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. indigo_87

    indigo_87 Registered User

    May 2, 2015
    5
    My father (68) was diagnosed with having vascular dementia after suffering a stroke (we presume in his sleep, or when my mother was at work) early last year, and for about 12 months things were manageable. Work days reduced, conversation minimalised, day trips shorter and easier, limititations narrowed. However early this year my dad had a nasty fall at home, resulting in a month in hospital. Tests proved inconclusive but the evidence was clear in his behaviour, memory and physicality- he had declined at an alarming rate, and it was heart breaking to see him in the hospital bed; all at once confused, vacant and agitated. There was a day or two when the doctor told my mum that his time may be ending fast. I was incredibly sad and tearful all the time, but I felt ready, the person that my Dad had become was not the man I once knew as my father; independent, introverted, intelligent, irritable, and with a great sense of humour. Despite everything I felt ready.

    But my Dad got better, was discharged and sent back home. My mother has become a full time carer and despite some hours of respite from social services. She now seems to exist purely to look after him. He cannot walk or use the bathroom unaided, and simple tasks (holding a cup without spilling a drink, eating without a knife and fork) prove to be difficult. Someone needs to sit with him constantly in case he gets up and falls over. And what breaks my heart is that he wants to go out by himself still. My mum is resourceful and strong, but I worry for her constantly. She is an only child (my dads brothers and sisters are both dead) and we have many extended family who exist only on the periphery- to make small talk with at weddings and funerals and to exchange Yuletide greetings in Christmas cards. No one in short, to help my mother with the burden. She's still very young to be going through all this.

    When I think about the future of my parents all I feel is depressed, helpless and scared. Scared about what will happen to him, worried for my mothers isolation, and worried about how long this will go on for. I love my Dad, but I don't want a care home to be his future (which I can't help might be the case one day- he's too heavy for my Mum to lift without help.) I want my Dad to die with some scrap of dignity left. And I don't even feel guilty for thinking that.
     
  2. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    Welcome indigo.
    Oh Indigo my heart goes out to you, so young, yes I too have looked and went I know the future and it scares me. I have to be strong you have to be strong even if it hurts like mad. You have found TP that is the start there are people here who are so much further down the line than you or I but they will guide us. Looking out for you
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,853
    Female
    Scotland
    Indigo we share your concerns for the future of so many people with dementia and other health issues and for those who care for them. I had never experienced dementia in my life until my husband developed it over a longish period with me putting it down to natural ageing, poor hearing etc. Once the awful truth kicks in and deterioration begins in earnest then frightening is the word.

    What to do? Your Mum sounds as if she is stuck at home. Could she get to any of the Alzheimer's Soc groups? I would have been lost without them over the last two years. Singing, film shows, bowling, football groups - different groups in different areas.

    Gradually I have got to know staff and other carers and their company and the laughs we have mean a lot to me. The other advantage is that when husband started at a day centre he was used to that kind of company and went off quite the thing. I hope that if he needs a care home the same will be true.

    Others will be along with advice so good wishes Indigo.
     
  4. indigo_87

    indigo_87 Registered User

    May 2, 2015
    5
    Thanks for the replies, my mum has help and support from social services, she gets a certain amount of respite hours per week, and is hoping to get back to work 2 days a week soon. I'm looking forward to her going back to work (partly for her own sanity- her job means a lot to her) but I know she's anxious about how he will be without her for more than a few hours. She can always talk to me, we're close but I'm aware of her slipping into 'mum mode' sometimes. It took her awhile to tell he about his diagnosis as she didn't want to upset me (I can understand why it took her a while but I was still angry with her.) I know in my heart there is nothing I can do but be there for her, I don't live at home and I try to see them at least once a week, if not more. It just still doesn't feel like I'm doing enough to help.
     

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