Hello - looking for a hand hold

New to Carers Connect
1

Good morning all,

Just looking for a hand hold and any pointers anyone may have. I know there isn’t a magic wand but I don’t even know where to start.

Dad age 89 has had Alzheimer’s for 7 years. Mum age 84 is his full time carer, no help at home at all other than from me for shopping, medical appointments etc. She has no life or freedom at all and he cannot be left alone and will not go anywhere such as day care or trips, therefore neither can she. No remaining friends left to have round for coffee or day trips with etc. I am mum’s only real friend so if I care for dad she is in no better place.

Those of your familiar with Alzheimer’s will know that apart from the continence issues and the repetitive conversions and behaviour he is really clingy and won’t let her out of his sight.

Things have reached breaking point and mum has just been released from hospital after having heart surgery. She needs four weeks complete rest for recovery and is mentally at breakdown point. I have brought dad to my home and he is now in the second week but I have to go back to work. Mum is refusing to have him back home and says she will not be his carer any longer and will walk out of the house and not come back. She needs me to care for her too without her having to care for him.

I have involved adult social services and they have done a mental capacity assessment for dad but they are not interested in mum’s position. She has told them she will not care for him anymore and they are now producing a case to make a best interests decision. Despite dad failing the mental capacity assessment spectacularly he has expressed a wish to stay at home, of course, and be cared for by his wife. Since dad didn’t have a LPA this effectively means she is stuck in the hell that she is in being a full time carer for her own last years when she is neither physically or mentally able any longer.

Where do we go from here? what steps can we take and what is the best outcome we could hope for. I love dad dearly but mum has dedicated 60 years to loving and caring for him and she is my biggest concern right now.

Social Services have suggested that she has carers in the home 4 times a day and can have a sitter, but what is the point of a sitter for an hour, dad will likely be distressed by stranger in the home anyway. I assume day care centres are closed with Covid 19. I cant get her respite as the care homes won’t take him because he will have to isolate for 14 days alone in a room and he won’t stay in that room so social services would have to take his civil liberties from him and lock him up which isn’t in his best interests.

Someone please help me with what happens now, what can I expect, where can I go, who do I need to involve? Will a carers assessment help if the carer wont be a carer any longer? How have neighbours managed to get residential care for their loved ones that haven’t been in as advanced a state as dad? I just don’t know, none of it makes any sense.

Edited to add: yes they get Attendance Allowance, and yes dad has savings of around £35k although mum can’t access most of it due to him not having a LPA.

2

You have to tell SSD that you CANNOT have dad there any longer, and insist that he goes into respite care until something can be sorted out for him.
If he has dementia he cannot make proper decisions, of course he wants to go home, everyone in the world would say the same, but it’s not what he wants that matters now, it’s what he NEEDS.

It really makes my blood boil when I read such rubbish about decision making. My son, aged 41, has severe learning difficulties, mental age of 3 in some areas. I have huge problems about what he does and doesn’t want. 5 minutes apart he can say he does want to do something, and he doesn’t.
This weekend “Do you want to make some mince pies with me this morning?”.
“No”.
Same question 5 minutes later, yes he does, and happily spends all morning rolling out pastry etc.!!!

It’s a shame your dad didn’t go into respite when mum went into hospital.
Maybe get her GP to tell SSD that dad can’t go home to her because of her health.
She does need someone to look after her, it’s free for 6 weeks anyhow (did they tell her that?).
How can she look after him when she needs carers herself?

I was once bullied by SSD and my mum’s GP when I’d just come out of hospital having had a kidney removed, which involved opening up my entire abdomen.
Could mum change the locks?

3

Thank you for the reply.

No they never mentioned free care for six weeks, just how much money have you got and if you can’t access it you need to apply to get access through the Court of Protection.

I did wonder about the GP involvement, same GP for mum and dad at the same practice for 60 or more years. I will start that route today, she actually has to see the nurse today to have her stiches removed.

4

You will gather that I’m a scarred survivor of battles with SSD and hospitals, with all four parents.

I would also use words like “unsafe” and “negligent”.

Things may well get nasty this week, SSD are using bullying and intimidating behaviour. They have a duty to make a “holistic” assessment, not just looking at dad, but at others around him too, that includes you.

Try if possible to get SSD to communicate with you via email so that you have evidence of what they are telling you. They can and will deny things they say to you, under certain circumstances.

Also consider making a formal complaint to the Complaints Officer at SSD head office. In Hampshire, we can make online formal complaints.
Also consider emailing the Director of Social Services. This often makes people act, because if the Director knows what they are doing it might damage their chances of promotion!!

Then there is your local County Councillor to involve, then they can kick SSD too.

5

Thank you Bowling Bun your advice is appreciated. This will be my next steps and I will ensure that they respond now in writing. I did give them a 5 page formal statement listing all dad’s conditions, all my mum’s conditions and medication, plus the circumstances surrounding this crisis and a day in mums life, the care mum has to provide and evidence to support how he would be better cared for in a residential setting etc. It was a useful exercise for me so I don’t forget anything.

There are even more circumstances and a back story in that mum also cares for my adult brother age 57 with mild to moderate LD, so whilst he can feed, clothe and wash himself he cannot handle dealing with “services” such as DWP, Healthcare and finances so mum carries that load too. Him and dad in the house are like a volcano constantly smoking and errupting every so often, neither of them having the mental capacity to deal with the other. Like leaving a toddler and a six year old in the house unsupervised.

In the meantime my daughter who has MH issues but was doing well, has had her issues triggered because of the stress to me and arranged to go back to her counsellor, packed her bags and moved out to stay with a friend for a week. How do i tell my daughter with MH issues that she has to leave home because her grandad needs care too?

the nightmare goes on.

6

It is dad who must leave, not your daughter.

What long term plans are made for your brother? My son has LD, lives in a flat with carer support. Are Social Services aware of your brother’s special needs???

7

Hello, Stephanie. Bowlingbun is a wealth of information on this subject, having been through many hard times herself and having to deal. May I just say a brief few words about how I sum up the situation.

Firstly, you have already made good steps in the right direction. It is now a case of following up and making sure the best result is achieved. This may involve a bit of fighting your corner.

Secondly, I entirely agree with Bowlingbun’s last comment. Dad must leave. He really needs to be in a care home in his condition. Because of his savings he will need to self-fund. Mum can’t be expected to cope with this. Her decision may seem hard but it is the way it needs to be. Dad will be better looked after in a care home. They are not such bad places as some imagine them to be.

Thirdly, when Dad is in a care home, Mum will be less stressed and her health should improve and she may have time to make new friends.

So I see Dad as the top priority. Then you can see how Mum, sister and brother are coping under the new arrangement.

8

Gosh, I am bowled over by all your amazing support that i am crying reading this. I can’t thank you all enough for your help.

Hi again Bowlingbun,

Sadly because mum has done all the caring for everyone all these years she has picked up all the caring for my brother too. Just like care for dad, we never knew there were any support services in place and just did what had to be done for the family, until this happens.

With regard to my brother SSD are not aware of him, until I made made them aware over dad these last few days. He has never had any kind of assessment previously, but this whole situation has opened my eyes. When mum set up her LPA and updated her will, we did ring fence my brothers share of any estate in a trust fund so that he could have a better quality of life when my parents passed as he cannot work, he is also quite vulnerable to people who may take advantage of him.

When the urgency of dad has passed and mum is in a better place I will bring up the subject of my brother and start getting him in the system now. I think it would be good for him to have some independence, he is 57 and sleeps in the box room which is tragic in itself.

9

Hi Stephanie,

Just wanted to welcome you to the Forum too. Your dad clearly needs residential care (nursing care, not just a care home). You and your mum will need to stay Very Firm with Social Services and insist that your mum can no longer care for your dad. If you can possibly do so, I would recommend visiting homes now in your local area so that you know which homes to push for. Some are much better than others!

My mum also wanted to stay at home but in the end her needs were just too great for me to cope with and she had to go into care. I had to fight tooth and nail to get her into a care home. As far as paying for it is concerned, Social Services will need to do an assessment of your parents’ financial situation and determine if they need to contribute to the cost of the care.

A very complex situation and you will probably have lots of questions but how do you swallow an elephant, one bite at a time!

Ask away or just rant away, we can probably find some of the answers between us but of course no easy solutions.

Take care, Anne x

10

Thank you Anne, I am so great full for the support from you all
Xx

11

I am concerned about the ring. fenced money your either will inherit. If it’s not in a discretionary trust, and your brother needs help from Social Services, they will expect him to use the trust money for his care until all the money is gone! Double check how it is written.

12

HI BB,

thank you for this. I have got mum’s Will out and it says that her estate will be divided into 3 equal shares with a) two equal shares between myself and younger brother and b) DISCRETIONARY TRUST 1 equal share on trust with the beneficiary being my older brother with SN.

There is then lots of legal jargon about how the trust should be managed and by whom. Mum also had to do a statement at the same time to say how she wanted it to be spent which I completed with the help of MENCAP.

I was present at the Will making and we were quite clear that this share should be spent on making my brother’s difficult life easier. The solicitor told me at the time that his DWP benefits would not be impacted by him having the Trust, so hopefully this sounds right?

13

Yes, that sounds right.
I went to a talk given by someone from Mencap’s Trust department, so that’s one less thing to worry about.
I’m in the process of sorting this out for my own son with LD.

14

good luck x

15

Just one other thing maybe you can help with BB. When you had all your battles for care, had your loved ones had any care at home first?

SSD haven’t called me back yet about the decision on “best interests” but the care home that was hopefully going to provide some respite and can’t now because they don’t have sufficient staff over Christmas have given me the nod that it is likely to be refused, even though mum has told them she won’t be there and will walk and leave the home.

Do we have to accept home care 4 times a day for dad who isn’t safe to be left either alone or with my LD brother? do we have to accept it and let it fail? or is this where next steps are appeal and escalate to the head of the SSD and involve the counsellor.

My husband is talking about as last resort bringing brother to my house, sending mum to other brothers in Surrey and leaving dad in the house alone with the doors locked and then raising an alarm to the SSD.

Oh god I don’t know. I am so stressed. Mum is beside herself and the cardiac nurse has given strict instructions today that she has absolutely not to have any stress in her life or upset at all. Meanwhile she now has a post op infection and is on antibiotics to tackle it. The GP wouldn’t take her stitches out yesterday even though she was 7 days post op because she was shivery (Infection) and instead sent her away with antibiotics and instructions to do a Covid test before she could have her stitches out.

What is my life right now


I

16

The GP must contact Social Services now, to stick up for his patient.
They will listen to him far more than anyone else.
When the hospital wanted mum to come home, they arranged for a hospital bed to go to her empty house and TOLD me when I had to go there. I didn’t.
That made the Ward Sister angry, said she knew mum had a key in her purse, and if neccessary the sister would let the bed in.
I told her that what she didn’t know was that mum had two front doors, inner and outer, mum only had the key to the outer door with her, as the inner door wasn’t usually locked. I had the key, would lock it and keep it locked.
Sister not used to not getting her own way!
Mum never ever went home again. To this day both SSD and the hospital both deny sending mum to the nursing home she went to!!
That’s only part of the story. It makes me wonder though how dad would get in if no one was at the house. Does he have a key??? If so, can you remove it from him???

17

Dad doesn’t have any keys. Hasn’t for years as he loses or hides them. He wouldn’t get in the house, he wouldn’t even know it was his house. I have no idea how SS can consider leaving him alone other than with carers four times a day when he throws paper on the gas fire. Mind you, he can’t light the gas fire so would freeze.

18

Just wanted to update that persistence paid off and dad is now in respite in a lovely care home five minutes from home with social services funding and we are making up the shortfall.

Short term measure for two weeks but he won’t be coming home to mum as long as I’m breathing. As suspected he went off happy, it couldn’t have gone better. I feel like I have a few moments to breathe and gather my thoughts and restock my armour.

Thanks to all, especially BB for your wisdom.

19

Hang on a minute, “we are making up the shortfall”???

How was this explained to you?
How much are you paying?
It should be based on dad’s income alone!

20

Ok, so SSD are paying something like 565 a week and we have agreed to make up the shortfall of 65 a week for the two weeks. I have got a financial assessment form to complete today for dad.

I did google this and the general info I found was that a family member or friend had to make up the shortfall in a better home otherwise SS could move him to a “budget” one.

My focus right now is keeping him in care and dissecting the financials later.

Is there something else I should be aware of?

Dads income isn’t high but he does have around 35k in savings. We are not adverse to paying for his care on a sliding scale or being means tested but knowing his rights would be very useful, especially in this transition period.