My Father

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My father has refused an appointment with the Memory Clinic.He is 79 and his short term memory is really bad. He also refused an Adult Social Care assessment. He lives alone and has lost a huge amount of weight. He is not eating properly and not taking his medicaiton although blister packs have been provided to prompt him. I have written to his GP and they are aware of my concerns and it has been noted.

I am frankly worried he is becoming a danger to himself. Today I went round to prompt him to take his tablets and he said the microwave had stopped working - it was not plugged in. He is very confused and although we have a cleaner going in 2x a week to help, she says he is not eating as she is checking the fridge - he keeps telling me he has fish for dinner nightly. He gets quite aggressive when I try to tell him he needs help. He is also very depressed and is not leaving the flat. He had a heart scare back in March but as far as I can see his physical health is not too bad but his mental health is failing.

If he was diagnosed with dementia at the memory clinic he would be entitled to help.

Any ideas please or how did you cope if you were ina  similar situation.    

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  • Posted

    If you believe that your father is a danger to himself then the doctor must arrange a home visit for your father to be assessed whether he wants to or not.

    He's entitled to help without a diagnosis from a memory clinic, although if things are this bad the psychiatrist should make a home visit.

    You need to make it crystal clear to Adult Social Care that your father is no longer able to care for himself.

    You also need to get, as a matter of urgency, an Enduring Power of Attorney, which gives you the right to deal with your father's health affairs and financial affairs without his consent. Your solicitor will explain how to do this and your GP can sign to say that he believes that your father lacks mental capacity to deal with his health and financial affairs as a result of dementia.

    The Alzheimer's Society can also help you with a host of other things. Phone them on Monday. This cannot continue any longer. Your father is in danger.

    Apply NOW via the district nurses for Continuing Health Care funding. It is not mean-tested.

    Hope this has helped.         Tess.

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  • Posted

    I have been in exactly the same situation - twice in fact, once with my mother and then with a friend. This is a very tough one. There's absolutely nothing you can do to force your father to go to the memory clinic. In any case, if you live in the UK you might not get a diagnosis even then.

    After years of fighting I finally managed to get an appointment for my mother with a gerontologist. I had to use all kinds of subterfuge and coercion to get her there. When the gerontologist ran the test, my mother wasn't able to remember any of the words given to her, even immediately afterwards, she didn't know where she was, said it was 1979 (it was 2006), didn't know her address or her date of birth, couldn't even say what season it was. But she'd always been quite good with words and a real whizz at mental arithmetic, so she correctly named all the articles she was shown and had no difficulty with the one where you start at 100 and keep subtracting 7. We couldn't stop her. She got all the way back to 2. The result was that she was diagnosed as cognitively normal. This at a time when she couldn't even find the toilet in her own home and was relieving herself in corners. The situation only came to its sad end when she had a minor fall six months later and was admitted to hospital, where she died of malnutrition.

    I don't want to depress you, and I'm sure some parts of the UK are better than others, but be prepared for a difficult time. This was in the South-East. A friend living in the West Midlands fared slightly better when she effectively had a nervous breakdown because of the stress of coping with her mother, and went to see her own doctor, who was in the same practice as her mother's doctor. This resulted in a home visit from her mother's doctor, and eventually an assessment and establishment of a care package. If you are in the UK, I think it depends very much on the post-code lottery.

    In the case of my friend (who wasn't much older than me) we were helped out by sheer serendipity. Her family basically kidnapped her, telling her they were taking her back to her native US for a holiday then holding her against her will for four months, before discovering they could neither cope with her themselves nor get her forcibly committed, and returning her to my care in Belgium at 24 hours' notice. By this time she'd lost all confidence and was prepared to admit she couldn't cope with living alone. I confess I took advantage of this situation and was able to pressure her into going into a home almost immediately, where she spent two very happy years before her condition deteriorated. However, she had money and the Belgian elderly care system is much more accessible than its UK counterpart. Is there any way you could get your father out of his familiar environment for long enough to provoke a similar loss of confidence? I know it sounds cruel and it's very risky, but it could provide some kind of solution.

    Also, does your father own his house? If you're in the UK this can make a big difference. I believe the fact that my mother was in social housing counted against her. If there's a house that can be sold, the authorities are often more sympathetic to requests for care. I know that sounds bleak and cynical but it seems to me to be how the system works.

    Do you have a local branch of Age Concern (or whatever it's called now) or some kind of dementia support group? It's worth googling what's available locally. Support groups of this kind can offer a lot of practical advice.

    Believe me, I know just how alone you feel with this worry. But remember there are millions of people all over the western world who have lived through this, are experiencing it right now or who can see it coming on the horizon.

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    • Posted

      No Lily my father no longer ownes his own house - he now  lives in Shetered Accomodation. He does now have a social worker and he has carers starting on monday - they will assess him and this is free for 6 weeks. My worry is if he will let them in...but if he does not, then it will be reported back to the GP. I phoned GP Friday afternoon - he would not come out for a home visit,  but asked me to bring my father down. My father refused to go. I am my husbands carer and he is 77 and not in good health so I am very limited to what support i can offer my father.

      I think from talking to the Social Worker who is very very good, that we are in a 'grey' area with mental capacity which is fliud. The lady who is doing his cleaning is actually a neighbour and friend and has her own care agency so she too is talking to the social worker - her aunt and father had dementia so she is very experienced. We are trying to monitor his tablets but frankly that and the weight loss are our main worries. I would imagine if he does not let the carers in, this could trigger a home visit from the GP, and maybe eventual sectioning if he is neglecting himself? The strange thing is when I phone every morning he insists he is taking his tablets and eating but as Karon says, they are still in the blister pack and the food he says he has had that night is still in the fridge! But this has been passed onto the Social Worker and the GP so they  are aware and do have a duty of care.  

      Yes i do realise it is not going to be easy! I do not have an easy relationship with my father so that does make it harder frankly. I think next week will be interesting....,,,,,Thanks for your reply. Yes we do have a branch of AGE UK locally and I will ring them on Monday.

      Thanks for your response. No way can I get my father out of his comfort zone - he wont leave his flat at the moment and frankly trying to cope with my husband is more than enough right now. 

      My father has said he does not want to go into a home so so much will depend on if he will co-opeate with the carers, and allow us to instigate carers when the 6 weeks is over and if he can keep on top of eating and taking his tablets.            

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    • Posted

      Well, when the carers find out that he isn't eating ortaking his tablets they will be able to do something, especially if he's aggrressive to the carers.

      Good luck.

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    • Posted

      It could help that your father is in sheltered housing. Again, I suspect it varies according to area, and my experience was 10 years ago, but when my mother was in the local community hospital at the end, the OT told me that her not being in sheltered accommodation would automatically move her to the end of the queue, regardless of her condition. By this time she was completely helpless and clearly needing 24-hour nursing, but they were still obliged to discharge her without a care package. I'd tried for years to get her to move to sheltered accommodation, of which we had a lot in our immediate area, but she'd always refused. The OT, who was personally very sympathetic, said that local thinking was that if you weren't in sheltered housing you couldn't possibly be all that bad! In the event, my mother died two days before her planned discharge day.

      I sympathise totally with the relationship problem too. I'd never got on very well with my mother and dementia never makes anything easier. And yes, we always have to face these problems when we're getting on in years ourselves.

      All I can say is try to take care of yourself and don't give way to guilt over your father. You're doing all you can and you have a responsibility to your husband too.

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    • Posted

      Thanks Lily - much appreciated. The Social Worker is very good and has gone the extra mile.....but at the end of the day now it is out of my hands. So much depends if my father will let the carers in and co-operate because if he starts eating again and takes his tablets properly, he may well be able to stay in his flat for several more years. I realise he needs help with cleaning and shopping and maybe cooking but he does have the finances to do this, and I would imagine Attendance Allowance would be worth applying for. So much depends on how advanced the dementia is. We also think some but not all of it is attention seeking. For example, he knows my time is limited as I have to get home before my husband gets up, yet he just WOULD NOT take his tablets when I went round one morning after Karon had been the day before and noticed they were not being taken. I was literally chasing him round his flat with the tablet packet and in the end just left. Karon too said she sat with him at the table, and he had the tablets in his hands and he had to be told 4 times to take them. I think he is very lonely and he knows that both Karon and I desperately want him to take them before we leave! Carers cannot actually give medication because they are not trained nurses but they can and will promot him. So it will be interesting to see how he reacts to them! Just frankly hope he will let them in or we are back to square one! Yes with an aging population it is going to be something a lot of us will face - just unfortunate my husband is quite ill with kidney problems/lupus/psoriasis and aneamia and my father needs extra help at the same time. I cannot be in two places at once and have told GP and Social Worker I will NOT sleepwalk into being  my father's carer because my mental health is important too. They were actually both very good about it but I had to be quite firm. I just cannot take responsibility for my father's pills and care and gp/hospital appointments as well as my husband. And as a final point, father and husband do not speak to one another having fallen out over 3 years ago!!!!     

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    • Posted

      Well Care Manager visited yesterday for welcome visit and my father had not had his morning pills or the heart pills for am/pm for the day before. He would not take them insistent that Karon had been round that morning and he had taken them.He had not. Care company will pass this back to the GP. Any advice please? Dare not ask if he had eaten. I do not know if this is genuine confusion or a mixture of this and attention seeking. Care Manager to phone me this afternoon to discuss how it is going but they cannot make him take medication and if he will not co-operate will not do the 6 weeks arranged by the social worker.Not sure if they will get in this morning....I think I am going to phone the GP and see if he will do a phone consultation with me and tell me how dangerous it is if my father does not take his anti clotting pills. My father is now insistent that it is the pills that are making him lose his memery but they have taken him off the warafin and are trying him on different ones. I wonder what happens next? GP wanted  me to take him to surgery on Friday when my neighbour visited and said how worried she was, but firstly I do not drive, and although I would have booked a taxi, he just would not co-operate and said he did not want to go. I guess I have to let things get to a level where the GP will come out? I also remain worried about his finances - I know his rent is overdue but he won't help me fill in the direct debit forms which I have got, because he does not seem to know which account his pension goes into.Does anyone know of any organisations which offer financial services to people with dementia? Social worker suggested Age UK Advocacey but they no longer offer this, Thanks for reading      

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    • Posted

      In haste, before leaving for work - do you still have a CAB in your area? I know they closed a lot of offices but there are still some left. I think it's unlikely the Council will evict him anyway if he doesn't pay his rent. Maybe try going to the local rent office and explaining the situation?

      So sorry to hear you're going through all this. And yes, I'm afraid you're right - you will indeed have to let things go into total meltdown before you get any help.

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    • Posted

      Thanks Lily - I did contact CAB by phone and they suggested Age UK and a local centre for transport to and from GP which I progressed. I have got a statement from the Council for him and a Direct Debit form but cannot get him to the next stage. I will wait for the Care Manager to phone me. I will phone his GP tomorrow when I get more information on his heart pills because at the moment he doeas not seem to be taking those tablets or his other ones. He is rather paranoid though ' GP's killing everyone  off over 75' and 'The warafin made me forgetful' and now 'the warafin alternative is ruining my mind.I will at least tell his GP he is not taking his pills and they will have to do a  home visit if it goes on as I cannot drive and I do not think he would co-operate to go in a taxi. Basically it is in the hands of the Social Worker and GP now and i am going to be making it very clear.Sadly my father is getting quite aggressive with me and blaming me for interfering. The lady who does his cleaning and washing is the owner of a small care agency and she may be willing to help sort out his bills - she is totally trustworthy but like me worried abotu setting up standing orders for rent if we do not know which account his pension is going into - he either can't find his statements or won't let me see them. It is like dealing with a spoilt toddler. I think I have to practice 'tough love' and if he gets a letter from the council saying his rent is overdue, he may then co-operate. Not sure what is attention seeking or genuine confusion frankly but no one can dispute the severe weight loss and him insisting he has had his tablets when they are still in the packet. Going to have to disengage from him for a while for my own sanity as I am my husbands carer too.      

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    • Posted

      This is an awful situation for you. People with dementia frequently blame a close relative for 'losing' everything.

      Have you read Contented Dementia by Oliver James?

      Mind you, it sounds like your dad has vascular dementia, not Alzheimer's, so maybe CD isn't the best book. Good luck.        love Tess

       

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    • Posted

      Sorry to hear your dad is becoming aggressive now. Fortunately that didn't happen with my mum, though she became totally uncooperative over everything. My poor friend, who had always been the gentlest, kindest soul, quite suddenly flipped over into psychosis after two years in a lovely home, where she'd been very happy. Pushed the head nurse down the stairs (he wasn't badly hurt), tried to strangle various staff members and me, and finally stabbed another frail resident. The poor lady wasn't badly hurt, but they shipped my friend out of the home after that, and she ended her days in a high-security psychogeriatric unit.

      I know just how hard it can be, but try and remember that when dementia sufferers turn aggressive, it's often because they don't understand what's going on and get frightened and paranoid. They then think they have to defend themselves against everyone around them.

      I agree with your point about trying to figure out how much of your dad's behaviour is down to confusion and how much to deliberate manipulation. This will inevitably happen in close family relationships, and I was strongly aware of it in my mother.

      I think you're just going to have to let things take their course now. I'm afraid that's what I did with my mother in the end. Although she had a call button with a key-safe outside the door, I knew she wouldn't use it. I used to call her several times a day and in the end was making the 200-mile journey to stay with her every week or so, but I knew things would take a turn for the worse sooner or later. This happened when she suddenly developed a urinary infection (she definitely hadn't had it when I left her two days earlier) and had a fall as a result. Fortunately she only broke her wrist, but this was enough to put her in hospital, where she basically gave up and died.

      I know this will sound totally heartless to some people reading it, but it had been going on for nine years, during which time I lost one job after another because of constantly having to drop everything and run home, as well as losing most of my friends. The latter was because my mother would phone constantly throughout the evening, so I couldn't go out. Even when her dementia was well advanced, she was still capable of calling the police if I didn't answer my phone, and telling them she hadn't heard from me for months and was worried. In the early days, when I still occasionally risked evening outings, I found the local police waiting on my doorstep more than once!

      I realise there are some people who are absolute saints and sacrifice their lives completely to look after parents suffering from dementia. My friend in the West Midlands did this, and ended up having a total breakdown. I am lost in admiration of people who can do this, but the rest of us can only do what we can.

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