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.

Our Story.. Knowledge Welcomed?!

Discussion in 'Middle - later stages of dementia' started by Grandaughter90, Nov 3, 2015.

  1. Grandaughter90

    Grandaughter90 Registered User

    Nov 3, 2015
    1
    Sidcup
    Im not really sure where to start, I think im after some knowledge, understanding and advice. Part of me just wants someone to tell my story to without having to sugar coat it. My dads parents are in there late 80’s, they are both very old and frail and I am ashamed to say I haven’t made the best effort to see them often over the years. I work full time and have a 6 year old daughter and in this busy world find it hard. Anyway this isn’t about me its about them…

    My granddad first started showing signs of Alzheimer’s when he would go down stairs to take the bins out but end up at the local shops telling anyone who would listen that he owned a carpet shop (he never owned or even worked in a carpet shop). Hours would go by and my Nan would be worried sick, then he would just come home like only minutes had gone by. My mum saw them the most and insisted he see a doctor. The diagnosis came and so did the many discussions on their safety and happiness. By this time my Nan was so frail she could barely walk and seemed so stressed we insisted on them moving to an assisted living care home.

    The move was stressful for them both and granddad thought they were going on holiday. But within a month I could see a massive change in them both! My nan was taking walks around the gardens.. Yes the lady that could barley shuffle herself to the toilet was now walking around a field!! I couldn’t believe what I was seeing and for the first time in a while I said goodbye without worrying it could be the last time.

    To be honest I had never really witnessed my granddads Alzheimer’s until recently. I must admit it scared me so much and I have been left feeling helpless and confused much like I’m sure he feels. Myself, My DD, my Nan and Grandad were sitting around the coffee table while my DD told us about her day at school. I was watching my grandparents as they listened intently to her stories and laughing, when all of a sudden it was like a switch. My GD’s face expression changed, he stood up and walked to the window, in a strange voice he said “I’m just going to put the car in the garage”.

    Context: My GD always promised me that as soon as I passed my driving test he would give up driving and I would have his car as long as I promised to take my Nan shopping once a week. Sadly I failed a few times then gave up trying when my daughter came along. GD always had a car but when he was diagnosed my parents took his car away as he wasn’t allowed to drive anymore. For a time my dad used it but when I finally passed my test I went to ask my Grand parents if I could have their permission to drive it. With sound mind they signed it over to me and I have now been driving it for just over a year. In the last month nan has asked that I park outside the care home when visiting as to not upset him as his Alzheimer’s has developed.

    So back to the room and my Nan starts to tell him that he has no car and no garage and he cant drive. He looks confused and doesn’t seem to believe her. I told him that the car was at my parents and that he hasn’t had the car for 2 years. He calmed for a minute but then started all over again. This continuous back and fourth went on for around 20 minutes. My nan was getting distressed and upset, I’ve never seen my nan cry but she had tears in her eyes and it broke my heart. She begged me to go and get the duty manager as my GD was now fighting to get out the door. I took him by the hand and told him I needed to go out and that he had to look after my DD. He accepted and sat down. Should I have been worried to leave him with my child in that state I’m not sure..

    I found the DM and she told me how this would be the third time in a week he had flipped out. It was always about his car and the want to go and park it in his garage. She told me how his Alzheimer’s had developed a lot in just weeks and that he now needed full time care. She explained that in order for him to have the care he needed they would have split them up. My Grandparents have been at each others side for 63 years, I’m afraid to split them would be disastrous. All had calmed when I left an hour later but I worry for them.

    Thank you to anyone that has taken the time to read all this, I welcome any advice, ideas or anything that may help. Thank you in advance for your comments

    Charlotte:confused:
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,719
    Female
    London
    Hi Charlotte and welcome to TP.

    I am afraid reasoning with a dementia patient will not help. In their reality they have a car so of course you are talking nonsense. Try agreeing, distracting and telling little love lies. Here's a link to an article about compassionate communication:
    http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

    Your Granddad might have sundowning which means his confusion deepens the later in the day it gets. He needs a lot of reassurance from you guys to feel that everything is going to be ok.

    I cannot answer the question whether he needs full-time care or not as that depends on a lot of factors, and also on how well your Nan is able and willing to look after him. If she is frail herself, she might not be the best person to do that, but if splitting them up would be disastrous, try to get more help into the house - sitters or carers or even a day centre for him to attend.
     
  3. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,955
    Hi Charlotte and welcome to TP.

    Dementia's one of the nastiest diseases there is, I think, but with time and experience sometimes one can learn ways of behaviour that make it slightly less ghastly.

    You mentioned:
    It's usually better to try to switch the attention of someone with dementia to a different topic if possible, arguing logically almost never works. So "let's have a cup of tea first ... shall we have a biscuit with it too?"

    If there's a sudden downturn in life skills that's sometimes an indicator of an infection (a cold, a urinary tract infection or whatever). Very slight health problems seem to knock dementia patients very badly. Your granddad might well get back to nearly his old self (the self of a couple of weeks ago) when he recovers. If a urinary tract infection is suspected get a urine sample done and tested. The GP surgery can normally provide urine sample containers and do the testing for your granddad.

    You're naturally worried your granddad's dementia may result in him having to go into residential care, leaving your Nan behind. Some residential care homes take couples (one with dementia, the other in better health). Even if your granddad has to go into residential care alone, your Nan might well be able to spend most of her time there with him (providing the home is local and easily accessible to your Nan). My Dad spends a lot of every day with Mum in her nursing home. He's still very lonely without her in the evenings but life's not as bad as it might be ... which may be all that one can hope for.
     
  4. Misstep

    Misstep Registered User

    Oct 7, 2015
    57
    South Wales
    Sad situation

    Oh, bless you! I'm sorry that things are at that stage. If you can get them a home together somewhere, that would be good. However, the Alzheimer's will develop and maybe it might be best for your Nan to have some distance in the near future. If you can find something where they can be close but see each other as regularly as your Nan wants, that might be best.
    There are a couple of things it might be worth you thinking about for yourself though:
    1. You cannot be responsible for someone else's happiness.
    2. There is a big difference between what you want in life & what you need.
    Don't forget to live your own life. Most of us dealing with this are rather older than you and it does go with the territory at our stage of life. Your grandparents in their right minds would want you to make the most of your life and enjoy it. Do that for them, even if they seem to want something else now. Ask yourself "Am I doing the best I realistically can, allowing for my over-riding responsibility to my own child (& partner if you've got one)?" If you can answer yes, and I'm very sure you can, let go and understand that you'll have that to hold onto in later years. It's want your Granddad would want.
     

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