1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. MrsDoyle

    MrsDoyle Registered User

    Mar 28, 2019
    43
    Female
    East Mids
    My 0H was diagnosed with mixed dementia, vascular and Alzheimer’s in March this year. We have only been together five years and I am not married to him.

    He is very forgetful, repetitive and has bouts of confusion. But I feel he still functions pretty well and he can hold a great conversation with other people and he still has good personal hygiene.
    In fact, he’s better than he was earlier in the year. I think this was because he had flu after Christmas and then shingles and it really knocked him sidewards. He used to sleep much more than he does now.

    My problem is I feel he is fine to be left on his own for various lengths of time, especially in the evening ( I have book club etc) when he just watches TV and then will go to bed. The occupational health visitor says that the only time he needs supervision is if he’s learning something new and for meals and meds. The biggest problem as I have mentioned before on this site is that he thinks he can still drive so I have to hide the car keys.

    The problem is that his daughter believes I have been negligent as I have had a few nights away. She has covered for me whilst I’ve been away ( during the day) but she felt I should’ve cancelled these events which included a wedding and a bday gift concert. My 0H was invited to some of these events but he chose not to go. I put detailed plans to her and exact times of when I wouldn’t be here but she reported me to social services because she was worried for his safety and well-being. We are having a family conference on Wednesday and I am led to believe that she has been planning to create a fire storm and she is gunning for me. I think she wants to have professional care in and me to leave..

    I have always kept my own friends through my marriage to my late husband and my present 0H is very happy for me to carry on seeing my friends when I want. He is very capable of keeping to his routine and I think his daughter has gone over the top. She believes I shouldn’t leave him on his own for more than an hour. I’ve had to take him with me for some things he didn’t want to do which is annoying for him.

    I have told him that I don’t know how much I can take with his hatred from her but he says he just wants us to be together and I should ignore her. But how can I?

    Am I being negligent? He has never fallen although he does have a few minor dizzy spells, he has never wandered and he has never been aggressive to anyone yet. I thought I could do these things whilst he was still capable because I know that later on I will have to completely change my lifestyle. I have already given up several things and I am a lot younger than him, he is nearly 80. I think the world of him and I am very happy to carry on looking after him knowing that it will become progressively worse. I am beginning to wonder that his daughter, who doesn’t work and doesn’t need to, resents being put out. They’re talking professional help, not themselves helping.

    I will never forgive her for reporting me when I’m trying my best at a sad and difficult time.
     
  2. tss502

    tss502 Registered User

    Oct 20, 2014
    109
    Hi,
    I think you know best what's needed for your OH, after all, you are the one spending most time with him and most aware of his needs. When my OH was diagnosed he initially spent a lot of time at home alone, including overnight, as I am working full time and also sometimes needed to be away for work. I think for the first year we continued with our normal routine, and he would be at home overnight alone and during the day on a regular basis. We only started to put other arrangements in place as his condition progressed and it became clear that this was no longer appropriate. These arrangements included professional carers for part of the working day, who initially assisted him with social activities, but later ensured that he was safe and had regular meals (arrangement extended to all the time that I was out at work), and for occasional overnight stays.

    It's important for you to try and stay independent and keep up with your hobbies and interests as it's so easy to lose all of these when caring for someone with dementia, and to become very isolated as a consequence.

    I would suggest you explain at the family conference how things are now and how you've assessed any risk of him being left alone. You may need to demonstrate that you've considered how he can prepare regular meals and drinks for himself, get himself to bed and get up and get dressed without prompting and support etc. You may have already put some strategies in place to support this, such as leaving him sandwiches or a ready meal. It may be that he is able to prepare a meal for himself, but the key is to show that he has capacity, or that you've put some work-arounds in place to support him.

    Many people with dementia live on their own and don't have the benefit of a partner with them 24/7 so this is not an unusual situation, and I think social services will just want to be assured that you are both able to manage the situation effectively.

    It might also be helpful for you to be able to take this opportunity to talk to them about what support would be available as his condition starts to decline, and how you can access this. You can use it as an opportunity to start to have those conversations and signal to social services that you are thinking about the future. Ask for a care assessment for him and a carer's assessment for yourself, and remember that, as part of the carer's assessment, you have a right to be able to continue to access social activities for yourself.

    As for the daughter, is it worth exploring with her whether she wants to be a bit more involved in her dad's care and whether she might occasionally stay with him overnight? It could be that she is looking for ways to be involved and support but is unclear about how she can help, and anxious about the situation so is lashing out?
     
  3. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,028
    Nottinghamshire
    #3 Bunpoots, Jul 30, 2019
    Last edited: Jul 30, 2019
    @MrsDoyle you have no obligation to look after another adult so you can't be negligent whatever his daughter thinks!

    I agree with tss502 that this would be a good opportunity to discuss future (and present) care needs with SS and find out what is available in your area. TBH I think your OH has hit the nail on the head when he says ignore his daughter. I know it's not easy to do but she has no right to interfere in your relationship with her father.

    She could be worried. It might be worth trying to have a conversation but you are the one who will know when it's not safe for your OH to be alone. My dad lived on his own with support during the day until he reached the later stages of the disease. Once he needed 24/7 care it was obvious.
     
  4. Bree

    Bree Registered User

    Oct 16, 2013
    241
    Mrs Doyle

    I had an emergency life line for MOH, so that I could go out, and leave him unattended. His alarm was connected to a monitor, so that if he fell, it was triggered automatically, or was in trouble he could use the emergency call button, this was strapped to his wrist as you would a wrist watch. This might help you.

    Also since MOH's passing, I have been on the receiving end of criticism from my step daughter regarding his funeral arrangements, but our son says it's up to me, we have been married for 45 years, I knew him best, and what he would like.

    Your partner's daughter may feel she has cause to raise concerns, on the other hand, she might just be criticising because she can.
     
  5. Lawson58

    Lawson58 Registered User

    Families can be such difficult things to manage and you have my sympathy on that score.

    My husband was diagnosed over five years ago and is still functioning very well most of the time.

    Two years ago, I went to Queensland for four nights to celebrate my sister's 80th birthday. I was OK about leaving him as my daughter was going to check on him and I phoned him often, No problems. Last January, I went to meet my sister in Canberra for two nights but I could only go because my granddaughter came and stayed with him. The changes in him have been slow but there are still many things he can do.

    You know better than anyone how your partner is doing and I am wondering if he still has capacity as that will make a big difference to how this goes. If he still does have capacity and is willing to express his wishes then his daughter won't be able to exert as much control as she thinks. Also, if he still has capacity, then it would be a good idea to get Powers of Attorney in place.

    Do you think the daughter has her father's will on her mind?

    Families! Especially when they are complicated!
     
  6. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,651
    Female
    I imagine SS will ask your OH what he wants - that tends to be SS's priority. If he says he wants to stay at home with you caring for him, that will very probably be what they deem is best for him. If the daughter wants to 'get professional help' maybe she could pay for a carer to stay overnight when you are away, and fill in at other times if necessary. I can't see there is any reason at all for her to lever you out of the situation. I don't know if your OH can self fund, but if the daughter is expecting SS to pay for care when you are available and willing, she will be disappointed! Does anyone have LPA?

    SS may send OT in to check the house is as safe as possible, and offer any aids which will help.

    I don't know how you deal with the daughter, but hopefully the meeting will have a positive result for your and your OH, and she will have to step back.
     
  7. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    474
    Female
    High Peak
    So this dear daughter expects you to give up every aspect of your own social life to care for her father, yet has no intention of doing any 'hands on' care herself, even though as you say, she has no work herself.

    I think that says a lot about her. And reporting you to social services is unforgiveable. I'd be very careful how you handle her going forward. But as others have said, SS will go with what your OH wants and it sounds as though he doesn't need 24/7 care right now anyway.

    I'm a little concerned about this statement: I think she wants to have professional care in and me to leave..
    Reading between the lines.... is this because you've only been together for 5 years and daughter considers you some sort of johnny-come-lately interloper? Are there financial implications? Beware her motivations! And stick to your guns - you know more than anyone what's right for your OH.
     
  8. MrsDoyle

    MrsDoyle Registered User

    Mar 28, 2019
    43
    Female
    East Mids
    Thank you for all your replies, they have been supportive and informative.

    I think his daughter believes he is much worse than he actually is. He has improved so much since he recovered from shingles as I mentioned before.

    He can afford self-care and they are prepared to pay for it. LPA is in place but he hasn’t given them permission to go live yet and he still has capacity. It was me who suggested they got it in place to protect him from a previous person. It’s in his son‘s name, well the financial side is. His daughter is not after his money nor am I and I know I’m not remembered in his will.
    I am happy to have technical help such as panic buttons etc. and I think his daughter is already in the process of purchasing these items.
    Since I wrote my post, SS have been round to talk to my 0H about his wishes ahead of tomorrow’s conference because he won’t be there; the family feel it may be upsetting for him. I feel quite a bit better after seeing this man from SS but I shall feel so much better when tomorrow is over!
     
  9. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    1,176
    Female
    Dorset
    At one point I was asked by SS how long I had known The Banjoman when we were talking about arranging care for him. As I have LPAs for him, at his specific request, I wondered if they wondered if I was muscling in, (although why anyone would choose to take on a dementia patient just for the fun of it I have no idea). I was able to say that we had been close friends for over twelve years and I had known him for nearly twenty years and had been caring for him for the past three years! That seemed to be an acceptable time!
    His daughter kept pushing to take over “arranging” things last year but I was able to say that I do it all because that is what her father wants. This way, if anything goes wrong I know any mistakes are mine and I know what to put right.
    Like you I know that I would get nothing in his will and I wouldn’t expect to anyway. If he had his way I would be his executor too but I refused that one.
     
  10. MrsDoyle

    MrsDoyle Registered User

    Mar 28, 2019
    43
    Female
    East Mids
    Thank you. The daughter has already taken over the ordering of household aids and I know she’s going to try to tell me what to do at today’s meeting. I will have to be restrained so as I don’t tell her what she can do! Four months ago I was the bees knees and now, after having to cover for me a few time- which wasn’t always necessary, I’m the pits ‍♀️ Oh well, must get ready. Wish me luck!
     
  11. Susan11

    Susan11 Registered User

    Nov 18, 2018
    1,505
    Thinking of you . Fingers crossed all goes well. Try to keep calm ...i know easier said than done ...
     
  12. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,651
    Female
    Your OH has capacity, yet will not be at the meeting because it will upset him? If he has capacity, surely there should be no meeting anyway, he can make decisions for himself without input from SS or anyonelse.

    Let us know how it goes.
     
  13. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,233
    In the UK financial assessments for care costs are calculated based on the income/assets of those requiring the care. There is no requirement for family to pay for care if the individual is not able to do so themselves. With regards to social services 'forcing the sale of a house to pay for care', if the partner remained living in the house it would be disregarded as an asset and would not have to be sold, regardless of whether the partner was the sole owner or not. There's been a lot of rubbish published in the press and on the internet lately about this but Social services would not legally be able to force the sale of the house if one partner went into care and the other remained living in the property.
     
  14. MrsDoyle

    MrsDoyle Registered User

    Mar 28, 2019
    43
    Female
    East Mids
    Thank you once again for your comments. I survived but I’m battered and bruised

    I’d better not say all what was said but it wasn’t pleasant. I felt like I was in court.

    My OH and the family can afford self care but the only thing I will say is that they think I should pay for outside help if I have something I had booked and they can’t cover, or cancel it, and I can’t afford outside help. I have always had a bit of my own life so it’s hard to give it all up at once.

    There were some positives and some things were cleared up but I still feel like they’re working towards edging me out and would rather pay loads more than have me here. It’s such a shame as my OH and I have lovely times together and I’m trying my best.
     
  15. MrsDoyle

    MrsDoyle Registered User

    Mar 28, 2019
    43
    Female
    East Mids
    The meeting was a family conference to try to resolve differences and work together for my OHs sake.
     
  16. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    1,176
    Female
    Dorset
    But nobody thought it important enough to ask your other half exact.y what he wants? Presumably he is more than happy with you caring (in all senses of the word) for him or you wouldn’t still be there!
     
  17. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    I find it bizarre that his family will happily pay thousands of pounds for 24/7 live-in care if you leave, but demand that you pay for someone to cover you when you dare to take a couple of hours out
     
  18. Ohso

    Ohso Registered User

    Jan 4, 2018
    156
    You mention you feel they want you to leave, could it be they are protecting against you having a claim to stay in 'his' house?

    I would be inclined to take any decision to your OH, in front of them, make sure you never engage in discussions unless he is available for input, so as soon as anything is mentioned or suggested go straight to him and say....'XXX is suggesting I .......I would prefer to do this, what do you think? '

    I think there is a way too that if he has capacity he can forward plan what happens, so for example, stay at home as long as possible with you, or go into supported living, even with LPA the family wouldnt be able to go against his wishes as they are duty bound to do what he would want if he had capacity, which is clearly have a life with you.

    I would also bring decisions up while professionals are there and ask them to make a note of what he wants, that way there is a record to refer back to if the family try to go against it.

    It sounds to me that you have worked your life together perfectly suiting you both up to now and although changes will probably need to be made it may mean you giving up your freedom, I would say go along with getting carers, as many and as often as needed, then when making plans contact the person who is paying for the carers and let them know you are to be away and push it onto them to make alternative arrangements, suggest family take a turn if they are worried about the costs going up, families are strange sometimes. xx good luck
     
  19. Rosie56

    Rosie56 Registered User

    Oct 5, 2013
    75
    Unfortunately all sorts of weird personal agendas can come up when someone has dementia - I'm not saying this always happens, but it can. Before my mum went into care, she insisted on staying at home where she was living alone. I live in another county and it's a long, exhausting drive. Before she developed dementia, I asked her to come and live in some sheltered housing near me, in a lovely flat a few minutes away from my place, but she repeatedly refused. So I phoned her every day and spent a lot of time micro-managing her life from a distance, all her care needs, bills, entertainments, finance, etc. First one neighbour got on my case saying Mum 'should be in a home, and it was neglect' and that I was 'a disgrace'. I had a lot of trouble with her spreading lies about me until I got a social worker to say, in front of another neighbour, that I had no choice, I COULD NOT move Mum into a home against her will. That shut up the evil tongue for a while, but more recently that neighbour's crony has also been on my case, attacking me because I don't drive up every weekend (never mind that I had a job where I worked weekends!). She even treated me to an abusive phone call when Mum was in hospital and I was driving up and down - because Mum's lawn was overgrown! Neither of these women has the slightest idea what I actually do for Mum. I sometimes think they are putting on a parade of virtue to cover up the fact that they dropped her and stopped visiting her as soon as she began to ramble and to be incontinent. Possibly your OH's daughter feels she should have done more for her dad in the past, and this is her clumsy and insensitive way of trying to put things right. She may not even realise that's what's going on.
     
  20. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,651
    Female
    @Rosie56 that is a very interesting thought. I had a similar (less bad!) issue with my mother's neighbours. They were also her friends - or used to be pre dementia - and the constant theme was that I was 'not doing enough' despite her having carers in for 4-6 hours a day. They still insisted she needed to be in a care home, way before she actually did (one of them thought the fact that mum could no longer remember her name meant she needed to be in a care home!) I think you are right there is guilt going on from them, but there is also "I don't want to see this any more". They just wanted her out of the way so they didn't have to see her deteriorating. Once she had moved to the care home, for them it was as if she'd died - no further contact. (My mother was self funding and fairly compliant, so there was no argument about moving her when the time arrived.)

    I think you may be right that the daughter in this case wants to 'do' something, but I think there is also considerable hostility towards to the OP. She is providing free care, and you would think they would appreciate that and support her (e.g. by paying for care when the OP goes away) rather than obstructing her.
     

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