1. janemary

    janemary Registered User

    Feb 1, 2004
    37
    Enfield
    My husband has vascular dementia and therefore has no memory of the past and his speech and understanding are poor to non existent. He has just gone into a care ward and I am at a loss to know what to do when I visit each day. He becomes distressed if I try to look at photos. or books. At home we used to take short walks or listen to music - but this was becoming increasingly difficult. At the moment I usually just take a little food and sit with him. When he is settled I hope to be able to take him out for a short walk, but can't risk it at the moment as his behaviour is very unpredictable. I feel he should be having more physical activities, but I am at a loss. Anyone got any suggestions?
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Jane
    Sorry to hear of your challenge - I've been there myself. Jan's diagnosis is of a mixture of dementias, part Alzheimer's, part vascular.
    Is the care ward in a hospital, or a home?
    If you try and focus on pictures and books it may cause him distress because it may seem to draw attention to his inability to comprehend fully. In such a situation he may withdraw, or become agitated [not sure which is worse, really].
    Sitting and talking - about nothing much - may be okay if he can't safely walk. Is he okay if you hold his hand, put your arm around him?
    Human contact becomes incredibly powerful and helps both parties.
    Does he like cakes? I take picnics into Jan - she loves Mr Kipling cakes. I also cook desserts for her and take in tiramisu and panna cotta from Sainsbury's. We have our own little fests and she really does enjoy them - it also takes up time and makes for an occasion when I visit.
    I find that it is best to take Jan into a quiet corner somewhere as she gets agitated if there is noise and movement around.
    The best option is to try a few things, find out what works for him, and what doesn't. Others on this forum may be able to suggest other diversions.
    All my best, Bruce
     
  3. janemary

    janemary Registered User

    Feb 1, 2004
    37
    Enfield
    Thanks for the ideas Bruce. Phil is on a continuing care ward at the moment as his behaviour was unmanageable in a residential home. I, too, take in treats of food but I think at the moment I'm feeling so helpless that I'm looking for some magic wand to make the illness go away. Do you think if we won the lottery we would be able to make the hospital environment more comfortable and provide a better quality of life for the patients or does the illness inevitably lead to this existence? People tell me that Phil is not feeling as bad as I am, but I know that he is suffering and is in considerable distress even if he can't express it in words that they can understand.
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Yes, a common problem is that most care homes can't cope with really challenging behaviour. I'm lucky that Jan's can, though as of last night even that is endangered because the administrators [PCT and social services] who have no practical knowledge of day to day hands on care, have called into doubt Jan's placement. The nightmare never seems to end!
    Back to you. When people say 'the patient doesn't feel it as badly as you think', I generally work out whether they have been personally involved in a dementia situation - that is, has their family suffered. If not then I take their words as they're trying to be helpful, but totally in ignorance.
    I look into Jan's eyes and I know she knows what is going on just as well as I do. I know it would be great to fool myself, but that wouldn't help her. Knowing her situation anyway keeps me be focused on doing my best to help her.
    Frankly, no hospital environment will be ideal. The best we can hope for is a suitably equipped care home with staff and management who are totally supportive - and that the PCTs and Social Services do what they are supposed to do and provide resource, and don't try to pretend they understand the needs of well serviced patients. [sorry, personal gripe surfaces again, but the people in my case have not even visited Jan, or asked me about her care]
    Keep on trying different things to see if they work for Phil, is my suggestion. When they do, adopt them and look for more. Let the staff know and they can try and do the same when you are not there.
    I hope this is helpful, but fear not.....
     

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