End of Life when two have dementia

Discussion in 'End of life care' started by normski, Mar 30, 2015.

  1. normski

    normski Registered User

    Oct 20, 2013
    3
    Hello,
    Whilst having been a member for some time I haven't posted before. I am an only child (but do have supportive family and partner) and both parents have dementia Dad has vascular dementia and is near end of life and Mother has Alzheimer’s. I have made a conscious choice based on their wishes and comfort to keep both of them at home. I employ two people to supplement the personal care from the local authority and have the right equipment in place and support from Psychiatrist and CPN.

    Whilst my Dad has been taken off most of his meds except those that keep him calm The biggest problem I have is that my poor Mum does not remember he is ill and thinks he is being lazy and tries to pull him out of bed, (she cant because of the safety bars) shouts at him or tells him off for being "lazy". This obviously is upsetting for him ...although he is often asleep, for carers and me.

    I take her up with me to sit with him and explain he may not have long and we should spend some with him. She is OK but then forgets ... over the last couple of days she has been more aggressive and less caring towards him. I had wondered whether in her eyes, all the attention is for him ...Jealousy? or the fact he was quite aggressive and violent as his disease progressed and that she basically has no time for him anymore...dying or not. Just wondered if anyone had encountered similar and any tips or strategies that could help him in his last days. They have been 55 years married and I had to buy a hospital bed and ask her to move to the spare room and she is a bit resentful about that too as we have home hospital etc.
     
  2. normski

    normski Registered User

    Oct 20, 2013
    3
    What i really wanted to know is how have others gotton round this, when i remind her to be kind she is upset, and would like him to know that she is there and that she is gentle>
     
  3. #3 DazeInOurLives, Mar 30, 2015
    Last edited: Mar 30, 2015
    Three years ago this week, my Dad died at home with alzheimer's and vascular dementia. Mum was also at home but already many years into her own alzheimer's disease. It was a really tough one after over 52 years of a very loving marriage, the last 5 of which had seen them both mentally deteriorating and increasingly unable to accommodate each others' needs. My Dad was my Mum's rock and comfort and seeing him unable to fulfil that role escalated her anxiety and fear to very disabling levels. Very difficult times.

    All I can recommend is that your Mum is given as much attention as possible. My Mum was also very jealous as well as upset when reminded of the situation. Perhaps her sitting with him for long is not so helpful for her. What if she were to sit with him but be given a simple hand massage, so she felt that she was being looked after too? My Mum behaved rather like a child with jealousy (which was out of character for her and all to do with her own illness), and we needed to do everything possible to ensure she felt as important as Dad when he was receiving attention.

    You could say to your Dad in your Mum's presence, "XX is here, try not to worry about her; we are loving her and looking after her too." Given their conditions, you can repeat this as often as you need to, or something equally comforting to them both which, crucially, acknowledges both their needs and importance.

    Also - is there any way that she can have her own bedroom back and your Dad's hospital bed placed elsewhere in the house? The disruption to your Mum and their bedroom may well be very distressing for her. My Mum craved normality above all else, so we put Dad's bed in the room she used least often, which reduced the changes for Mum.

    Perhaps your Dad will be eligible for End Of Life NHS care, which might free up some of the other care you already have to support your Mum. The GP could refer to the district nursing service for End of Life care - he may be eligible for CHC funding which is much easier to get at the end of life than earlier in the process.

    Another possible resource for your Mum might be Crossroads (google it for your area) - they can provide short term free respite at home which is another source of care and attention for her, so you can spend a bit more time with your Dad if you'd like to.

    Good luck...it's very tough to have both ill together and you'll need to draw in all offers of help from outside to keep you on top of it whilst being pulled in so many directions. Don't be afraid to ask for help directly if the offers are not there or not hitting the mark. You need this bit to go right for you all and when time is so limited all stops need to be pulled out to enable that.

    Private message me if you need to.

    With warmest wishes,

    Daze
     
  4. snowygirl

    snowygirl Registered User

    Jan 9, 2014
    151
    Hi Normski

    I haven't really got any advice to you but as I too have both parents struggling with this awful disease at home I just wanted to let you know that there are others out there who can identify with you. I feel like I'm only at the start of what is going to be a horrible journey but already my heart is so sad at seeing two people who have been together for 53 years struggling to comprehend what his happening to each other. I hope more people can come along and offer advice to help you and your parents.
     

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