1. Gwyneth

    Gwyneth Registered User

    Nov 25, 2015
    48
    I am interested to note the link between a new environment and a downhill spiral in cognitive behaviour. My husband is 72 and has been displaying trends in memory problems for probably 3-5 years. He has had scans which were clear of AD last year, been to memory clinics and cognitive stimulation courses. Diagnosis then was MildCI. We have followed all the advice of being active, sociable, involved, being as independent as poss. We have always travelled the world. Just recently we went to Oz for a wedding via Singapore for 5 days and then Melbourne and Cairns. I did all the arranging as has become the norm. We could have been anywhere - the disorientation and confusion and immediate memory loss kicked in instantly and over a short space of time I watched a major withdrawal of my lovely husband. Wherever we stayed he had no spatial awareness of the bathroom, started to show some night time incontinence and was moody depressed and aggressive. I now need to seek a review from the Memory team and face up to a progression in his dementia. He drives excellently and as long as he knows where he is going it is his lifeline to playing euchre each work and skittles and going to Lions meetings, all of which we are told remain essential. I leave short notes on what we are doing each day and live on a knife edge fearing for him. Guess it is all part of this blasted disease that robs our lovely people of their identity. We have been told no medication but should I push for help here? Feel I need this forum now so many thanks.
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    9,797
    Merseyside
    Welcome to TP Gwyneth :)

    Disorientation is very common. My dad now gets disorientated in familiar places like the GPs surgery.
    I do think contacting the memory team is a good idea.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    9,623
    Female
    South coast
    I too think that contacting the memory clinic is a good idea.
    My husband functions pretty well at home and in places he knows, but he is entirely dependent on routine. Take him out of familiar places and you can see his face growing blank and his eyes glazing over.
     
  4. Morganlefay

    Morganlefay Registered User

    May 20, 2014
    67
    Buckinghamshire
    Hello Gwyneth ! My OH was prescribed Aricept as soon as he had a diagnosis of Alzheimers, about 18 months/two years ago. It seems to have almost stopped the progression of the illness, and as he wasn't really ill to start with (just a bit slow and odd with words and things needing good spatial awareness) it has made our lives much less bad than I thought it might.
    We went to Jamaica last year and drove through France this summer. I noticed that airports with all the noise and bustle really disoriented him, and he was very fussed and unhappy, so I have determined to try to use smaller airports wherever possible (not Gatwick on a busy day for example ) He wasn't bad driving through France (I drove) but was completely unable to mapread which made it difficult as I had to keep stopping driving to check that he hadn't got us lost.
    Last year he had to have a knee replacement. I don't tell people that he has a problem, but I assumed that if the medical staff saw 'Aricept' on his notes they'd spot whta was wrong. His first post-op night was dreadful: he became very agitated, pulled out his catheter and a couple of other lines going into his hand and his back and the staff asked me in tones of surprise the next day whether he perhaps had some form of dementia. I was shocked that they hadn't understood that the very word 'Aricept' should have warned them.
    So my conclusion from the travelling and hospital problems is that he needs to be as unfussed as possible, so possibly no more long haul flights for us, and that I can't expect hospital staff to understand unless it's spelled out for them. My new rule is to try always to try to avoid noise and confusion, very crowded places and needing to make decisions (like mapreading in France) He does seem mostly OK to outsiders, but we had difficulties in hotels with his being unable to find the bathroom etc.
    if I were you I'd be very determined to get him Aricept if they think it might have the slightest effect on him. After all its you that has to do the caring and if one small pill could help you at all (I was very sceptical to start with) then they are being negligent in not giving him it.
    I have so much sympathy for you. I thought I didn't need Talking Point, but just recently I feel I do, and have had so much kindness from people on here that a couple of answers made me cry with relief and because other people understood. The Talking Pointers are kind and, best of all, understanding. Do PM me if you would like to, and I hope all goes well for you x
     
  5. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    445
    North West
    Hi Gwyneth,
    I'm in much the same boat as you MCI last year, Alz this year. Agree with others Aricept worth a try. Went to large Florida hotel at Easter, OH had reception call me many times, despite his wearing the hotel's armband with his room number on it. Finding bathroom in strange places a nightmare.

    The moods and sulking get me down the most. I find if day starts badly, usually something along the lines of OH saying he is going round the doctors for some new ailment, I end up being grumpy all day. Have recently typed up an A4 poster which sits on bedside table. It says "Start the day Cheerfully. Read calendar on phone or tablet. Discuss day ahead". Has had some effect.

    Travelling by air is awful at the best of times. We were so delayed on the M25 for Florida trip only got on plane by my crying and the Captain waiting for us (our children/grandchildren were already on board). We did do a cruise from Harwich last year which worked much better. Problem is destinations are limited.

    My husband is still driving, although navigation a problem. He was given a one year licence after diagnosis.

    I dread to think how much "care" the Chancellor is cutting at the moment. At least we have everyone on here to support us.
     
  6. Gwyneth

    Gwyneth Registered User

    Nov 25, 2015
    48
    Thanks for this very intuitive and understanding comment back. I have made an appt to see my GP next Tuesday to request a referral again to the Memory Assessment clinic as they put mu husband on hold at the end of last year because there was no change. However we are spiralling now and we need to get further help. Thanks for the encouraging news that medication has helped in your case. My husband also needs a calmer of some sort as he is erupting a lot more over trivial things and doing a lot of shouting and door slamming. Frustration no doubt and feeling inadequate. My guess is that we will have to wait until mid January for an appt. Take care. Gwyneth
     

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