Dad doesn't want change

[sadjane]

Hello
I am a new member, although I was previously a member when my mum had vascular dementia - she died nearly 10 years ago. Now my dad has recently been diagnosed with (moderate) Alzheimers, and I'm struggling. He lives alone about 50 minutes from me, and is extremely frail. SS are not involved and Dad doesn't want to apply for Attendance allowance even though he's lost the use of one arm, has fallen twice, and is barely able to get out of his door into the garden, never mind anywhere else. The main difficulty at the moment is that he won't accept any kind of change or alteration to his life at all. He doesn't want anyone else at all, other than me, to be involved in his life. Like many others on this forum I have a sibling who lives elsewhere and isn't really involved other than infrequent flying visits. He's unable, or possibly doesn't want, to make decisions about such things as LPA or future care needs, and gets very annoyed when I bring up the subject. He has paranoia at times and I think he doesn't trust me or my brother, and especially not our partners, to be attorneys. He cared for Mum (with a lot of unacknowledged help from me) until a crisis finally forced him to let her go into a NH which he resented. I can see that he'll very soon need personal care ie. help to shower, dress etc but he doesn't want to know. I do his shopping & gardening and help with the laundry, and I fear he expects that I'll also be his personal carer, which I don't want to do. He's already mentioned suicide ('not that I would do that' he said) and I'm frightened that forcing any issue might make him go and take an overdose or something. He would hate me to talk to anyone else about him - he's such a private man. I am also getting into financial difficulty paying for fuel to get to & from him, which will only get worse as I need to go more & more often (I go 3/4 times a week so far, and take him to all his appointments etc as he can't get anywhere by himself). If anyone has any advice I'd be grateful - thanks. Btw I rely on the local library for internet access so there'll be a delay in my posts.

 

[Bod]

Welcome back!
Could you use the knowledge gained from your mothers experince?
Contact Adult Social Services, explain he is a "Vunerable adult" and his personal situation, let them deal with him, just be there in the back ground pushing.

Good luck.
Bod

 

[marionq]

Would you be eligible for caters allowance for your time? I would think you could apply for AA and reduction in council tax on his behalf.

 

[nitram]

Can you contact his GP?

If so alert them to the situation, a copy of you post would be ideal as it is a good summary.

The GP can't discuss details with you but has a duty of care to your dad and should investigate and take action as needed.

 

[Shedrech]

hello sadjane
it's good that you knew TP is here to support you; sad that you have to return because of your concerns for your dad

I do agree with the others, just go ahead and organise/apply for any support on offer - your dad may refuse to co-operate, at least his situation will be flagged up to his GP, his Local Authority's Adult Services and anyone else you contact

I think there is a space on the Attendance Allowance application forms to explain the you aren't the person who is the subject of the application and why you are applying on their behalf - have a look online
https://www.gov.uk/attendance-allowance
once that is in place, you can apply for Carer's Allowance if you are eligible
your father also has a right to a reduction in Council Tax - apply for him; tell him everyone his age has a right to this and you think anyone would be daft not to apply for it as it's worth hundreds
maybe if you tell him that you will not be able to come to visit him unless you can access the Carer's Allowance, he will think again about his finances
maybe get the POA forms and have them filled in, with your 'witness' ready and briefed (a family friend will do) so that instead of talking with him and explaining/arguing, you just set the forms in front of him ...
as for the emotional blackmail he's using; whatever his state of mind, that's just not fair on you - maybe throw it back at him and say you can't continue caring for him if he doesn't agree to filling in all the various forms, as you need support (only you know your dad well enough; mine would do anything if he thought it would help me)
I'm afraid you're going to have to be sneaky for your dad's good and for your own health and welfare which matter just as much as his
best wishes

 

[sadjane]

Thanks you very much for your support & advice Bod, marionq, nitram & Shedrech - its such a relief to have people to talk to - people around me have no clue about what dementia means to us and our lives. Bod, Its good advice - I suppose I am using the experience with Mum in that I remember Dad refused all available support (except from me & my husband) and basically shut them both away from the world so I know he's doing the same now its him who's ill, so I need to react this time around.
The bloke from the adult services didn't want to know as soon as he realised Dad would be self-funding, advising me that it'd be far better & cheaper to arrange services ourselves as Dad still has 'capacity' but he did say I should contact them again if Dad 'loses capacity'. How do I know when that is? He seems unable to make decisions but he's always been like that anyway due to analysing every option to the nth degree until unable to decide! He can talk so intelligently about politics etc and seems fine most of the time yet has forgotten how to use his dryer (which upsets him greatly) and does bizarre things eg. hiding things. Yeterday he said he doesn't think his memory is 'too battered yet' so I think he's in denial.
Looking at the Attendance Allowance guidance, it looks as if I'd need to already have poa or Dad to be terminally ill with <6 months to live, but I think I'll check that at my local CAB.
As for the emotional blackmail, I struggle to believe he's actually doing this to me! although I know its true... If I tell him I can't continue to visit for whatever reason he's likely to tell me to 'go away then'. He's already told me not to come again if I don't like what I find (a few months ago when I was doing some cleaning for him)
Yes I know you're right I just have to summon up the courage! I can see there's no other way, although I might go back to his GP for back-up as nitram suggests. At the end of the day, I love him very much & don't want him to suffer but he's making it very difficult!

 

[Bod]

Being a "Self funder" may be an advantage.
Find a Care firm that really understands what dementia really is.
Maybe over time, one of their carers could "befriend" him, a 1 minute call, just to see him up at the door. Leading eventually to a full blown care visits, maybe weeks/months later, as required. It will take time for him to accept care coming in, a good Care firm will understand this.

Being LA Funded, he would get care visits, but if he was uncooperative(!) they would stop.

Bod

 

[Pickles53]

Not much I can add but I would make it clear where you stand on personal care at the earliest opportunity. I couldn't have done that even for mum let alone dad and you are 100% justified in making that a 'red line'. To me it changes the relationship from 'daughter' to 'carer' though I know that others feel very differently.

I'd also be honest about the financial difficulties you are facing and get cracking on the AA application. This is money that could be spent on (for example) taxis.

At the moment he is able to live as he chooses only because of your support. So he's not having to consider the consequences of his refusal to entertain any other help. If he won't change, you may have to change what you are prepared to do. This is not selfish. Your needs are as important as his, and if you go under (either financially or from stress) he'll be totally stuck.

 

[sadjane]

Being a "Self funder" may be an advantage.
Find a Care firm that really understands what dementia really is.
Maybe over time, one of their carers could "befriend" him, a 1 minute call, just to see him up at the door. Leading eventually to a full blown care visits, maybe weeks/months later, as required. It will take time for him to accept care coming in, a good Care firm will understand this.

Bod

I hadn't seen it this way - this seems like a strategy that might just work with Dad - thanks Bod.

 

[sadjane]

Not much I can add but I would make it clear where you stand on personal care at the earliest opportunity. I couldn't have done that even for mum let alone dad and you are 100% justified in making that a 'red line'. To me it changes the relationship from 'daughter' to 'carer' though I know that others feel very differently.

Thanks Pickles53 for your support over this issue - I found myself in the position of having to do some of Mum's personal care, and I have several traumatic memories from that time eg. cleaning her after faecal incontinence with poor Mum totally unaware, and she'd have hated that I remember her like that. I did help her in the NH with feeding though, which was a valuable connection with her, on the few occasions when Dad wasn't there and I could have time with her alone, although I don't think she knew me by then. I can't do personal care for Dad - the relationship would indeed change in a way I just don't want.
Re. finances & visits etc: I can see I need to summon up the courage to be honest & upfront with Dad - I've been shying away from what I know will turn into a confrontation however sensitively I attempt to broach these issues.

Once again, dementia is reminding me I'm not the strong person I'd thought I was but I need to become that person, so thanks again all of you who replied to me, for your support.

 

[Perfectdaughter]

I agree with the good advice you’ve already had from others. I found myself in your situation 2 years ago, my widowed father in denial about his newly diagnosed Alzheimers and vascular dementia. His GP advised me that I should look at private/voluntary help as Social Services are so overwhelmed.
I started by persuading him to have someone come in to clean once a week – took me months, as he was adamant that he didn’t mind the mess and that he could manage and that he didn’t want me to do the cleaning – I told him I couldn’t bear to see the squalor he was living in since my mum died and he gave in. Then when I realised he was forgetting to take his medication I got him to accept 3 visits a week from a local woman who would check that he was up to date with his dosette box on the days that I didn’t visit. She was prepared to help him in the kitchen and make lunch but he wasn’t having that so she would just drop by for 5 minutes and a little chat. This patchwork worked for a year but I realised he needed additional support. I found an excellent agency close by who were very helpful - my father accepted the senior manager they sent to assess us as she was a nurse (authority figure!), but with a lovely manner, she understood about dementia. This support was worth the expense – the system worked for a year and my father grew very fond of the carers (we called them helpers). Then he fell and broke his hip and once he returned home from hospital he had to accept live-in care 24/7.
As my father’s condition has worsened I am so grateful that we got Power of Attorney when we did – it has been helpful both for finance and for medical. Shedrech’s idea of having the forms filled in and ready to roll without fuss is a good one. I managed to get my father to sign his one day when he was in a more amenable mood.

 

[sadjane]

I agree with the good advice you’ve already had from others. I found myself in your situation 2 years ago, my widowed father in denial about his newly diagnosed Alzheimers and vascular dementia. His GP advised me that I should look at private/voluntary help as Social Services are so overwhelmed.
I started by persuading him to have someone come in to clean once a week – took me months, as he was adamant that he didn’t mind the mess and that he could manage and that he didn’t want me to do the cleaning – I told him I couldn’t bear to see the squalor he was living in since my mum died and he gave in. Then when I realised he was forgetting to take his medication I got him to accept 3 visits a week from a local woman who would check that he was up to date with his dosette box on the days that I didn’t visit. She was prepared to help him in the kitchen and make lunch but he wasn’t having that so she would just drop by for 5 minutes and a little chat. This patchwork worked for a year but I realised he needed additional support. I found an excellent agency close by who were very helpful - my father accepted the senior manager they sent to assess us as she was a nurse (authority figure!), but with a lovely manner, she understood about dementia. This support was worth the expense – the system worked for a year and my father grew very fond of the carers (we called them helpers). Then he fell and broke his hip and once he returned home from hospital he had to accept live-in care 24/7.
As my father’s condition has worsened I am so grateful that we got Power of Attorney when we did – it has been helpful both for finance and for medical. Shedrech’s idea of having the forms filled in and ready to roll without fuss is a good one. I managed to get my father to sign his one day when he was in a more amenable mood.

A heartfelt thank you for sharing your & your father's story Perfectdaughter. My father sounds uncannily similar to yours, so your achievements re your father's care give me a lot of hope. I've begun with the same approach as yours re cleaning, so far with no success but I'll keep at it. I tried a dosset box a few months ago with Dad's agreement, but the following day he emptied it out. I'll try again though as he might accept it now. Yesterday I had a breakthrough when Dad agreed that I order some of the Alz Soc factsheets & booklets for him to read (including POA). However he again spoke about how he doesn't want to become 'completely useless' and would prefer to simply 'go to sleep'. Its heartbreaking. I'll get the POA forms ready so I can produce them as soon as Dad has read the relevant booklet, and hope he agrees. My best wishes to you and your father.