1. Andrea

    Andrea Registered User

    Sep 3, 2003
    8
    Isle of Wight
    Mr mum was diagnosed with Alzheimers around 6 yrs ago. She is still at home with my Dad, they are both 68 now. He has 2 weeks respite care and has her at home for 4 weeks in between. She has gradually become less and less mentally active, she is now incontinent, hasn`t spoken for around 18 months, understands nothing and reckonises no-one. Up until very recently, (the last month or so) has eaten and drunk fairly well, although needs feeding. The last time she went away for respite she showed signs of having a flu type bug - high temperature, cough etc. She then stopped eating solids. Because she was poorly her stay was extended as she wasn`t well enough to come home. Anyway. now at home she is still refusing to eat solids. My dad does manage to get meal replacement drinks down her but drinking these makes her cough and quite often she bring it back up or spits it out. I know that in the later stages the ability to swallow is lost but is it normal for it to happen so suddenly? My dad has reached the point that he can longer cope and feels it would be best if she were taken into a home on a permanent basis. She is now so week that she has trouble with mobility. He can`t hold her up and wash her down etc etc. During the last respite she lost a stone in weight in just over two weeks!!
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Andrea

    sorry to hear things have got worse. They do tend to happen quite suddenly, especially if there is any element of vascular dementia which often happens. But anyway, there is a point when that last useful brain cell for a particular activity gets knocked out, and something is lost. That appears to be quite sudden.

    But sudden changes also happen with changes of location, etc. People with dementia respond poorly to different locations and regimes. Sometimes things can return.

    I know Jan's home are very positive that they keep giving solid food as long as possible, since once they start to liquidise meals, the stomach unlearns the ability to digest very quickly and it is difficult to go back to solids.

    Medication can also affect just about everything so it would we useful to know whether there has been any change in that.

    Sounds to me that, if there is no obvious reason and solution, it would be good at least to consider looking at possible care homes, if only for Dad's sake.
     
  3. Andrea

    Andrea Registered User

    Sep 3, 2003
    8
    Isle of Wight
    Thanks Bruce, Yes they have changed her medication. She was taking respridrill (or something similar sounding that I can`t spell!!) a sedative. Apparently this increases the chance of strokes. Tney changed it to something else - don`t know what. This seemed to be the catalyst for the flue like bug - they think it was a build up of the new drug. She was on no medication at all until she returned home but was unsettled so I think dad has been giving it to her at night in the hope that they get some sleep.
     
  4. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    Have you read the Alzheimer's Society factsheet on eating? Is your mum's problem with swallowing, chewing or not knowing that she's hungry? A speech therapist told us that sometimes AD patients don't really realize when they have food in their mouths - especially when it's just warm slush. Cold things - like ice-cream - and hot things - like soup - or things with a texture or a strong taste, can remind them to swallow. I think the hardest thing of all in the hot weather is getting them to drink a lot. It seems like a full-time job, doesn't it, when it takes an hour to get a glass of juice down in little sips?
    I don't think eating matters as much as drinking, at this time of year. We measured out what two litres would be, in terms of our usual glasses or mugs, and that was quite a shock! But it gave us a target to aim for!
    Good luck.
     
  5. Andrea

    Andrea Registered User

    Sep 3, 2003
    8
    Isle of Wight
    Thanks for the comments. It was respridone that she was on. The CPN went and saw them today and they have taken her back to the respite unit that she goes to and they are going to cease with the new drugs and put her back on respiridone. All the problems she`s encountered over the last 3 weeks or so seem to stem back to when they changed her medication. Hopefully she will settle down enough that dad can once again cope at home although I am doubtful after Bruce`s comments tht she will regain the ability to eat solid food. Its been about 3 weeks since she ate solids.
     
  6. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    Andrea,
    let's hope that your mum will improve, and certainly it will give your dad a break. Just make sure that even in respite care the staff give her enough to drink! It can be even harder for them, because they are all so busy! But I'm sure you are supporting your Dad, and that's a great help for him.
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Andrea,

    just take things as they come - all situations affect different people in a variety of ways. Expect the best, but always be prepared for less. Main thing is not to be in a downer because of things that may happen, save that for things that have already happened, if you must have a downer. [I'm a downer expert from experience since Jan has been ill! ]
     
  8. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    Did the respite care home change your mums medecine with a doctors prescription?
     
  9. Andrea

    Andrea Registered User

    Sep 3, 2003
    8
    Isle of Wight
    Yes, it was the doctor who was concerned about the increased risk of stroke and heart attack with respiridone and insisted that she be changed to something different. It is the CPN who has now made arrangements for her to stop the new stuff and go back to respiridone. I assume he has got or will get the necessary authorisation/prescription. Whilst you don`t want loved ones to suffer unnecessary side effects to drugs, if someone in my mothers state is on something that has done and was continuing to do its job and it is known that any change in circumstances can be detrimental surely the doctors should be able to weigh up the pros and cons and perhaps realise that sometimes it is worth the risk and leave well alone. I know every case is different but the change in medication seems to have done much harm in my mums case. She has gone back to the respite unit as she had become unmanagable at home. They will restart the respiridone whilst she`s there and we just hope that she improves enough for discharge back into my dad`s care. He has always insisted that he would care for her at home as long as was practicle.
     
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    The doctor at Jan's home took her off Respiridone and I asked her to be put back on because of adverse effects of changing medication.

    The calculation of balance of risks is a horrible thing, but a necessity, I fear.
     
  11. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    changing medication

    I think the important thing is to monitor the effects of any change for long enough to see what's happening, in a supervised environment, and to listen to what those closest say when they notice things!
     
  12. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    slightly off topic. My mum has been an (unstable) insulin diabetic for over 40yrs.
    when she went for a weeks respite in a privat home she hated every minute of it. Once she was home I checked her test result diary and Insulin given.
    It seems she was kept "high as a kite"
    I feel that they were afraid of her having a "Hypo" which if they were not used to would have meant out of hours dotors and/or 999 call.
    Snuffy
     
  13. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    AD + diabetes

    That's an extra problem, isn't it? If there's a chance of her going back to the same place for respite in future, how would you feel about that? Would you want to talk to them first?
     
  14. Andrea

    Andrea Registered User

    Sep 3, 2003
    8
    Isle of Wight
    Things have moved on since my last message. Mum went back to the respite unit on Monday and on Wednesday took a serious downturn. She now has a severe chest infection. They asked my Dad whether he wanted her to receive IV treatment as they couldn`t get antibiotics into her orally. After speaking to my sister and I it was decided that no treatment should be given. She still hasn`t eaten or drunk anything and again no intervention is required. I went up to see her on Wednesday afternoon. Quite a trek as I live on the Isle of Wight and they are in Herefordshire! but I got there in time to go to the unit Wednesday evening and see her. What a sorry state she`s in, although she seems quite peaceful. They have advised us that it will only be a matter of days at best now. I have had to come back to the Island as I have my own family to consider but will return to be with Dad asap. My sister lives close by so I know she is there for him. I`m no medical expert and I am some distance away and rely on what dad tells me but I can`t help but think if they hadn`t mucked about with her medication in the first place we wouldn`t be where we are today.
     
  15. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    'if only...' - don't go there!

    Dear Andrea,
    I know these must be very difficult days for you, your sister and your Dad. Just try not to think 'if only'... We can never know what might have happened 'if only'.
    So stay with the present; you are facing a very difficult situation and you're doing a great job supporting your Dad, who must be hurting a lot; it's very hard to watch someone you love die slowly. Even when you're not close to him physically, I'm sure he knows that you are thinking of him and that will help. If your Mum is peaceful and your Dad has time to come to terms with what's happening, and has people around who love and support him, that's the best that can happen now.
     
  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I'm going to sound awful now, but in a way, what is happening to your Mum is what I would [almost] welcome happening to my Jan.

    My greatest horror is her going into a vegetative state for many years.

    So, your Mum is peaceful, though very ill at present. You have done all you can for her - obviously still visit while you can. Support Dad because, although there may be some relief that Mum's illness is over, when that happens, there will be a huge empty hole in his life.

    As Angela says, don't do the 'what if' game.

    Also, of course take very good care of yourself.
     
  17. Andrea

    Andrea Registered User

    Sep 3, 2003
    8
    Isle of Wight
    #17 Andrea, Aug 20, 2004
    Last edited: Aug 20, 2004
    Thanks Angela and Bruce, your words really help. Bruce, I have longed for a long time that Mum`s (and Dad`s) suffering would soon be over but now it`s happenening I feel guilt for having those thoughts and wishing my Mum dead!! The only thing that helps me with those feelings of guilt is the fact that my Mum left us a long time ago and all we are losing now is the empty shell. I will try very hard to remember her as she was before AD and not the last weeks, months and years with the disease. In a way, with her death comes the official ok to grieve the loss we suffered some time ago.
     
  18. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    I share the same horror as Bruce about progressing into a vegative state,how do those brave carers with a partner in that state cope?
    All my working life I have had some contact with mental illness in one form or another and I feel very bitter and angry that we have ended up like this.
    But it's not over yet and the dread is what is to come?
    I must follow my own preachings
    Day to Day

    kind thoughts Norman
     
  19. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    Andrea, I don't think 'wishing her dead' is quite the same as 'not wishing to prolong her life'. Very understandably, you don't want to prolong her life now, because, as you say, she's just a shell, and really she left you some years ago. And as there's no hope of her recovering, there's only one route out. Let's hope that is smooth for her.
     

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