Any advice - helping dad understand he needs more care than I can give

Discussion in 'I care for a person with dementia' started by fmccdancer, Apr 26, 2015.

  1. fmccdancer

    fmccdancer Registered User

    Mar 28, 2012
    4
    Rochdale
    Sorry - I think this is going to be a long post.

    My dad had a diagnosis of mixed dementia several years ago. At a review meeting last year the memory clinic queried the diagnosis as he wasn't showing the 'usual' progression. He was referred for another MR scan (the first time he couldn't have the scan as he couldn't lie flat enough). We had one abortive trip to Leeds, followed by a slightly more successful trip to a clinic in London at the end of January. Dad's GP - who is brilliant - referred the report to the memory clinic for review and a follow-up appointment, but the memory clinic has a six month backlog so we're looking at July at the earliest before we find out any more. In the meantime, I'm left not knowing if we're dealing with dementia or ... what? But what we do know is that my dad has significant memory issues, with his short term memory being practically non-existent at times (increasingly so). And I guess that also means I'm not sure if posting on here is even relevant?

    Dad has been coping in his own home - but needing increasing amounts of support. He had to stop driving about two years ago (still haven't heard the end of that from him) which meant that his social interaction was curtailed - although in effect what he'd been doing is driving himself to the local lake to sit and people watch. He was initially (3-4 years ago) having carers in three times a week to deal with his leg ulcers and change his compression socks. This was increased to daily visits about 18 months ago, and was to include a couple of visits to help him shower. He has refused any more help from "strangers". I've been taking him food shopping since he stopped driving, and increasingly doing his shopping for him. I've been doing all his washing for I don't know how long. We now pay his carer to do basic cleaning once a week. I deal with all dad's paperwork. Since he stopped driving, I've been taking him out for lunch on a Sunday - and over the last 18 months this has turned into lunch and shopping on a Saturday as well. To the extent that, unless I have an appointment which dad recognises as 'unavoidable' (eg hairdressers) he rings me up several times during the day on a Saturday if I don't turn up at lunchtime - irrespective of what we've discussed the previous night (he doesn't of course remember). I feel like I no longer have my own time. I go away some weekends - which feels wonderful. Dad rarely calls then, but otherwise insists that he can't cope if I'm away overnight. And often rings me up during the night just before I go away, or the night I get back. Since mum died in 2006 he's been ringing me up every night about 10.30pm to make sure I'm ok before he goes to bed. That has also served as a double-check for his medication, since he went on warfarin. But sometimes he forgets he's called. And, to be honest, the constant phone calls are driving me nuts.

    In the last few months the phone calls have been increasing - during the day, late at night and for the last two or three months increasingly in the middle of the night. I work full time, spending at least three hours a day commuting.

    Dad was in hospital with a UTI in February. We had trouble persuading him to stay in the hospital - he was extra confused because of the infection - and he was only in there two nights. When he came home he was refusing the extra care visits which were put in place to make sure he was applying ointment and was keeping clean - and he was so abusive to the carers one night that they complained. That coincided with half term when my brother was on holiday and he stepped in to deal with as much as he could. My dad and brother have, shall we say, a stormy relationship so it's been easier for me to have the interactions with my dad. But since half term my brother has been much more involved and has really stepped up this last couple of weeks.

    Since the hospital stay, dad's GP has been increasingly concerned. That was followed by a bout with this very bad cold that has been going the rounds, and has settled on people's chests and lingered. Dad became convinced he had cheese stuck in his throat and wouldn't be persuaded otherwise. When I refused to take him to A&E he called his next door neighbour who - knowing no better - sat up at the hospital with him for a few hours and then called me when they got in at 1.30am to tell me what had happened. Dad has been calling at all hours because he's frightened he's going to stop breathing and wants one of us to go down and stay the night "just for tonight", but this has been going on for weeks. His hygiene is suffering. He doesn't want a shower, refuses to change the incontinence pads he's been wearing since the UTI and I don't think is eating as much - apart from when one of us takes him out for lunch. His carer is scheduled to take him out twice a week as well - to get dad out and about and to make me feel less guilty if I can't take him out at a weekend. It turns out that he's been sleeping in his chair downstairs some of the time - which has meant that his legs have swollen so much that his leg ulcers have broken out again.

    We've been discussing care homes. Dad has always (ie I remember from being a young child) that he would never go into a home. He has seemed, recently, to be accepting that he may need to, especially as he won't be able to manage the stairs for much longer (he has osteoporosis in one hip). But the occasional rational discussions don't last long - he forgets we've discussed it, he becomes agitated, angry, and we're back to square one.

    All this has been taking an increasing toll on me. I feel like I'm going mad. On one level, staying down at my dad's overnight, talking to him, doing things for him sounds perfectly reasonable - but I know that I'm dreading the 'phone going, I'm panicking at the thought of it, I'm exhausted, I'm in tears for no apparent reason, work is suffering.

    We finally got dad to agree, albeit reluctantly, to go into respite care last Wednesday to give me, and my brother, a break. This was after a week of multiple phone calls from my dad, my brother, carers, dad's GP ... and me leaving work early every day for a week to take my dad to an appointment or deal with some "emergency". In the middle of all this was my uncle's funeral (which we didn't tell dad about - he couldn't have travelled). Dad seemed to recognise that I was at the end of my tether, which is why he finally agreed to go in. But we'd only been in the care home a few minutes when he started saying he didn't like it and wasn't staying. My brother left after an hour as his presence was just winding up my dad more. He first went to get dad some tea (he hadn't eaten and had missed the evening meal), which I managed to get dad to eat. But each time I tried to leave he got more and more agitated and was trying to follow me We eventually persuaded him that he needed to stay for at least one night so that I wasn't worried about him. I left in tears. Someone from the care home called later that evening to tell me he'd calmed down, was a changed person, and was looking forward to his full English! So I could relax.

    But he got increasingly agitated on and off over the next few days. His GP has been involved, as has the urgent care team. They've assessed his mental capacity, with a view to getting a DOLS - but he's assessed as having capacity and understanding the risks of going home. Our minister spent two hours with him yesterday. My brother has been bearing the brunt of this particular episode as I'm at the end of my tether. We both work full time, and I've having problems at work now which are in danger of pushing me over the edge. I'm likely to be signed off sick next week. In some ways that would have been a relief as - with dad in respite care - I might have been able to get some rest. But it all culminated in dad going home last night - they could no longer keep him there against his will. I've seen dad kick off a lot over the years (not just post-dementia) and I know how hard it is to cope with. The urgent care person assessed him on his stairs, and he was ok - so had to leave him at home. My brother spoke to dad last night. Dad started ringing me before eight this morning saying how bad he's feeling. I'm ashamed to say I haven't been down. I know I'll have to at some point - but I'm at screaming point. How can he say he doesn't need help, when he's on the 'phone all the time saying how bad he feels and he can't be on his own? I know he's not reasoning properly ... but we don't know where to turn next.

    Has anyone been at this point? Anything to suggest?

    Thank you if you've managed to get to the end of this 'war and peace' like post.

    Diane.
     
  2. canary

    canary Registered User

    Feb 25, 2014
    10,801
    Female
    South coast
    Oh I remember this stage - when they can no longer cope by themself but dont have the insight to realise that they need help and are still assessed as having capacity :(
    Mum refused carers too, wasnt washing or eating and I was pulling my hair out. In the end Mum had a TIA and ended up in hospital and she went into a care home from there.

    Im sorry I dont have any answers, but Im glad your GP is sympathetic to you. Sending huge amounts of sympathy here too.
     
  3. fmccdancer

    fmccdancer Registered User

    Mar 28, 2012
    4
    Rochdale
    Thank you

    Thank you :)

    The carers from the care home are visiting dad today. We're hoping to get a new care package in place tomorrow.

    Dad's GP is caring, communicative and supportive. I'm hoping to see my GP (different practice) tomorrow. I haven't been near my GP in over a year ... I need to start looking after me better too :)

    Feel better just having shared everything where hopefully it's understood. I know there are no easy answers.
     
  4. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    #4 RedLou, Apr 26, 2015
    Last edited: Apr 26, 2015
    Diane - in my experience someone with dementia - and your dad sounds as if he has dementia to me - is utterly incapable of realising how incapable they really are. They also fail to see the burden they are imposing on the prime care giver. It all becomes me, me, me, like a spoilt toddler. When my father was also at home and being stubborn, I was advised by dementia specialists where I live that I would just have to accept the situation would reach crisis point and when it did the decisions would be taken out of his hands. This is, indeed, what happened. I was also advised not to run myself ragged making his illusory 'independence' continue (particularly difficult for me as my father lives abroad) and not to feel guilty. This advice came to me from all quarters - my family, specialists, my spiritual adviser (priest). I still have difficulty taking it on board but even partially taking it on board has helped me. You are not responsible for your father's unhappiness. Dementia is.
    --& as a ps, in my experience, there is almost nothing you can do to restore his happiness. However, there are carers on here who report their loved-ones being happier once in a care home environment, for example.
     
  5. fmccdancer

    fmccdancer Registered User

    Mar 28, 2012
    4
    Rochdale
    Thanks

    Thank you. I believe he will be better off in a care home. He will have people there for the times when he's worried, and when there really is something wrong, and hopefully will also have more companionship. It's just getting him there. What I know and what I feel are not always the same thing, I guess. I do know I need to give myself a break :) Hearing the advice from people who have been there helps. Friends are supportive, but not everyone has a real appreciation of what it's like.
     
  6. Blackfield

    Blackfield Registered User

    Mar 8, 2015
    21
    We placed dad in a care home 10 days ago as we just could not cope with him any more. It's the hardest thing I have ever had to because he still has moments of being perfectly OK to handle but most of the time it was hell. The staff are amazing but he is on medication to calm him down so it is easier for them to keep him there I guess. He would never stay there willingly though. The relief to actually go back to a normal life is indescribable. I feel no guilt as we are all so exhausted, that will come later no doubt.

    Keep pushing for dad to be mentally incapable of being able to make his own decisions. Unfortunately that will probably mean you will have to stop caring for him so well and pulling the phone out for a few hours a day. Sounds to me as though you are on the edge yourself so you have a tough time in front of you but once you get him into the care home you will eventually get your own life back.
     
  7. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    I hope not. If it does, remember how spent you were.
     
  8. Liz57

    Liz57 Registered User

    Dec 22, 2013
    184
    Diane, in reading your post, it could have come from me although I haven't yet managed the respite care. My mum is clearly at a similar stage and apart from brief moments of near clarity, is unaware of her needs at all. she is no longer capable of making any kind of meal other than toast (with chutney the other day - she no longer recognises jam) and her phone calls are just so frequent, even my dogs cower when the phone rings (I left her at 7.10 and she's now phoned 8 times in the last 35 minutes to tell me she's home and to enquire how I am as she claims she hasn't seen me all day).

    Social services say she's not that bad as she is capable of getting herself up and dressed albeit that she rarely washes (and never showers), forgets to change her clothes and believes she lives with her mum and dad who she keeps "losing" and therefore phones me to find out where they are - her mother passed away 43 years ago and her father over 50 years ago. She believes I'm her sister (not flattering as her sister would have been 94 this year if she hadn't passed away 17 years ago). They've admitted, however, that I should have been supported over the last two years and mum should have had proper check ups and referrals to other professsionals which she simply hasn't had.

    Personally, I don't know what a crisis is and I'm hoping I'll recognise it when I get there but it certainly feels if I've been there, bought the t-shirt and had several repeat performances. This probably isn't helping but I can absolutely support the "take the phone off the hook" advice. It's the only thing that has stopped me throwing myself in front of a bus recently. I've been advised by those on here to shout for help and shout loud. I'm now doing that and slowly but surely getting some sort of help. You must do the same.
     
  9. janey106

    janey106 Registered User

    Dec 10, 2013
    139
    Diane, your long post could have been written by me also. In fact, I did write a long post trying to capture just the demands and madness of last 72 hours but deleted it all twice so I was relieved to see yours spoke for me and no doubt countless others ...Thank you.

    I wish I had answers but like others just now feel we have to wait for that 'turning-point crisis'. So hard to pull back and to let it happen especially as I fear my Mums increasing anger, aggression makes her a very real threat to my 81 yr old Dad.

    Thinking of you, so sorry I can't offer more than this as comfort.
    Janey
     
  10. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    Diane,
    Are you sure we don't have the same Dad? Seriously though, your Dad sounds exactly the same as my Dad, who has mixed dementia. My Dad is unresponsive, rather than assertive like yours (he always was hands off even when he was well) so he never rings and always says he is well when he isn't (same as before dementia). I am also pretty sure he would fail a capacity assessment.
    I felt very emotional reading your post as the feelings you are expressing in it really chime with how I am feeling. It's awful, isn't it? At the end of the day it doesn't matter what he's diagnosed with, Alzheimers, mixed dementia, vascular dementia, Lewy Body, or whatever else, he has cognitive impairment which is significant and which means he cannot take care of himself.
    I've been advised by all these great TP'ers here to shout loud too, to push for Dad to be determined as incapable and however heartbreaking that is, it is something that you must do for the sake of your own health. As a result of stress I have been diagnosed with anxiety (panic attacks), insomnia, irregular heartbeat, acid reflux indigestion and a never ending occurrence of colds, infections and the like. I have really damaged myself and my GP, who is great, has said to me 'enough'.
    I wish you all the best and sending you a hug:)
    Jane xx
     
  11. fmccdancer

    fmccdancer Registered User

    Mar 28, 2012
    4
    Rochdale
    Thank you to everyone who has responded. Although I hate to think of others being in the same position, it is of some comfort. I've just been signed off sick for a fortnight (mainly the stress with dad, but there are contributing factors at work unfortunately). It's such a difficult situation.
    And I'm returning all the hugs, etc in kind!
     

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