Rapid decline

Discussion in 'End of life care' started by ma120990, Jun 1, 2015.

  1. ma120990

    ma120990 Registered User

    Jun 1, 2015
    14
    Southampton
    Hi folks, just felt I wanted to post a message about my father who is entering the last act of his dementia journey. I can hardly believe the transformation in just two months. In march of this year, we was still moderately active for an 82 year old. When I visited him just last month he had the unmistakable dementia shuffle and now this weekend he can barely stand.

    He has been receiving medication for DVT and also some meds to try and help him sleep at night as he has a tendency to wake up after an hour or so and think its time to get up. Sunday morning, for the first time he fell from the edge of the bed to the floor and was also incontinent. Thankfully my mum now has carers coming in three days a week for a couple of hours to give her some respite, but I can't help feel my fathers rapid decline may well be more than just dementia. His brother died two year ago from renal failure and this seems to be a thread that runs through the family so am wondering if the recent rapid decline might also be linked to some kind of renal issues. Living 150 miles away, my visits are every 4 weeks and my sis every other week, but I can't help feel he's now reached the palliative phase and we should do our utmost to make sure he's as comfortable as possible so he can leave this world with as much dignity as possible.
     
  2. theunknown

    theunknown Registered User

    Apr 17, 2015
    321
    Feeling a lot of empathy for you. I had my mum here for Christmas, and couldn't have dreamed that at the beginning of February she'd be sectioned. Thankfully she's out of the hospital, but we had to find an EMI care home very quickly, which we are currently paying a top-up fee for. She went from being my mum to somebody who doesn't know who we are in the space of four months, and who was terrified due to hallucinations.

    Wishing you strength for the future, and I hope the palliative care your dad will receive will be enough to offer a degree of relief to you all.

    Take care.
     
  3. Margee

    Margee Registered User

    Jun 2, 2015
    7
    ma, I'm sorry you are going through this. I just joined the site and wanted to give you a cyber hug. Going through the exact same thing......

    It's so hard. I have to constantly remind myself to go one day at a time and try so hard to enjoy a little bit of life while going through this terrible situation. I hope you do something nice for yourself. It's so important for us to take care of ourselves as we try to do everything in our power to keep our loved ones full of dignity. You sound like a wonderful caring person.

    Hug
     
  4. lucylastic

    lucylastic Registered User

    Jun 2, 2015
    1
    Decline shocking...

    I am brand new to forum when I read your posts.
    My dad was fine on his 90th in January and fairy active.
    Suddenly literally over night in march is started. the decline has been like a whirlwind. he is now in a care home that although badged as alzheimers care, they are struggling because of his height. He is 6ft 4 although frail.
    I just wanted to say I rang the society late Friday and was desperate for advice on what to do for dad. They are BRILLIANT!! I had a specialist dementia nurse out to the home Saturday to review his care and kick off a meeting with all the agencies to discuss the best for dad.
    I am paying 1K a week for inadequate care but it seems common.
     
  5. ma120990

    ma120990 Registered User

    Jun 1, 2015
    14
    Southampton
    Thanks for the comments

    Thanks for the comments, its a surprise just how many people are going through or have gone through such similar events and my best regards to you all. I spoke with mum today and she really feels that dad is ebbing away quite fast. I spoke with sis and she is popping up Thursday to try take them both out for a little trip. Please let the weather be fine for them.

    I still think that there is an underlying renal failure come about and if that's the case we feel that maybe it would be easier to let nature takes its course and keep what dignity remains.
     
  6. ma120990

    ma120990 Registered User

    Jun 1, 2015
    14
    Southampton
    Dad has accepted he's on borrowed time now

    My father has now accepted he's on borrowed time and says he does not want to go on any more. We've decided to try our best to make him comfortable till nature takes its toll. However, what I am surprised about is that there seems little or no advice/guidance from the GP or other helpers that come in. Just seems to be business as usual to them.. very odd! My father in law had two DN's visit him daily when he was dying from cancer. They made sure he was clean and comfortable and monitored his pain without fail.

    I have no idea who or if we should contact about his decision and any care plan wwe could/should make. We've not even heard anything back from the water test they took last Friday or any feeback to see if things had improved or not. I work in the NHS for a Cancer team and we're always checking in with our patients and monitoring how they are. It would appear presently that dementia is the poor relation of illnesses, even though the army of people if affects seems to grow daily.
     
  7. ma120990

    ma120990 Registered User

    Jun 1, 2015
    14
    Southampton
    Yesterday mum had another appalling night with zero sleep. Dad was clapping his hands most of the night and complaining of stomach pain. Mum asked for a doctor to call. When he did attended, he merely gave my mum a new prescription for different water infection tablets, and suggested that my mum consider getting some respite care for herfself (perhaps two weeks). There was little to no mention of any end of life care plan or anything like that which I guess the doctor wanted to avoid as there is nothing in my dads condition to suggest he is palliative. My mum said to the doc that my dad doesn't eat now and had only drank less than a 1/3rd cup of water. The doc didn't seem concerned about this in the slightest.

    If things stay as they are we fully expect death to be just days away (the body cannot go without fluids for more than 5 days) bearing in mind his current fluid intake. We just feel very dissappointed and isolated from the medical fraternity that seem to be shrugging their shoulders or merely playing lip service to what is in essence the end of a life.

    The doc also suggested seeing if we could move his appointment for his next memory clinic foward (presumably at this point we'll be pushing him in through reception on a trolley or in a box...).
     
  8. ma120990

    ma120990 Registered User

    Jun 1, 2015
    14
    Southampton
    Well dad is taking some food now but a miserly amount. His biggest issue is being awake all night. I have just returned from a weekends stay covering nights for mum and these were two of the worst nights i have ever experienced. Mum put dad to bed around 9.30pm and by 9.45 he was up again and sat in the chair. Several wobbly dashes to the bathroom mostly unproductive and a flowing routine of hand rubbing, clapping, whistling and imaginary thread tweezing ensued. For the most part it you do get a brake in the dementia storm it lasts seconds only.

    Noticed a definite slur to the language now but how much of this is due to sheer phsycial exhaustion/weakness or strengthening dementia I cannot say.

    Sunday night mum had two hours peace and then a normal night of dad sat in chair.
    Today he has been driving her nuts with happy clapping (loudly). Trying to appease him with the radio cassette failing miserably. The night care staff may well be having a bad night I think!
     
  9. ma120990

    ma120990 Registered User

    Jun 1, 2015
    14
    Southampton
    Dad is finally at peace. The locum said he did not need to be in hospital for his med, but three days later he was in MAY and a CT scan showed several cancers.

    In the end, we were thankful of the cancer as he suddenly got all the care he deserved. Up to that point he was virtually ignored my the medical profession. All our pleas for help up to that point fell on deaf ears. RIP dad.
     
  10. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,704
    Female
    Dundee
    I'm so sorry to read your news. Sending my condolences.
     
  11. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    9,765
    Merseyside
    I'm so sorry. My thoughts are with you.
     
  12. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    526
    British Isles
    So sorry for the loss of your poor dad. It is so sad that your family's grief will be worsened by the difficulties you encountered trying to get him proper care in his last weeks of life.

    Wishing strength to you all and especially your mum at this sad time. I hope she is able to get some rest.
     

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