. This time into a bush. DF texted the three of us and told us he'd decided to put DM into the home.

We all tell him this is the right thing to do, I am there Sunday morning getting her out of bed, we had a good chat, he says he can't see another way etc etc. The carer then comes in on Monday morning who clearly has a vested interest, the care home say she'll have to self isolate when she goes in, and by Wednesday he's changed his mind.

I am going there tonight to spend some time with them and hopefully talk to him about how we move forward. He is just too close to this to make rational decisions and doesn't understand that he's going to kill her. I have looked at the safeguarding guidelines and I don't think he'd fall foul of them, he is meeting her needs, but this is just horrendous. Not least the fact that he is only able to do this with our complicity in helping her get her up. But if we don't help we isolate him further.

We all used to be close but I now hate going there. My DS hates going there. I want to be her daughter not her carer, see my DF in a setting that isn't their house. And I am coming to loathe the carer. Any suggestions on approach?

Oh, wow, sorry that was long ...

Bless you that sounds incredibly tough.

I'm in a similar situation with my parents except it's dad that is frail and bed ridden (no dementia but ad hoc confusion and just generally deteriorating.

Anyway.

He's going into a home for 2 weeks respite on Monday. He has had to have a Covid test, and the home are happy for us to visit, wearing masks with him in his room or out in the garden.

I asked about the isolating for two weeks thing, and they were happy to do things on a case by case basis. They had had a patient with dementia transfer to them during in lockdown who was really distressed without seeing his sister regularly as he was starting to forget her, so they made arrangements accordingly (she came in, disinfected and masked and was taken straight to his room without coming into contact with others).

Have you spoken directly to the home about their rules? They may be more flexible than you expect and it's possible the carer is just talking generically.

I'd possibly be inclined to call their agency and ask them to have a quiet word about not scaremongering or interfering with family decisions too tbh.

Best of luck. I think it's harder work dealing with two elderly parents than one, even if one is , on paper, quite capable.

Oh bless you.
Your Dad feels guilty, but you can't all go on like that.

If he doesn't agree, and he probably won't, I wonder if it's worth contacting SS or their GP to try and talk to him? Or look into a live in carer?

The hardest bit is deciding the parent has to go into the home- believe me. But that will be when you start sleeping at night again, not worried about what she's up to and the care your Dad is really no longer able to give her.

Carehomes can be amazing. My mum's was. Stimulating, activities specific to dementia sufferers, pet therapy, a toddler playgroup went in once a week, a choir, the whole kit and kaboodle. My mum was there for four years before she passed away and despite the dementia which continued to ravage, she was happy. And cared for, and well fed and clean.

I'm not saying your Dad isn't doing all of that too, but it will get harder as the illness progresses.

Thanks both. And @ScorpioSphinxInACalicoDress he definitely isn't doing all of that. She is in incontinence pants now and when the carer leaves he is not cleaning her properly. I will be spending all night taking her to the loo.

I have just heard that he has moved their bed downstairs with the help of my nephews. I suspect he thinks this is a permanent solution. It isn't. It means she'll be restricted to one room with a slope outside of the door down to the downstairs loo (step up into it) and the utility room). Ridiculous. I don't think SS would be interested. But he may listen to the GP. One sister uses the same practice so I will ask her to speak to her.

Unfortunately no one will take her for respite that we've found because she's so bloody difficult and I think they think she's just not worth the hassle for 2-3 weeks. Slightly concerned the home we've found will now have written them off as DF keeps on flip flopping. And they'd still need to assess her ... is just so depressing.

Is he able to talk to you, or to anyone else, about what's stopping him? Guilt is one thing, but that's not likely to be the main thing.

She is his wife of many years - however changed she is he will still love her, and will miss her. He may be worried about being lonely, feel that once he's no longer her carer that there is no meaning in his life, feel that once she's gone he will lose regular contact with you. And he may feel very selfish for feeling all these things.

Any chance you can probe these and make some suggestions. How can you make sure his life is full, that he is still playing a meaningful role in her life? Could he move in with her for a couple of weeks to isolate with her (if money is no object)? Can you go and visit him more often? etc etc etc.

Social services absolutely would be interested it's their job to support in these situations.

The level of dementia she has would also probably mean that she may be eligible for some or all of her care to be paid for by the NHS.

They definitely need a formal care act assessment and the social worker can back you up if they feel she would be best in residential care.

Also, if your mum hasn't granted your dad lasting power of attorney for health and welfare it's not actually his decision to make, officially it's the states...

This is very tough, I feel your pain.

In our case, we found the GP very sympathetic to the nuances of pride and love which made this such a difficult situation and DF would comply with GP (while entirely ignoring our identical suggestions).

We were also really impressed by the quality of care in the home. Good luck.