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Elderly parents
Original poster

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

36 replies

whataboutbob · 12/01/2014 09:16

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.

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WynkenBlynkenandNod · 03/02/2014 17:00

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.

Original poster
whataboutbob · 03/02/2014 14:29

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.

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Needmoresleep · 03/02/2014 11:26

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.

WynkenBlynkenandNod · 03/02/2014 07:33

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.

Original poster
whataboutbob · 02/02/2014 21:00

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.

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WynkenBlynkenandNod · 02/02/2014 20:14

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

WynkenBlynkenandNod · 02/02/2014 20:08

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.

Original poster
whataboutbob · 02/02/2014 19:54

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.

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WynkenBlynkenandNod · 02/02/2014 19:49

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.

Original poster
whataboutbob · 02/02/2014 19:43

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.

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Original poster
whataboutbob · 02/02/2014 19:38

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).

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WynkenBlynkenandNod · 02/02/2014 18:46

DH is at his Dad's at the moment and will need to face up to the neighbour who thinks FIL should be coming home. Different disease but same problem, very hard to make someone.

WynkenBlynkenandNod · 02/02/2014 18:43

I think if you can maintain the Che sera sera attitude it is the best thing. Good thinking with the answer phone, I wouldn't have thought of it but I think you're right.

When will the new Carers be starting ?

Original poster
whataboutbob · 02/02/2014 17:57

Oops that should have read " he just got angry when I advised him not to".

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Original poster
whataboutbob · 02/02/2014 17:56

Well I sent the carers a Dear John email and They were very graciousMaybe they are relieved, dad and bro are not an easy gig.
I feel deep down this is the last ditch effort to keep Dad at home. After I got home on Thursday there was an email saying Dad had been found inside the railway barrier by a neighbour, he told him he was waiting to wave goodbye to me. He managed to talk him out of there. Today there were 2 vitriolic messages on he answer phone. " this is rotten, we are a family and you are keeping us apart". It occurred to me he may have intended this for t he woman on the recorded message, in dad s logic she is barring him for talking to me. I also had a difficult,showdown when I saw him,he told me he would be coming to london soon. More getting lost, more transport police and having to escort him. He just got angry when I advised hint to. Half the time I am trying t take a " Che sera,sera" attitude,to stop permanent and debilitating worrying.

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WynkenBlynkenandNod · 29/01/2014 07:25

I'm glad it happened. Can imagine how surreal it was, I was imagining that in my head before the ones that didn't happen with my Mother.

The carers do sound rubbish, good thing the HTT saw what was going on and good your Brother is trying more. I guess you'll know when you can't do it any more. I'm glad things are okish for now.

Original poster
whataboutbob · 28/01/2014 21:29

Hi WBN, yes it did. It was quite surreal walking into a meeting where a bunch of professionals announce that the agenda is whether your parent can or cannot stay living at home, and that the decision will be theirs and not yours. I must say first up that I went in there wanting Dad to stay at home, for several reasons. 1) it's where he wants to be 2) moving would be traumatic, and likely to involve coercion and maybe more (restraint, sedation etc) and the places open to him may be a bit grim (I could be wrong on that) because they are set up to deal with people with difficult behaviours. My brother is terrified of Dad moving out, mostly for his own reasons and because he has never lived independently. That is not in itself a reason for Dad staying, of course. But he is so scared of Dad going he is making more of an effort, for example preparing food for him.
Anyway the upshot was he'll stay for now,even though he does not have capacity. The carers leave a lot to be desired and I found out that the home treatment team (who recommended them) witnessed them knocking at the door, waiting half a minuter and driving off. Then the HTT went up, rang the bell, no answer, so they rang the phone, Dad answered it and let them in. In a nutshell, the carers aren't trying hard enough so the HTT is looking for another agency.
As for me, I've accepted I'll have to cope for a bit longer. There is stuff that needs doing all the time. After yesterday's meeting, i have to go back on Thursday because Dad's patio doors are broken AND he's lost his keys, etc etc. It's all difficult, I'm trying not to let the stress eat at me and not neglect kids and DH. I could be deluded but I think I'm doing OK on that for now. But I know it could all change quite quickly.
Hope everyone else is managing.

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WynkenBlynkenandNod · 28/01/2014 16:31

Bob, did the meeting happen yesterday?

WynkenBlynkenandNod · 18/01/2014 09:02

Flipping heck Needsmoresleep and Bob, I'm getting off very lightly with two skips then ! A lot of Mum's has been done gradually over the last year when she stopped fighting decluttering. I did a lot one Christmas then another lot last summer when she was in CH plus the cleaner and carers seemed to have done some as they went along.

I am sure it's only the fact my Mum had to help clear her sister's house that made her agree to let me start clearing a year ago. My Aunt's was a gut and replace floorboards job.

Upstairs on our house is effectively a loft conversion with very little storage plus garage is converted so this has cured me of any hoarding tendencies. DD used to find it hard to let any of her things go when younger but in her own words is 'very unsentimental about stuff these days'

Original poster
whataboutbob · 17/01/2014 19:59

Thanks NMS.i hope everyone on this board has a good weekend.

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Needmoresleep · 17/01/2014 14:00

I filled the equivalent of a skip just with junk mail, and about 5 with clothes. I set myself a daily target of the physical equivalent of 10 bin liners a day. It still took 3 months and I remember the frustration when, after a couple of months, I discovered that there was also a storage area the size of a large shed inside the communal garage which was absolutely full to the brim. Time to sort out my own hoarding tendencies now.

Bob, as well as giving you a chance to recover, taking some time out now might allow you a chance to regain perspective which will then benefit your dad and brother. Not your fault but the situation has been so chaotic and demanding that this would be difficult whilst caught up in the middle of it. Have a great weekend.

Original poster
whataboutbob · 17/01/2014 13:33

I am very anti hoarding. I love putting stuff together for the charity shops. We are probably going to have a loft conversion so I anticipate many trips to the dump.
Once you have had that heart sink experience of repeatedly trying to prise your parent's junk away from them, against their protestations (in my case, literally so i can open my Dad's bedroom door and clean and sort through his stuff) I think you become more discriminating about what you have around your own home.

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WynkenBlynkenandNod · 17/01/2014 07:15

As in very careful what you keep?

WynkenBlynkenandNod · 17/01/2014 07:15

Ooo yes I remember Life Laundry, Mum would need a football pitch! Lots of old videos have gone in th skip Pudcat. She had a pile of boxes covered with a table cloth in the conservatory that turned out to be videos ,clothes are still a work in progress .

In my garage I've got some 60's Clothes that look like they have survived, vintage kitchen bits , glass, records and loads of old books that all need goin through as we're not sure about them. My friend sorted a car boot pile but I don't want to be spending weekends forever more doing that so that is now a charity shop pile. My friend is great at this, she did it for another friend and could make a living out of it I reckon,

Her memory box has her pencil box frnm school, recorder, hair rollers, hairdressing text book and old camera so far. I've lovely old photos coming out of my ears. It is definitely cathartic the more I think about it - though she has got 28/30 on the MMSE this week which is hugely ironic.

Having parents who are hoarders are you now anti hoarders ?

pudcat · 16/01/2014 21:38

Well I cleared a lot of my Mum's stuff out yesterday. Surprised how many videos there were and so many clothes which are now far too big for her.

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