1. Stresshead

    Stresshead Registered User

    Sep 13, 2014
    96
    Hi

    I wonder if you can help ? I know I've read before about it being difficult to allocate a stage to a person but I can't help but wonder where my dad is at. I just wondered if any of you had any idea?

    He is 84 and was diagnosed 18 months ago but looking back had signs of it for a couple of years before that. He lives with me and attends a day centre for 4 hours every day. They tell me that he is now eating very little whilst he is there and has to be encouraged to eat as otherwise he will just leave the food on his plate and fold his arms. It is the same at home and will no longer eat a main meal and seems to be surviving on half a sandwich and anything sweet (I've seen the other thread about sweet things). As such he has lost nearly 2 stone since Christmas.

    He has become very quiet and struggles to understand what you are saying to him so it has to be repeated 2 or 3 times and responses are generally just one or two words. His short term memory has completely gone and long term isn't much better.

    Every day from about 2pm onwards he becomes obsessed with the time. We have had to hide his watch for our own sanity as it was like living with the talking clock as he would announce the time every minute or so. Now he just continuously asks us the time and that will be followed by wanting to go to bed. When I ask if he is tired he says no, he just wants to go to bed. It is a daily struggle to get him to stay up beyond 4pm. This has been going on for about a month now and so far he is sleeping through the night (quickly touching wood) but I am waiting for the time when he starts getting up in the middle of the night again to start his day.

    Chest infections have been a massive problem this year with one after another and 4 stays in hospital with pneumonia. Whenever he comes off of any antibiotics he can only go for about 4 days before symptoms start again and we all know what it's like when a person with Alzheimers gets an infection. He has already become immune to one set of antibiotics and am worried he will be become resistant to the current ones.

    This year has seen the biggest deterioration in his general health and like everybody on here I am always trying to second guess what is going on and take action to prevent things from getting worse. However that is practically impossible to do.

    I think he starting to move from middle to late stages but I would be interested to hear what you think.

    Wishing love and strength to you all.

    Stresshead xx
     
  2. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,968
    Suffolk
    I would have thought late stages already. But do understand that progress through dementia isn't a linear thing. For instance, many on here complain that they get phoned many, many times a day. With OH, the ability to use a phone - and any other electronic device- was one of the first things to be lost.
    Perhaps he's feeling that he doesn't want to be around any more? I'm assuming you have POAs in place? And all allowances in place? Have you talked to gp about DNR? Also other treatment, like iv antibiotics. My OH had ABs for first supposed chest infection. The second was not treated and he died a few days later. To be honest, although it wasn't my decision, his life was not a life any more and he didn't like it. He also lost over 10 kg in the last 3months.
    Many in his situation decide that they don't want food any more and sleep for increasing long periods. This is very common near end stages.
     
  3. Stresshead

    Stresshead Registered User

    Sep 13, 2014
    96
    Thank you for your reply Spamar. I think I know in my heart of hearts what the answer is but I guess I just wanted to sound it off with people who understand the disease.

    As I've said in previous posts, there is only my dad and me (no brothers or sisters and mum passed when I was young). I love him with all my heart. We have always been close and he has always been my best friend. Watching this happen to him is ripping me apart.

    I know from reading other peoples posts that our journey with Alzheimers has been easier than some as dad is a very gentle man and very compliant and so far hasn't changed in that respect.

    In some ways he is ok (with lots of support) as the day centres he attends aren't specialist ones for people with dementia just ones for elderly people. The people who run them are lovely and keep an eye on him. He doesn't wander and is never aggressive but is slowly but surely becoming quieter, weaker and less able.

    I just want to make it all better but I can't and to try and anticipate what is coming so I can plan but without a crystal ball it's impossible. I think I am just scared and trying to work out what is happening.

    I hate this bloody disease !!
     
  4. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,968
    Suffolk
    Don't we all! OH was relatively easy, but I still have nightmares about some of the worst bits. He only died 3 weeks ago, not got used to it yet, as you will see from some of my other posts!
    I am convinced that he was fed up with his life and expressed his wishes the only way possible - not eating much. He did this about 5 years ago, but decided to eat in the end. This time, not, but he was that much older and further along the dementia journey.
     
  5. Stresshead

    Stresshead Registered User

    Sep 13, 2014
    96
    Oh Spamar I am so sorry, I had no idea of your recent loss. This must all just be so raw for you and how kind it is that you can still take time to reach out to other people.

    You have my condolences and I hope that you get some peace from knowing that your husband is now at rest.

    Xx


    Sent from my iPhone using Talking Point
     
  6. Louby65

    Louby65 Registered User

    Mar 26, 2014
    620
    Scotland
    Hi stress head . There are a few scales that professionals use to determine what level a person with dementia is at . Please remember , that there is also individuality within people with dementia .
    The most common scales are
    Global Deterioration Scale for Assessment of Primary Degenerative Dementia (GDS) (also known as the Reisberg Scale),

    Functional Assessment Staging (FAST): a seven stage system based on level of functioning and daily activities.

    The Clinical Dementia Rating (CDR) scale: a five-stage system based on cognitive (thinking) abilities and the individual's ability to function. Commonly used in dementia research.
    Hope some of this helps but please don't get too upset reading the stages, as I said earlier , people don't always 'fit' into a category
    Best wishes
    Lou
     

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