Another crisis and not sure i can manage this one(61 Posts)
Went to visit Dad yesterday. In brief, 2 weeks ago he had a fall when his carers helped him out of the bath (I had requested a bath assessment and bath chair 2 months ago, it didn't happen). He now cannot walk up the stairs, does not leave the house, is doubly incontinent and in pads, and barely speaking anymore). he had been declining prior to the fall but now his state is quite shocking. he's on the living room sofa bed all day, and has the beginnings of a pressure sore.
The washing machine is broken. There was a pile of urine and faeces soiled clothes and bedding on a heap in the kitchen.
My brother is in full on denial mode and just thinks dad is going to continue living at home.
To cap things off Dad's rental flat has flooding because a cowboy builder did not waterproof the new shower, I have got a plumber in he has completely removed the shower and it will take 2 weeks to reinstate because we are waiting on a carpenter, a wall is waterlogged and needs to come down, a new one needs to be built to support the new shower. Will cost at least £1500 to put right and tenants will want compensation for 2 weeks without washing facility.
I have been signed off work for 2 weeks because my blood pressure was dangerously high (also work related stress going on).
I rang a cousin who's a GP and he thinks Dad may have a subdural hematoma, a slow venous bleed around the brain which is impacting his functioning. Only way to know for sure is a brain scan.
All I could do yesterday was go to rental flat to pacify tenants, go to laundrette and wash the stinking pile of stuff, and spend time with Dad and bro.
ICT are delivering a hospital bed, no idea where it will go, Dad was a hoarder, bro is a hoarder, the living room is a hovel and the carpet smells of piss and poo.
Just feel totally overwhelmed and minded to let the professionals deal with it now as i am too weak to take it all on. I have been signed off work for 2 weeks because my blood pressure was dangerously high (also work related stress going on).
I know I should:
Hire a van and do the much needed garage clear out (ignoring my brother's protests as i go along)
Clear assorted junk out of living room
Shift sofa bed into garage
Get on GPs case to get Dad's brain scanned
Attend crisis meeting to weigh up options for Dad's care: respite/ nursing home/ stay at home in micro environment
Chase up incontinence nurse referral, if indeed the referral was made, as I have discovered i can never assume people do what they are supposed to do
Find out why the bath assessment never happened and who is responsible
Get onto council: the wheelie bin has disappeared
Negociate with my manager a further 2 weeks' unpaid leave
Attend meeting with CCG Dad's continuing healhtcare funding is under review in 1 week.
BUT can't face any of it. I feel utterly done in.
I have no wise words but wanted to send - you are doing amazingly well. You are one person and you have to look after you too.
Sending strength and best wishes
So sorry to hear this Bob I totally know where you are coming from. I would say make the GP your number 1 priority, also maybe he could have a couple weeks respite care in a nursing home where they can help with the pressure sore and incontinence, and then it will be easier to get the house sorted. I would press for this with the GP tell them you are struggling to get everything done and you need help.
Really sorry to see that you are in this situation. I was also going to suggest talking ti the GP about respite care for your dad. Thus will take the pressure of you somewhat while you deal with other practicalities.
Start writing now - your letter to the GP copied to social services. All the gory detail, no saving face. You need help.
Does your dad have a care manager? If so then contact them and they should be able to help. If not, then call ss and ask for one to be assigned.
Hello, and thanks for all the replies i am genuinely touched. Dad has professional carers from 8am to 6pm. Up till recently bro's role was cooking him dinner and putting him to bed, he has mental health issues and can't do full time care.
There is a dementia team involved which includes a psychiatrist (who i am not sure has seen Dad in the last year) and a CPN, also an OT.
DNs visited yesterday, looked at the pressure sore, and outlined all the things they were not able to do (dress the sore because it's in an "awkward place" , pick him up off the floor- he was lying there after a fall off his chair and bro, carer and me had to pick him up and put him to bed while they looked on).
Anyway I will compose an email to the CPN who seems to be the overall co ordinator. The jist of it is things are barely manageable and we need help and better co ordination between the agencies. Probably also a GP visit no doctor has seen him since the fall and A and E 2 weeks ago, which basically consisted of XRays to check for fractures (none) and a blood sugar level.
Bob I am so sorry, this sounds like a nightmare
I think maybe today before you start anything just take a moment to think about what you feel is now best for your Dad - do you feel it is in his best interests to continue staying at home or do you feel it is on his best interests to now go into residential care ? My personal view is that he needs respite for a few weeks to get through Christmas and there is no way you are well enough to most of the things on your list.
When my blood pressure shot up and my GP told me to step back for my children's sake you and the rest told me to listen and supported me with that, I urge you now to do the same. It is absolutely OK to say to SS that you can't do this as you are too unwell and step back for a bit. You can monitor from a back seat, write letters etc .
You have managed to keep him at home for an extra 2 years which is a massive achievement but it is affecting your health now the time to make decisions in light of that. I know this is incredibly hard but hang in there.
Thanks SPT I know you've been there and have the T shirt.
After posting i took the kids and we went to the national history museum which was a nice change. While there got a call from another concerned professional (DN) who tells me she is referring on (to an agency that Dad has already been referred to, ie social services). Who knows what it'll yield it seems Dad is in a loop with professionals referring to other professionals but no real help yet.
I have decided to try and get more time off work unpaid as can't face going back, even in 8 days. Time alone when the kids are at school is like medicine to me these days and i need more of it!
My GP was v sympathetic so I will go back and see her next week.
I am going to try and take a bit of a step back as SPT advises and not try and jump to sort everything, because quite simply I can't. If Dad goes into respite or even care so be it, in a way I'd be a lot less concerned about him leaving the house if bro wasn't in the picture as i fear his reaction. But I can;t let that dictate everything and you're right SPT, I need to think what's in Dad's best interests and at home with a pressure sore and filthy sheets is not it.
Oh Bob I am so sorry to hear how things are. And listen to wise SPT- and think what you would say to any of us if we were in your shoes. Warning bells are ringing- you must look after yourself. Take some time out to restore your sanity. You cannot do it all- there are professionals about and you cannot fix everything. And your children need you healthy. Take care. Put yourself first. You are no use to anyone if you don't.
It's a T shirt I'd rather you don't have to wear too but sadly I think it is the nature of the Beast aka Dementia. I think the DN referral adds more grist to the mill in a case conference. I suspect there is an element of waiting to see what you do to be honest but could be wrong.
I'm glad your GP was sympathetic and think you are right to take more time off until you feel stronger. It's 2 years ago this month that my Mother went into Care and I still find my blood pressure shoots up with stressful things, it did it today as we've had difficulty with DS and school but I do know now when I have to take a bit of time out.
It feels like a horrible thing to do but I would recommend emailing SS to say you are currently unwell and in medical advice can't be involved in your Dad's care, so it's in writing. Say you support whatever decision they feel is the right one now as you trust them to act in your Dad's best interests . It doesn't feel good but in the words of my counsellor - is it your guilt to feel? It's not, it's the horrible circumstances you're in, no one's fault but the disease.
Deciding to take time off and to step back if that's what you do decide to do, are very positive steps. I think looking back you'll probably see this time as the crisis point but the time when hard decisions were taken that led your Dad to getting the care he needs and you protecting your health and being there for your children.
Also with your Brother in the picture it is better for your future relationship if this decision comes from the professionals. Take care and please keep posting, even if it just a massive scream.
Bob. Sorry I missed your post. I hope it does not look as bleak today. All my sympathy is there, but instead getting to the point.
1. Your dad can't continue at home. Everyone has done as much as they can and that cost now is too high
Hopefully he is more passive now. What do SS and others suggest. Ball is in their court. Minimise your involvement, not least to try and force the issue.
2. What are the options for your brother. I would have thought some sort of sheltered/community option. Staying where he is on his own would not be good for him. Does he have some sort of key worker. Tell them your dad has reached the end of the road. Your brother needs to move. He won't like change but it will be in his interest. You could always say that you will need to sell the house to pay care home costs.
3. Clearing the garage. Don't do this on your own. It goes much faster with others. It's like the TV programmes. Others can be more detatched. 3 hours, nice pub lunch then another 3 hours. With two or three others you can real headway. Perhaps a chance for the long suggested MN meet up. (Seriously I'm game.)
4. Rental property. Aaarrrgh. Yes there is money to be made but it is hard work. Get the building work done and get to the end of the tenancy. Then if you have a decent agent give them management. If you don't, sell. The personal cost is too high
I think that's it. Ohh also if you can't face any of this then don't. Things curiously won't fall apart, or more probably they need to and if you are not there someone else will have to pick up the tasks.
Thanks everyone. The inevitable happened, Dad had a fall and could not be picked up so an ambulance was called and he was taken to hospital on Sunday. I was rung by a discharge OT who informed me that as he was medically fit (?!) they were looking at discharging him today. I explained that his home was entirely unsuitable and if discharged back there the same would happen again. SHe asked me to find a respite place for him, obviously worried about bed blocking. At this point my self preservation kicked in and i said no, on the grounds that i had been medically signed off work for 2 weeks with stress and very high blood pressure and i couldn't take this on. I said I would be working on adapting the living room, ICT had promised various items but currently they can;t go in because the living room is full of junk, etc etc. I'll do a clear up, but not this week.
He's still in hospital. I don't know what is going to happen in the short term and I am not desperate to chase up everyone and find out. I've been sleeping quite a bit, now I'm not working I realise how tired I am.
Don't feel i can go back to work next week. If i have to take unpaid leave so be it.
Oh Bob. Well done for sticking to your guns. Wise words from all on here- but you cannot do it all. Take that time out. Look after yourself.
Well done for realising your limits and sticking to them Bob. So sorry there is yet another layer of stress added with him now in hospital. I think not chasing is definitely good, see how it pans out. The bed blocking issue will focus the professionals thinking I suspect, see what they suggest.
Thanks everyone. I have not heard anything from the hospital, just got a phone call from the ICT OT. Everything and everyone seems to be working slowly, which suits me at the moment. I'm not taking the initiative on anything. Only thing i've done is order a new washing machine and also found out the unpleasant but practical fact that the council does special incontinence pad sacks and collection. Who knew. Next week if I'm up to it I'll arrange for Dad's lifetime of junk to be removed from his 2 garages.
Yuck but I guess that is a help for some ! Well done, you're doing brilliantly
Hello, sorry to hear this. Can you talk to the hospital social workers? They should be there, if you can hunt them down.
We had a very similar situation with my mother at the start of this year. I took photos of the house, which was the only way of convincing them that the place was unsuitable for her to return too (massive hoarding issues too). I also - as advised on here - used the phrase 'unsafe discharge' a lot, and in the end they did listen and found her a month's place in a nursing home for assessment.
Also, the social workers were very good at putting me in touch with cleaning firms who specialise in this kind of clearing - I dealt with two, both of whom were very sensitive, helpful and good at distinguishing between important personal possessions and rubbish. And didn't judge at all.
Bob, you have just added to my store of random knowledge. I have just googled my council. Incontinence pads can be double bagged and put in ordinary waste. Syringes however qualify for a special collection.
In the meantime sit tight and rest. At the moment it is someone else's problem.
Thanks guys for the first time ever in this sad saga I am just keeping a low profile and letting others deal with it. i know it's temporary but heck, it feels good!
And I hate to say this but it seems to be part of the bereavement. Essentially your parent becomes a problem to be managed. Yes they may state preferences, like SPT's mother on the other thread expecting to go to California, but you know what they want is unreaslistic, so you have to make decisions on your own taking on board what setting will be best for them and where they will be most content.
It makes it easier. But is sad nonetheless.
Bob well done for sitting on your hands on this- I know how hard it must be but you need to do it girl your health and sanity. NMS is spot on as always- we cannot make things right or what they want- just what can be done and often by others. Take it easy.
How are you doing Bob? Hope you are feeling better.
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