1. Expert Q&A: Living well as a carer - Weds 28 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Wednesday 28 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Timebar

    Timebar Registered User

    Jun 13, 2019
    17
    My MIL has recently been diagnosed with Alz. But in some ways the greater issue is my FIL. He first raised concerns with us about two years ago. However, he told the older person's mental health nurse that she cooked daily for them both (untrue, she barely eats never mind cooks) and that he had only noticed changes in her in the last month (huge whopper). When I arranged for a social services needs assessment they declined a visit but spoke with the social worker on the phone. Both told them they were fine and he told a few more lies.

    FIL mobilises with two sticks, has prostate CA, a pacemaker and Type 2 diabetes. He is late 80s. Until MIL went substantially downhill about 6 months ago (when we started the process of getting a diagnosis) they managed between them. He would drive them to shops and she would go in. But she is now reluctant to go out and because she has lost a lot of weight is weak and having her own mobility problems. We have informed the GP. The GP has been pretty good, but as MIL has not given permission to discuss things, we don't know what is going on. We will ask for permission, but I expect to get a torrent of abuse in reply!

    My OH and I have tried to speak with them about LPAs, finances etc and not gotten very far before one or other of them blows up. But the real problems came when we suggested that they might benefit from carers coming in. If MIL won't prepare food it is left to FIL. He struggles to walk, never mind being able to stand up in the kitchen to prepare food! So, they live on bread, cakes and biscuits.

    When FIL was poorly a few weeks back I went in several days for a few weeks and saw the mess they were in. I cooked for them and threw out 10 bags of out of date food, the kitchen and bathroom were not clean etc etc.

    When we had a conversation with them three weeks ago they said they were fine and they had struggled at that time only as FIL had been poorly. They didn't need help, not having strangers in etc etc. I don't expect MIL to understand the reality of the situation they are in, but FIL should. I understand that he wants to support her, but all he is doing is appeasing her. She can get into terrible rants apparently. He doesn't/won't see that in order for them both to remain at home and keep as much independence as possible, they need some help. Its not good for her to be stuck in the house all the time seeing few other people. This won't help her. There will be a crisis sooner or later and then God only knows what will happen to them both.

    OH and I have left them for a few weeks to struggle on and for it (hopefully) to sink in with FIL that he can't do what needs to be done in the home. They would have to pay for care themselves, but he won't spend a penny if he can help it. He won't even pay for someone to mow the lawn and said that he and MIL "will try and do it between them" There is no way we will be doing it. FIL needs to spend his money rather than trying to guilt trip us into doing it. OH is down thousands of pounds paying for things over the years that FIL/MIL just won't spend their own money on.

    OH has never had a very good relationship with them. In the 9 years I have been with him they have never shown any interest in him as a person in his own right. He is their only child. We are both at our wits end with them. We'll try once more to speak with them, but after that, well...who knows?

    Sorry for the long post... is anyone still awake? Any strategic advice would be very welcome :)
     
  2. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    387
    Female
    High Peak
    Incredibly frustrating for you. My BF's father and step mother were in that position a few years ago. No dementia, but he could only manage a few steps with sticks, she'd had a stroke, totally unsuitable cottage so they were houseband. Their reaction was exactly as you have described with your inlaws - we can manage, we don't need help, etc. Refusal to spend any money and he had plenty! His answer was always yes, he would consider those things if it became necessary but for now - no.

    I think you are doing the right thing by backing off even though it might feel cruel. Sometimes you just have to wait for a crisis. But you know them best - could you play on his fears and desire to remain in his own home? Maybe tell him that if SS find out what a state they are in it will mean a care home for both.... unless they agree to have carers in.

    Hope you find a solution - it's really hard to persuade a stubborn person who is in denial!
     
  3. canary

    canary Registered User

    Feb 25, 2014
    9,880
    Female
    South coast
    Hello @Timebar and welcome to DTP

    It is very difficult when people refuse any care, but somehow expect family to then fill in the gaps. I think you are doing the right thing by stepping back .

    I think it would be a good idea to write down all your concerns in a letter to their GP. The GP may not be able to talk to you, but having this information (which will go in their file) means that s/he is aware of the true situation.

    Reading your post makes me wonder about your FILs cognitive state too. Im wondering whether this is the reason that he doesnt seem to understand their predicament. I have a feeling that you are right when you say that there will be a crisis, but at least then they will get the help that they need.
     
  4. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    I think the only thing you can do is stick to your guns. If they don't think they need help, you are unlikely to be able to persuade them. But if they do ask for help, insist that they need to pay for care. It does sound like you'll have to wait for a crisis, which is often a fall or other reason for a hospital stay.

    My grandparents refused care until very late on, my grandmother had (undiagnosed) dementia - she wouldn't even visit the doctor for a diagnosis - and my grandfather was in his late 90s and frail with very limited mobility. It was only in the last year of their lives they finally allowed carers in.
     
  5. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    653
    "Reading your post makes me wonder about your FILs cognitive state too. I'm wondering whether this is the reason that he doesn't seem to understand their predicament."
    This sounds very plausible - we didn't realise how much my aunt was declining until her husband, who had dementia, passed away.
     
  6. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    976
    Female
    Dorset
    I found the best way to get reluctant spenders to agree to donating LPAs was to point out that if they had an accident or a stroke, (never mention the D word), and they were in hospital you would need to arrange payment for bills etc. and, especially if they had a stroke and were incapable of looking after their own money then it would have to go through the Court of Protection and cost so much more every year for them to authorise it, not just the one off payment to sign one now! The thought of CoP taking large swathes of their money seems to concentrate their mind wonderfully! It has worked twice for me and it’s the truth!
     
  7. Timebar

    Timebar Registered User

    Jun 13, 2019
    17
    Thank you all for your replies.

    We often ponder on FIL's cognitive state too, but more around personality disorders. OH says he has always been like this. He has a lot of the of traits of a narcissist.

    We saw them on Sunday as it was Father's day. We phoned him first thing and he said that she had been so nasty to him he doesn't consider her to be his wife any more. I'd love to know what she said. But, apart from some sniping at him she wasn't too bad when they visited for lunch.

    We got him a sock aid as MIL was refusing to help him put his socks on any more. You have to laugh don't you? He worked that out alright as he is mechanically minded. I didn't have a clue. That'd be a good test for dementia! MIL said that she's had enough of doing stuff and she isn't doing any more. A good part of me wants to cheer her on. He can't have been easy over the years. OH says she should have left him years ago.

    I went round on Monday. Wasn't sure what I was going to get from MIL as she had been foul to me three weeks ago. But she was in a happy place and really pleased to see me. She was how she was about a year ago, with only a few bits of confusion. Said she was fed up with the same old food. I'm not surprised. He's hampered her trying even normal food to many others their age. He thinks pasta is foreign muck. His idea of a salad is a bit of limp Iceberg lettuce, cucumber and a tomato. No dressing.

    I've decided that I will not do any household stuff for them as he needs to struggle on and admit that he needs help. I will take the odd meal round there. It will be Macaroni Cheese next. I suspect MIL will enjoy it, but FIL won't. He has denied her so much over the years...it's sad really. Now she's losing her inhibitions sometimes, perhaps she's telling him what she really thinks. I will however continue to sort all the paperwork out

    I got her to sign the AA application form that's been left with them for weeks. Feels like huge progress! Next step is the LPAs and wills, but I'll wait for a day when she's in a good place. I've looked at the charges should we have to go the Court of Protection route in future. £385 per application, and we'd need four of them. £100 assessment fee for a new deputy. Some security bond for property and affairs. Then the annual supervision fees of up to £320 per year. Hopefully this will be enough to horrify FIL as you say Banjomansmate! OH says if it comes to this he won't be a deputy and that a solicitor can do it. Watch the fees soar even higher.......
     

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