Finding it hard to keep everything going- sorry this is long

[whataboutbob]

I think it's been a year or 18 months since i started posting in Elderly Ps, but it feels like 5 years. Dad has been getting steadily more confused, his memory is shocking he can't remember my previous visits even if they were 2 days ago, has forgotten most relatives, I could go on. I work 4 days a week, have 2 kids, a home to run and visit Dad once a week (2.5 hours away on public transport). Last week he turned up in london, i was called by the transport police as he was found wandering and confused around Charing X (again), had to bring him to my home and then back to his the next day, taking a day off work. At this point the HOme Treatment Team suggested a period of respite/ escalating to full time care (which they said they felt he needed). This was more precipitous than I'd anticipated but I agreed and we all went along to a dementia specialist home (one of the better ones in the area, according to dad's GP). After a reasonably good hour or so of Dad being given a meal, chating with staff, when it was time for everyone to leave he got extremely agitated, abusive, shouting and demanding to be brought home. The manageress said she did not think the home would be able to cope, so off we all trooped again, taking Dad home.
Yesterday went back there, and Dad again talked of coming to London, just getting on the train and going to visit his old college (he would never be able to find it). He wants to buy a car, go to france, go to Spain etc etc.
None of these things can he do. I have in the past 5 years taken him on numerous holidays at home and abroad (as I could see the dementia looming), but am now somewhat burnt out, and the last couple of trips were more stressful than pleasurable as he was confused and anxious most of the time.
I feel I can't continue supporting him in all these activities, especially coming to london, but can manage a bit longer supporting him at home Readers of this page will now he lives with my brother, who has mental illness but does provide some safety net.
My manager has told me I have no more carer's leave allowance, i also have no more annual leave, so much has been taken up in Dad and brother related obligations (attending case meetings, rushing off to retrieve Dad from some situation, as well as kids being sick). She now wants me to come in on days off to make up time owing.
Frankly, I feel suffocated by all this . I live in fear of the phone ringing and hearing " hello it's the transport police". Time to myself is incredibly precious, but I live with this feeling that a bomb is going to go off at any moment if I ever start to relax.
The HTT guy advised me next time, not to go to Charing Cross. At which point the TP will have to dial 999, Dad will be taken into hospital, will kick off, will be assessed and end up on a psychiatric ward. This seems harsh and will condemn him to a faster deterioration and probably institutional living. I don't want that to happen yet, but I am burnt out from rescuing him, supporting him and dealing with all his mishaps.
Finally, my kids are showing evidence of distress at the stress and snappiness towards them, and my husband has started to detach from the whole situation. Thanks for any words of advice. I'm running out of ideas here.

Hope your DH is coping. Could the neighbours' attitude be informed by concerns about for example fire, and their property being affected? ( not that it isn t a valid consideration ,but they may have their own agenda).

The new carers start on Monday the 10 th. If it breaks down with them, then we have burnt all our bridges with home care and Dad will have to go into residential.

He seemed ok earlier but didn't ask too much detail as his Dad was in the background as discovered to my horror sitting there in my PJ's when the DC's Facetimed him ! DH was really really stressed before going though and I did feel for him.

I think the issue is the neighbour feels he isn't coping and is very very kindly picking up the slack of what the family should be doing but can't from another country. She thinks we should be making him come home but all of us know that it isn't that simple as he has capacity. MIL failed to persuade him t return when she was still alive. I din't think he is going anywhere.

Again, one of those situations where it is what it is really.

Yes it does sound tricky.is he dead set against returning or could he be persuaded? If he does have capacity and is adamant he won t come back, there s not much your DH can do. I seem to remember you saying he had Parkinson's. That can affect cognition.

Absolutely dead set against it or moving into somewhere else in Spain. The Parkinson's seems fairly well controlled we think but DH will see more over there. He has diabetes, can't hear well, is 10 years post triple heart bypass, has glaucoma and been told he has 1-2 years sight left. All 4 children have failed to persuade him.

DH and I had the chat about phrasing it to see if his Dad does understand what his care needs will be in the future. Will have to see what he says when he gets back. Suspect he does have capacity though.

I meant to ask you Bob - do you have both LPA's or just the finance one ?

I only have finance, that is why ultimately the professionals can over ride me if they think dad s not safe at home. To be honest I don t mind,I think when the time comes I ll be quite happy to hide behind them.

Yes I hide behind my professionals and the fact my Brother has the Health POA beng registered. From what I've read though the COP can go against the wishes of the Attorney anyway, which I think is why Mum's SW is very chilled out about me not having it.

Bob, I thought of you when reading a review of a book about resigning. Apparently it is a very human trait to continue to persevere even when the chances of a positive outcome are low. So you end up doggedly pushing against the flow, exhausting yourself in the process.

You have given your dad much longer at home than he might otherwise have managed. With your efforts he has just about held it together and been able to go to concerts, see friends, etc. If Social Workers decide that home help is not working, then you should look back to what you have achieved, rather than seeing the move to a home as some sort of failure on your part. You have done as much as you can.

Thanks everyone. I guess when you have thrown your energies into supporting an elderly parent, it is hard to say that's it I'm stoping, and so you end up propping up an increasingly shaky and bizarre edifice. There is also the fact that he undoubtedly wants to be at home and even though I know he does not have capacity, it is hard to go against him. Maybe because all his life, he has been an intimidating person whenever put into a situation he doesn 't like. Ie , I'm scared of him.

I think when you are facing a parent ultimately leaving their home, you do want to feel every possible avenue has been explored. At least if the new agency doesn't work out then you know there is no other choice.

It does sound as if when the time comes, hiding behind the professionals is the way forward and probably what they will advise if asked. Fingers crossed that new Carers will give you a bit of respite.