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Struggling in limbo - Page 6 - Carers UK Forum

Struggling in limbo

Tell us a bit about yourself here.
74 posts
How do you feel about this? I'm glad you are having counselling next week, I found it ultimately hugely helpful, but it seemed a waste of time, just me chatting, for the first few weeks, so be prepared for this, don't give up before you've given it a chance, like I nearly did!
Is he going to have a support package when he is back home?
Is it all arranged, you know who is coming, and when?
Have you had a Carers Assessment after the discharge decision was made?
I am glad my Dad is finally coming home. Upset myself a bit by reading up on Parkinsons Dementia, although I always knew it could be that and not hospital delirium. Hopefully the medication will improve his memory bit and slow down the progression. Carers will be coming in three times a day to start off with and SS will review in two weeks. SS also made referral to district nurse for incontinence support. Hopefully the counselling will be helpful but I know it depends on the counsellor as I have had a few sessions before.
An update: things have been a bit tough with having Dad back home. Had to call an ambulance on the first morning as he slipped of the bed and didn't want me to help him up. Luckily when they checked him over everything was fine and I bought another bed rail for added safety and he has been ok since. I am managing his personal care and medication and managed to start the process of the LPA, however seeing this new 'version' of my Dad is quite hard and I have been have a little cry every day. I have not had any support or advice from the doctor or his GP about how to manage his condition and have done all my research online. Unfortunately one of the symptoms is a change in appetite which for my Dad is overeating. He forgets he has already eaten and keeps going in the kitchen for more which isn't safe. He has already put an electric kettle on a lit gas burner, luckily while i was at home. SS says i should look at getting the kitchen secured and the gas companies can fit a gas safety locking valve for free. Carers coming in 3 times a day for 30 mins personal care call is not enough. I am looking into carers coming in for 5 or 6 hour blocks every day - Hometouch or last resort but maybe necessary for safety a residential care home. Having a free consultation about paying for care with an IFA next week and SS to review next week. Received a letter from DWP saying i am not eligible for Carers Allowance!, tried to phone their helpline today but no one picked up!. Also applied for higher level AA for my Dad. So much to do!.
Boiling it down, do you think the time has come for residential care for your dad?

If so, how would the funding work?

It would be a sad decision, but it may, in the end, be the only 'practical' one to make??

So many of us here have reported (me included) that once a parent is in residential care, we 'get the relationship with them back again'. Because there is 'someone else ' (ie, care home staff) to do all the 'drudge- care' (getting them up, dress, bathed, fed, watered etc etc) WE are free to 'keep company' with them. The 'chores' are now done for us.
Yes residential care is very much in the picture, complicated by the fact I live in my Dad's house, but I only want the best for him for his health and safety. I am seeing a IFA for a consultation next week to discuss paying for care and asset management. Dad would have to self fund. The only other option is a care agency such as Hometouch who specialise in home care for people with dementia with a carer coming in every day for blocks of
time like 5 to 8 hours a day which will be slightly cheaper. Now he is home the speed of his cognitive decline is quite shocking. Have not had any help from the memory clinic or his GP about how to manage his diagnosis, have had to research everything online. Have also to help him sort out his will and tussle with the DWP over trying to get carers allowance and getting the higher rate AA for Dad. Very stressful and tiring.
In which case , the question of future housing rears it's ugly head ... especially if you are still under 60.

Time to give that prospect some thought ... a safety net of some kind ?

AGE UK on the whole care home issue :

https://www.ageuk.org.uk/information-ad ... care-home/

Several links off that page worthy of exploration.
Whatever you do, or whatever your IFA 'advises', do NOT go down the route of 'clever solutions' to protecting your father's assets from being 'wasted' on his care....

Trusts, disposals, etc etc do NOT work. They are run by 'for profit' commercial companies and simply want your father's house for themselves, leaving you and him with nothing.

However, assuming you are not gong to do that, the brute truth is that there is NO 'clever way' to evade paying for care. There just isn't.

It boils down to 'money or your life'. Which do you value most? Do you want to give up your life caring for your father until he dies, and then inherit what you can, when you can, or do you want to say 'stuff my inheritance!' and blow it all on his care.

Either choice is valid but you have to make it NOW. The very WORST is to start caring yourself, then throw in the towel later....only to find that you STILL lose your inheritance.

The 'devil' is that we CANNOT know how long they will live. So we can't plan or forecast for ANY 'escape point' and so we MUST 'assume the worst'. That they will live far, far, far longer than we want (or even, sadly, than they themselves want), and that ALL the money will have gone by the time they die.

It's brutal, it's bleak, it's desperately sad, and infernally infuriating, but there it is. Your choice is a hard rock or a hard place. No other. Money or your life.
Well I do want the best care for my Dad if that means losing the house and inheritance to care costs then so be it, as it is am very tired after one week of looking after him, but some of that is adjusting to his condition. If it was not for organisations like this, Alzheimer's UK and Unforgettable I don't know what I would do. Seems they just give a diagnosis and then just cast you aside
That's about it in CarerLand.

Words / leaflets ... practical support ?

That depends on the number of noughts in your bank balance.
From the memory doctor only the diagnosis and the patch medication which will be reviewed by the memory nurse in 4 weeks time. He was still discharged from the rehab care home 3 days after diagnosis, the care home and staff were nice but no real other support. SS have been good liaising with the care agency and referring to the district nurse for incontinence support.
74 posts