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.

[pudcat]

Sorry to hear all this. Not got a lot to offer. Why does the home say they cannot cope. When I leave Mum she is often aggressive and shouting, but according to the home she has calmed down within 10 mins and forgotten that I have been there. If he does end up on the psychiatric ward he will be assessed and hopefully found an appropriate home.

You have your own family to think about and to be there for them as well. You have done your best and must now think about letting the medical and psychiatric professionals look after them. It is hard and it feels like you are giving up, but you are not. You will be doing what is best for your Dad. Take care.

[3littlefrogs]

I have been where you are OP.

Your dad needs to be in a different home, one with a specialist dementia unit.

I know it seems harsh, but actually, the advice to not turn up to rescue him is the right advice. Sadly, as long as you show that you are willing to step in, you will be left to do that.

It is only when you and your family are completely broken, that social services will pick up the pieces.

Put yourself and your children first. Otherwise you will never recover from this.

Your dad will be temporarily distressed, but he won't remember.

There WILL be a home that can cope. He needs proper assessment. But nobody will do that as long as you are "coping".

[Needmoresleep]

I have been following your story for a year. You have given so much. From the outside:

1. Your father is sufficiently unwell that a CH or NH is the best option. The cost to you of propping it all up is too high.
2. As with many situations which have been slowly deteriorating you need a crisis to affect a change. You need to let this crisis happen. Good advice from the transport police. It is horrid to go against a parents wishes and may seem cruel in the short term. But your father lacks self awareness so his views do not need to be given the same weight.
3. Cherish your children and your husband. Recognise your duty to your employer and colleagues.

I would be tempted to take a month off from your dad. Tell the Social worker, his GP etc that you are suffering carer breakdown and really cannot continue. The old adage of graveyards being full of indispensable people. Do some family thing and give them more of your time. And sleep. Something will happen.

To be honest most of the outcomes available to your dad don't sound good. All you are doing is delaying, not preventing. Something happening now might allow him scope to stabilise and regain a level of contentment. And for me after three years of a nagging worry about my mum being on her own, the relief that she is somewhere with a 24 hour warden and a manager I can speak to has lifted a surprising amount of low level anxiety from me.

Take care. You have already done much more than many, including me, would have done.

[whataboutbob]

Thanks everyone. Just a few more details. The home was a specialist dementia one. But most of the residents there were in late stages, or quite placid. Not a lot of challenging behaviour going on.
I spoke to dad and told him quite bluntly not to come to London, that it is a dangerous place for him ,that he will get lost and picked up by the police, and I may not be able to help. He denied ever having been lost there, ever having been picked up by the TP, etc etc. He just kept saying " I got my doctorate from london". There's so much pathos there, him trying to hang on to probably the most important part of his self image in the face of a rising tide of incapacity.
Anyway I just repeated my point, basically trying to put the fear of God into him, but doubt I succeeded, for all i know I may have re-planted the idea in his head and he may be on the train as I type this.
I have also written to his friends in london, some of whom I know have been phoning him and talking of "meeting up" "activities in London" all of which would obviously involve me taking full responsibility for all the logistics, fetching him, putting him up for the night, taking him back etc. I just can't do it anymore and have asked them all never to mention these activities to Dad again.
Maybe there is scope for him to increase his activities where he lives, but I'm not sure how to arrange this as when I'm not around, nothing much tends to happen. Certainly my brother will not get involved.

[WynkenBlynkenandNod]

There have been some wise words here and I think you need to read your last paragraph . When it gets to that stage you have to step back or the whole lot of you will go under.

Definitely have a look at some more Homes, they do seem to vary in what they can and can't cope with. The fact that your Dad goes off and gets lost is the biggest problem you have as it is pretty much impossible to stop this and sadly makes him a big risk to himself. Realistically, however hard you try, you won't be able to stop this.

My Mum isn't happy when I visit and I think some of the time when I'm not there. I've come to the realisation that she won't be happy wherever she is but at least she is safe, medication, hydrated and has good nutitrition. The CH have said they don't think she will ever accept she has to stay. Horrible to think of her like this but I know I really tried to keep her at home. As I see her neighbours ariound more stories of carers beng locked in their rooms emerge, which is also awful.

It is a case of making the best of a bad situation, accepting there are often no good solutions, and self preservation. I'm sure none of our parents pre disease would want us to go under trying to support them but that is all too common a story very sadly.

[WynkenBlynkenandNod]

The fact that you've tried really hard to support your Dad but are now in the situation where you need to make time up shows how incredibly hard you have been trying to support him t stay at home.

[whataboutbob]

Thanks Wynken. Nothing new to report really, but I had a real heart to heart with DH yesterday who basically said I am wasting time and emotion trying to rescue Dad and bro, that he is worried about me and I need to distance myself otherwise I am heading for a breakdown. And basically there's no point me going under with them.
This has actually given me some clarity. I have not heard anything from them this week and i guess they are continuing in their odd ways but no crisis has occurred yet. The carers say my brother is blocking access (I believe them on the whole). i think he is terrified of any outside agency, due to his mental illness. he is also very scared about what will happen to him when Dad goes into a NH. And I don't know what that will be, but can't control everything.
Anyway have actually decided not to go to Dad's this Saturday as Sunday is DS2's birthday party, we will have 6 kids on top of ours and are taking them across London to a venue and i do not want to be frazzled on the day, that is a serious responsibility.
There will be a crisis at some point, and I'll face it when it happens.

[WynkenBlynkenandNod]

I found DH's insights very helpful. I guess they are involved but not as emotionally attached and can see clearly more easily. You're right, you can't control everything and I think trying to cope with illnesses such as Dementia and Schizophrenia is often trying to control the uncontrollable.

I'm very glad to hear it has been a calmer week. I think you are right not to go on Saturday to reserve your strength for Sunday, hope it goes well.

Sometimes I think the waiting for a crisis is worse than dealing with it when it happens. I've found now the decision is made about residential care for Mum, things are easier in a lot of ways. The house clearance had seemed like a huge thing ( i had dreaded it for years) but that has been going very well and not at all the awful scenario I had imagined, though a bit tough psychologically at times.

[whataboutbob]

I might be deluded but i think I will actually relish clearing the junk in my parents' home. There, I've said it. It sounds monstrous, but all that stuff will have no use. My father even forbade me from throwing away my old A levels files, saying " you never know one day you might need to teach biology"(i am not a teacher), he then went on to hide them in his garage. He has 2 garages full of broken/ rotten/ utterly outdated and redundant stuff. Plus the attic, which i guess will be tougher because it has a lot of stuff collected by mum. She did at least have good taste. I suspect when I do finally have to sort through all that stuff, it will be quite cathartic to take all the useless stuff to the dump.
I hope you feel liberated when the house is cleared. Although of course the symbolism is tough, one is dismantling one's parents' home and a big part of one's childhood and youth too. But you are doing a necessary job and I hope it continues to go well for you.

[WynkenBlynkenandNod]

I've copped out a bit and have a friend doing it with some helpers. There's still lots for me to do though as I have go over to ok what stays and goes and there's a lot to sort in my garage now. I really don't know what's in the loft yet so that's next week's thing.

A clear garage feels very liberating I must say. I'm keeping some select bits from when she was younger for when she regresses. It is sad but I hope these bits will help in the future.

My top tip, just bite the bullet and get skips, so much easier and quicker than the tip runs - it sounds like he has a lot , that's probably an understatement !

[whataboutbob]

Skips! I fantasise about skips! Do you remember that TV programme called life laundry? My best friend's mum is a hoarder, we used to invent scenarios where our parents were on the programme, standing there on the lawn ( or the football pitch) all their possessions laid out around them while the woman with the American accent and a PhD in de cluttering put her arm round them and said " now then whataboutbob's Dad, there seem tobe some emotional issues here".

[pudcat]

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.

[WynkenBlynkenandNod]

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 ?

[WynkenBlynkenandNod]

As in very careful what you keep?

[whataboutbob]

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.

[Needmoresleep]

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.

[whataboutbob]

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

[WynkenBlynkenandNod]

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'

[WynkenBlynkenandNod]

Bob, did the meeting happen yesterday?

[whataboutbob]

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.

[WynkenBlynkenandNod]

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.

[whataboutbob]

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.

[whataboutbob]

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

[WynkenBlynkenandNod]

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 ?

[WynkenBlynkenandNod]

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.