New to the site and a long post - sorry

Discussion in 'I care for a person with dementia' started by Sue36, Jul 14, 2019.

  1. Sue36

    Sue36 New member

    Jul 14, 2019

    I am new to the forums. My 83 year old dad was diagnosed with ‘late onset mild Alzheimers’ back in 2017.

    My personal situation is that I am married, have 3 teenage children and officially work 30 hours/week in a highly pressured job which sees me often taking work home or working late although I’m not paid to do that. I have one brother who doesn’t live in the area and who visits on average about once/month but only for 1 day at a time although it is 8 weeks since he has been and that was for a family event. I am very disorganised and my home gets very neglected.

    I haven’t really thought of myself as a carer as such especially as I don’t feel like I do much / enough for dad. I also feel very selfish. Sorry if this ends up being a very long post but below I will try to summarise my experience so far:

    Dad started to show signs of short term memory loss in 2016. At the time my mum was dying of Cancer and most family and friends put it down to stress and grief and thought things would improve. Only myself, my DH and my brother thought it might be something more. At that stage dad agreed to set up lasting Powers of Attorney for Finance and Welfare.

    We got the diagnosis mid 2017. Dad had been referred to a specialist local memory protection service who were great but their involvement ended with the diagnosis and a prescription of Donepezil. We were then placed back in the care of his GP who he has seen only a few times since the diagnosis although for matters not connected to the Alzheimers which they never seem to take into account when they see him despite it being on file. He sees a nurse annually to check weight, bloods and see how he’s getting on. It all feels like lip service as any concerns I raise seem to get bounced back to me.

    He doesn’t have a Social Worker and he has not been assessed again since his diagnosis.

    At the time of the diagnosis dad’s short term memory was bad but he could still hold a conversation about most things, albeit repetitive, he walked to the local shop every morning and bought himself a newspaper, he was assessed as still able to drive, he demonstrated that he could cook for himself, he kept himself and his house clean and he used to walk to his local most Thursdays and Fridays to see his friends although they had to ring him and remind him to go. He didn’t remember if he’d had visitors or phone calls, he sometimes forgot to take his medication (delivered in Nomad packs) and we weren’t convinced that he was eating properly. He seemed to use his car mostly to visit the local chippy which he seemed to do more and more. My brother got annoyed about this and seemed to think that I could do something about it while I was happy that he was, at least, getting himself something substantial to eat most days.

    Now he is still living alone in the old family home, his conversations are very repetitive, he has no short term memory to speak of although still knows people, we didn’t renew his drivers licence when it expired as he ‘lost’ his car a couple of times when at the chippy and thought he would fail an assessment, he stopped going to the local at all and refuses to go even when we offer to take him, his personal hygiene is poor although he insists he has a shower every day (he smells) and he wears the same clothes day after day. A few weeks ago we managed to persuade him to have a shower (very begrudgingly) before a trip out and recovered some very soiled underwear. Having always been clean shaven, he now only shaves when prompted. His house also gets pretty messy by his old, very tidy, standards. He still goes to the shop every morning for his paper and a few bits of food.

    I rang local social services over a year ago and they told me that it was pointless reassessing him as he wasn’t bad enough but if we wanted to arrange extra care privately we could. We’ve tried to discuss this with dad and he is very resistant. The only support we do have now is that we are paying for someone to pop in every day to give him his medication.

    As I stated at the start my involvement is not enough but everyone is looking to me to make sure he is being cared for properly and everyone is quick to tell me what they think:
    • I arrange / take him to doctors/dentists/opticians appointments
    • My DH and I make sure he has enough cash to make him still feel like he has control over his spending on a day to day basis
    • Most Saturdays we get him fish and chips
    • Most Sundays he has Sunday lunch with us
    • If we are having a day out somewhere we will include him
    • My dh does some shopping for him on a Wednesday when I am at a fitness class
    • We try to sort his post out although he gets very possessive and suspicious
    • We try to keep his fridge clear of out of date food
    • We change his bed and wash bedding
    • We try to wash clothes although we have to try to sneak them out
    My uncle helps out a bit in that he visits dad regularly and takes him meals to heat up from time to time.

    I feel like I'm letting dad down and that I am missing out on support as others seem to think he should be getting more. I was wondering what others experiences are?
  2. Ohso

    Ohso Registered User

    Jan 4, 2018
    Im sure others will wade in with great advice but from my experience, if your dad has savings above £23,500 you will be left to either care or provide carers.
    If he has less than this then the only way that carers will be funded is if you step away and his living conditions and health deteriorate to a point where social services cant ignore it, for mum this came, as predicted by everyone l tried to illicit help from, when she neglected herself so much she ended up in hospital. Mums area of neglect was not taking her diabetic medication regurlarly as she 'could do it herself' and resisted help, although l was running around doing all the other things.
    Her stay in hospital was the best thing and started the cascade of intervention and medication changes.
    So based on my experience, step back force ss to put care in place or employ great carers x
    Support....get that here, by the bucket load.
    It sounds like you do masses so dont beat yourself up x
  3. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    #3 Rosettastone57, Jul 14, 2019
    Last edited: Jul 14, 2019
    You're not selfish at all it sounds to me like you're doing an awful lot for your father. However there will probably come a point where his needs are going to be so great that they out way what he wants and the last thing you want is to be put in a position where you have a carers breakdown. I have no experience of social services my mother-in-law was self-funding and we had carers in privately for 3 years.

    There are things on your list that in fact a carer could do rather than you. If your father is going to be self-funding then you can use your power of attorney to organise private care yourself. The carers my mother-in-law had did many of the things you're talking about on the list from washing the bedding ,laundry ,preparing meals prompting medication . You can redirect the post using power of attorney under the Post Offices section of special circumstances . This will keep you in control and reduce your father's suspicions. Personally I wouldn't discuss having carers in or any other support for that matter with your father . The default answer for people with dementia is always going to be no . As far as my mother-in-law was concerned she could do everything herself although the reality was she could do little for herself. Just arrange the support. You need to step back by taking him everywhere you go you are making a rod for your own back. I'm sorry if that sounds a little blunt but my own experiences with my mother-in-law tell me that eventually your father may be clingy and demanding and require your presence all of the time. There's the possibility of day centres for him or even a befriending service to come and sit with him and keep him occupied.

    Of course if SS are going to be funding, they may have different views . You can always ask for a reassessment. All the time you're doing everything, social services won't see the need to help. If your dad didn't have anyone to assist, social services would have to sort it out
  4. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    Everyone is quick to tell you what needs doing and makes you feel you're not doing enough. Well they're wrong - you're doing as much as you can possibly be expected to do. They have no right to put pressure on you.
  5. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I think it sounds like you do a lot for your dad. You do not have to be a "hands on" carer to make sure that he is OK. You do not have to do everything yourself. So long as you can cope with the level of care that you are presently giving, then carry on - just get someone else in to do the rest. its probably time for a new assessment because things have changed considerably.

    Think about what would be helpful to you. Things that you could ask for are:
    A carer to come and help him get showered and dressed in the morning
    Someone to do his laundry, and/or cook a simple meal (usually microwave ready meal), supervise medication
    Day centre, which most people with dementia enjoy, even though they may initially refuse it, which gives mental stimulation and social contact.

    In addition you could hire a cleaner in who would also change bedding (I have someone from Age UK)
    Many charities (like Crossroads) offer befrienders - in my area there is a waiting list, though.

    The biggest problem, of course, is getting your dad to agree. If he doesnt agree then Social Services will not insist, they will just accept what he says. If you are self-funding, of course, you can just go ahead and arrange help yourself.
    I think day care though, needs a referral from the SW - at least it does in my area.

    By the way - ignore "helpful" relatives who are quick to tell you what to do and slow to offer any actual help. If they are persistant, try saying "Oh what a good idea - when can you come and do it?" You wont hear anything for a while!

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