Hi Iam new to this site and feel lonely and isolated

Discussion in 'Younger people with dementia and their carers' started by Beannie, Aug 22, 2015.

  1. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    Hi,
    I have been posting on the I have a partner with dementia and having visited the Forum again realise this one is probably better for me. My husband D was diagnosed with Parkinsons Disease in November 2010 and Alzheimers disease in February 2011 aged 57. D was and still is totally unable to accept this and thought if he took the medication he was prescribed it would all go away. He had to stop work 2 years ago when we still had a mortgage to pay and I continued to work part time, until this Christmas when we used some savings to pay the mortgage off and I retired as I realised D's health was on the decline. Over the years because of various factors and D's long shift based working hours we became friends and I now find I cannot deal with his personal care.

    About 7/8 weeks ago his health deteriorated to the point where I was coming home after going out to find him on the floor where he had fallen. On occasions I had to call for ambulance assistance. He also became unable to wash, shower and dress himself properly and his speech went into a sudden decline and he has now been diagnosed with dysarthria and asphasia which is why his speech is changing. On the last weekend he was at home he urinated on the bathroom floor 10 times and I couldn't take anymore.

    4 weeks ago his health deteriorated so much I had to beg for partially funded Local Council Authority respite. This has now finished and D wants to stay there as we have steep stairs and his cognitive skills mean I would have to stay in 24/7. This I cannot do as I have an elderly 92 year old mother to help as well. I also have arthritis in many of my joints and a AF of the heart. Thanks for taking the time to read this.
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,586
    Female
    Dundee
    Good morning.

    I'm so sorry to read of your situation. How terribly sad for you both. I do hope that arrangements can be made for D to stay where he is. It does sound like the best solution for you both.
     
  3. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,280
    Female
    near Folkestone
    Hello from me too, so sorry you are facing such difficulties. Like izzy, I hope he will be able to stay where he is and you find the help to be able to do this xx


    Sent from my iPhone using Talking Point
     
  4. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,654
    North West
    I agree with Izzy and Chick. The clincher for me would be that he actually wants to stay there. I would think that is a great help to you in making a decision. So often carers feel enormous guilt in this situation because the person with dementia does not want to go.

    I can empathise about the problem of the double diagnosis as my wife's longstanding AD has been compounded since, about a year ago, she started having PD symptoms and, at the moment, these are probably causing more practical problems than the AD though sometimes it is difficult to be sure which disease is responsible for a particular symptom.

    You've certainly chosen the right forum if the other one you are referring to is the one I tried, if only because TP is so busy and has such a vast active membership ready to respond.
     
  5. Joco

    Joco Registered User

    Feb 24, 2012
    23
    Hi Beannie,
    So sorry to hear about your situation, it really is heartbreaking for you but like others have said, take comfort from the fact he wants to stay there. Hopefully that will ease some guilt over what is an awful decision.

    I read your other post too, some similarities with my family's situation; my dad is 62, diagnosed at 57 with Alzheimer's and vascular dementia. Mum is somehow still managing to care for him at home with respite every 4 weeks but it is so very hard and taking its toll on her too. I suppose I just wanted to let you know that you're not alone even though it probably feels like a very lonely place.

    (((Hugs)))
     
  6. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    Thanks for the re-assuring reply

    Hi Stanleypj

    Thanks very much for your reply to my posts. It is very re-assuring to know that other people read and are interested in what you have to say. I agree the PD does cause the more practical problems and the AD just compounds it. There just seems to be so few others with the double diagnosis. Is your wife still living at home? This is where the guilt monster kicks in with me when I see so many others struggling valiantly on at home and I just wonder if I am a horrible uncaring person (which deep down I know I am not) TP has been like a lifeline in a troubled ocean to me and I log in everyday at some point. So thanks for being a listening ear.
     
  7. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,206
    Merseyside
    Beanie you are not uncaring. Everyone deals with things their own way & has their limits.
     
  8. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,654
    North West
    Beanie, thanks for your response.

    I have cared for and am caring for Sue at home and I plan to continue. I am being greatly helped by recent award of CHC funding. But no realistic person should say 'never' about residential care as no-one can predict the future and how their situation may change.

    PLEASE DO NOT FEEL GUILTY. No-one who knows anything about these diseases would judge you. And no-one else has a right to judge you.
     
  9. kathleenr

    kathleenr Registered User

    Aug 19, 2013
    33
    make sure you take care of yourself

    reading this it feels like too much for anyone person to cope with. I am simply caring for a 58 year old with front temporal dementia and a depressed teenager. Although it would be wonderful to have like exactly as your cared for would like, you need to get out and about and to be well, otherwise everything will fall apart.
    Take care of yourself x
     

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