1. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,919
    Female
    Dundee
    Today my husband and I visited the memory clinic so that he could get his next prescription for Aricept. It seems that he had scored a little less than last time on the memory test and they thought he was a bit down so have suggested anti depressants. When we went in we were both feeling good - accepting of the situation but taking every day as it comes and trying to make the best of it. Even though he is 20 years older than me he looks very young for his age and we have always faced everything in a positive way. I know he gets depressed from time to time and he does feel down but we deal with this. What upset me today was the way everyone looked at us with such sympathy. I know things will get worse but we work hard at trying to stay positive. He can do almost everything he used to be able to do. He isn't forgetting who I am or who family members and friends are. We go to the theatre, we walk, he does crosswords and so on. I just feel that having to go to the clinic in a hospital for the elderly where he can see people sitting around and then being treated (with the best intentions) as if we're poor souls does nothing for our frame of mind. I know there are no answers to this but I just wanted to get it off my chest!

    I also wondered if anyone had any ideas that would keep him from getting bored through the day! He has never been particularly sociable (in that he doesn't have close friends) so that he doesn't have people coming round. I work in quite a responsible and sometimes stressful job so I'm sometimes a bit late home. He has no problems in remembering where he lives or anything but he doesn't want to go out to join groups. There's a limit to cleaning and DIY so I think this lack of activity might contribute to his boredom. I think he's afraid to start anything new like painting or writing (he used to write a lot) in case he can't do it. Any suggestions as to what he might do which will make him feel he's occupied in a worthwhile way?

    Sorry for this rambling message.



    Thanks for listening.
     
  2. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    Izzy
    You are still positive, trust me it shines through, and that is not so easy to do. :)
    As you say unfortunately there is no other way for your husband to get the treatment and specialist support he needs other thanto see those at the memory clinic. The consultant and his/her team may do home visits, so maybe ask about that.

    As for the anti depressants, they can only help.
    I'm not talking of you personally, but it annoys me that there is still such a stigma attached to people having tablets to help with their mood. If ones brain isnt producing enough of the chemicals it needs to make one feel good, when it needs to be, then why shouldnt we get that chemical artificially. (I doubt thats this is 100% correct neurologically, but its about right!) Bloody hell men can get Viagra when that bit aint working right!

    I have a particular client who is 59 and his wife is 32, he recently had to be admitted for assessment in our local ward, and the staff there commented to me on how extra cruel the situation is, so if they did llok sorry, believe that they certainly shouldn't of showed this to you, but we have feelings too.

    As for a hobby, it may be difficult for your hubby to learn a new hobby, especially if there is some skill required. And at this time he may not choose to write because he is down, give the tablets some weeks to work, then encourage him to write again. Of course he really may not want too, because it will be too much of a reminder of when he was better, so go gently.
    As for other ideas, ummm, puzzles, jigsaws, thats you may be able to put on a wall. I'll keep thinking.
    Change that sad face, and keep plodding.
     
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,919
    Female
    Dundee
    Positive again!!

    Thanks Angela - that reall;y helped me. Today my husband spent quite a while writing a story for my great nephew! I left work early and we went for a long walk along the cliffs fairly near to us. So I feel much better today! I do appreciate what they do at the clinic - I shouldn't be critical!

    I think jigsaws may be a good idea. He is definitely still good at crosswords and number puzzles - much better than I ever was!
    We're off on a Nile Cruise in 3 weeks time and he's really looking forward to it.

    I know we'll both stay positive throughout the ups and downs!

    Thanks again!
     
  4. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    Now thats better!
    Ive put me sun glasses on thinking of you on that cruise and wishing we were all with you.
    Im so glad you feel better.
    We all get good days, excellant days, bad days and bloody terrible days.
    Youll have to show us a photo of you on the cruise.
    I'll pester Nada to put a photo board in time for you coming back!

    Do you know, you've given me a buzz too.............:D
     
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,919
    Female
    Dundee
    Staying Positve again!

    Great idea Angela!! I'll get a photo organised!!

    By the way Bill has decided that jigsaws might be a good idea!

    Cheers
     
  6. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    Sunshine & smiles

    I hear someone has returned from their travels.....

    We need a picture board!


    {{{{{{ NADA}}}}}}
     
  7. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    Thanks for that Nada.
    Now we have no excuse not to post pics.
    Oh I have, I cant use the scanner.....
     
  8. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Dear Izzy,
    I have never used a chat site, but am so glad I discovered this one: I have been reading message upon message while my husband has been pottering between bathroom and bedroom this morning, and your situation seems so similar to mine that I feel compelled to say 'hello'.
    My husband is 73, and we always used to call him our Peter Pan, as he looked and behaved like a youngster (sadly, this is not so any longer, as Alzheimers has robbed him of such a lot of his bubbly personality). I am 52, and still as much in love with im as I was when we got married nearly 30 years ago - and they all said it wouldn't last!!
    My husband has been on aricept for 3 years and 3 months, and it is difficult to know how much good it is doing him, as i obviously have nothing to compare. i just dread to think how much worse he would be without it....
    Support, so far, is negligible, as most of the things that might be available quite simply are not suitable: my husband gets disoriented and lost, even in our little village where we have lived for over 25 years, and he has not driven for about 18 months now, so he is quite 'stuck' (I am out at work from 7.45am to 4pm during term time). I used to think it would be so much nicer for him if we lived in a busy town - however, i now see it as a blessing that when he goes for his daily walks (which he loves), at least he cannot go too far, and there is usually some kindly soul who will point him in the right direction or even walk/drive him back home when he is lost and agitated!
    Day Centres etc. are not a realistic option (yet), as he is too active and independent (in his own mind, at least), to be looked after in this way.
    --- I think I will have to get back to you with 'part 2' of my lengthy introduction, as i feel i need to join my loved one!
    Till later
     
  9. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,919
    Female
    Dundee
    Dear Carmen,
    I can't believe how similar our situations seem! It's good to hear from someone who obviously understands the situation. I see from the fact that you mention term time that you work in a school - so do I! I'm a primary head.

    I hope to hear from you again!
    Izzy
     
  10. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    Hi Carmen and welcome to the site

    Hi Izzy... wheres that pic? Ha ha not getting away that easily!
     
  11. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Hello Angela,
    Thanks for your 'welcome' - I must say, it feels rather strange to suddenly belong to some sort of 'club' with so many different messages, tips, ideas etc. about Alzheimer's, where everyone else knows that we are not just coping with a bit of forgetfulness. I find one of the toughest problems is the feeling of embarrassment, when outsiders (or sometimes even family members!) look at my husband as though he was mad, or drunk, just because his mind is a bit muddled.
    I have just read a new book which has helped me enormously in accepting the role I play as his carer. Would it be OK to mention the title and author, or would this be regarded as advertising?
    Sorry: I am new to this way of communicating, and don't want to break any rules!
    I look forward to your reply.
    Carmen
     
  12. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    Hi Carmen
    Oh yes ..... you are not alone!
    (Im glad Halloween has passed, that sounds spooooky!)

    I'm sure the details of the book would be welcomed by others, and dont worry to much about rules, we have an excellant moderator who would politley put us right.
     
  13. Fiona

    Fiona Registered User

    May 31, 2003
    5
    East Sussex
    Hi my dear

    Dundee is one of my favourite places even though I now live in Brighton. Quite right to be fed up with sympathy, whats needed is simply meeting people where they are, if it helps sympathy means the other person has a problem not you both in this context.

    How about a bit of gardening or decorating for old people through a volunteer group? Everyone needs a purpose and whether your husband can manage for 2 months or two years is irrelevant. Seize the day!

    Good luck

    Fiona
     
  14. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,919
    Female
    Dundee
    Thanks Fiona - I'll try out the suggestions and I appreciate your words about sympathy etc!!

    Angela - I've tried to attach a pic but my IT skills are obviously not as good as I thought they were! I keep getting timed out and the connection breaks. I'll try again when I have more time.

    Appreciate all the comments and thoughts!
     
  15. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Hello again, and thanks for your reply!
    The book I have just devoured and passed on to my daughter is called "Learning to Speak Alzheimer's" by Joanne Koenig Coste.
    It has a very american slant, but a clear approach, with good tips and a deep insight into the way the illness affects both the patient and carer. (Available from the 'YOU' bookshop)

    I found it empowering to have confirmation from an authority on the subject, that I am not 'soft' in pandering to each situation, and that I should not feel too guilty about the increasing white lies, which help prevent stress and confrontation. - I am no saint, but I would not lie to anyone, least of all my husband, which is why I get so upset when I have to make up a story to make things smoother and easier ....

    Most chapters in the book, by the way, start with a little poem, and this is the first, which I particularly like:

    My head feels like an old depot,
    worn by time and tears.
    No more locomotives passing through,
    cafe filled with tales and baggage.
    The old depot's barren now.
    There has been a great brain robbery.

    Bye for now.
     
  16. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,919
    Female
    Dundee
    Nada - I have tried quite a few times now to attach a pic to a post but with no success. I keep getting a message to say I've been timed out or something. Is the size of the picture I'm trying to attach to big do you think?

    Thanks
     
  17. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    Hi Izzy
    Um no idea, apart from, is it in the relevent format eg Jpeg? We'll have to wait for Nada Im afraid.

    Hi Carmen
    Yes nice poem, maybe our librarian will tell us if its available from the society too.
     
  18. Helen_old

    Helen_old Registered User

    Dec 29, 2003
    26
    WALES
    Hi all,

    I've just finished reading Learning To Speak Alzheimers, ISBN 009188672-4, bought in Waterstones bookshop. Thanks for recommending it Carmen, I thought it was excellent . For those of you that haven't read it , it's about a very positive approach to caring . It focuses on maintaining your loved ones self- esteem & helping them enjoy their remaining skills, rather than just marking time.
    I find it difficult to express how i feel about my mum's illness & how I would like her to be cared for, to people close to me who have a different outlook or approach. I feel I'll just end up having an argument or appearing critical which I don't want.Now I can just quietly pass on this book & ask them to read it.
    Any further suggestions regarding good books would be appreciated.

    Thanks again Carmen

    Take care

    Helen
     
  19. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Dear Helen,
    I know what you mean - I wish I could afford to buy lots of copies and hand them all out. I have mentioned it to lots of friends and relatives, and they all want to borrow it. The hard thing is getting it back again in order to pass it on further. Everyone is so busy, that I guess reading books is just not top of their agenda, and their 'need to know' is not quite as urgent as that of a direct carer. Mind you: patience has never been my strong point, but I am learning .......

    Spread the word, Helen, and good luck with putting it all into practice.

    Best wishes, Carmen
     
  20. Jude

    Jude Registered User

    Dear Izzy,

    Dealing with boredom is pretty difficult - especially with the foul weather at this time of the year, which makes going for walks a bit iffy.

    I've been buying DIY kits from the local Garden Centre for my father to construct. So far he's made a wooden plant trough and a wooden wheelbarrow and he's made an excellent job of them and gained a great deal of satisfaction from doing so. It was wonderful to see him looking so pleased with himself.

    The kits come with large printed instructions and diagrams which are easy to follow and cost approx £20-25 each. Additionally, he will be able to fill them with plants in the Spring which will be another project for him.

    My father is not interested in jigsaw puzzles unfortunately. He prefers projects that are practical and will be of use later on, so the planters fit the bill really well.

    Do hope you have a wonderful holiday.

    Jude
     

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