1. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    I'm feeling very flat today. There has been so much deterioration in John over the last year.

    Last May John and I were on that fateful cruise where he contracted the Norwark virus, and so much has changed since then.

    His language has deteriorated to the extent that he can no longer watch TV. He is so bored. All he wants to do after tea is go to bed. If I let him, he sleeps for a few hours, then is awake again by the time I go up. If I don't let him, he just sits and sighs until I give in.

    His wonderful personality is also beginning to change, as he now demands his own way, something he would never have done before.

    He is partially incontinent, which makes it difficult to go anywhere, as he doesn't like to wear pants during the day. Holidays are now out of the question.

    He used to spend hours painting, but can't do that any more. He can't do anything round the house. I know that there is still intelligence there, the way he coped with the eye test shows that, and I'm not surprised he's bored.

    I know my problems are small compared with many of you. I didn't get any sleep last night, his bruised ribs are making him even more restless than usual.

    I'm sorry. I'm just feeling sorry for myself today, and I needed a moan. I won't do it again (for a while!) :(
     
  2. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Hi Skye - understand exactly how you are feeling!!!!:( :(

    You will be tired with the extra problems of cracked ribs - David had this when he had serious fall after his stroke. I had to get up and help him in and out of bed everytime he needed the loo (which was then every half hr.)

    The boredom is something I wish I could solve. Yesterday I gave David some of his Mums old family photos which we have never sorted. I suggested he threw away any he did not recognise but to put the others on one side for us to put in album. 1 hr later he had cut up a few put them in a plastic bag - then could not remember what they were!!! The rest are untouched.

    My friend's brother who had AD spent much of his time doing painting by numbers - but David cannot do the adult ones (too complicated) and the children's are just too babyish. So far I have not managed to find anything in between.

    I think whatever we try to find to relieve the boredom is doomed, but like me I am sure you would welcome any ideas.

    Does John read? That is the only thing that helps here - alright I am not sure that the material is absorbed but does that matter?

    I have just three hrs on my own as David has gone to day centre today - but I have to fetch him at 3.00 pm. He moans and groans so much before he goes I am not sure that it benefits me greatly!!:eek:

    You are so good at cheering everyone up here, I wish I could be more helpful.

    Take care Jan
     
  3. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Hello Skye,

    Sorry to hear you are having a bit of a low day.

    I understand how difficult things are for you.

    I've seen BIG changes this last year too, and like you now have the incontinence side of things to deal with.

    My husband is becoming more and more demanding (it's very child like), no capacity to reason, or explain things to him AT ALL.
    It seems that you end up having to 'give in' some days.

    Sleep (what's that?), can alter how you feel too. I know, I've been there.
    I hope you manage to get more rest over the weekend.

    No problem AT ALL in moaning as you put it.

    Can your John take something for the pain ?
    If only he can sleep, you might be able to rest.

    Take Care

    DaisyG
     
  4. Gromit

    Gromit Registered User

    Apr 3, 2006
    187
    Edinburgh
    Hi,

    So sorry to hear how things are for you at the moment. Bust ribs are so painful, I hope it eases off soon for John and that you can re-gain some of that much deserved sleep you need.

    You are not moaning - you are giving your feelings a very much needed release - so please don't apologise - that's what we are all here for.

    I do hope things improve for you - in whatever way they can.

    Wish I had more to say - anything to help you feel a bit better - but I hope you know you are being thought of and hopefully that will help a tiny bit.

    Take good care of yourself.

    Vent whenever you need to!

    Love
    Alison
    x
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,652
    Kent
    Hi Hazel,

    I`m so sorry you`re having a bad day, well I hope it`s just a day and will not continue.

    Things do seem to be deteriorating for John, and even though you were so pleased with the way he coped with his eye test, it highlights just how sad are the things that please you.

    Tiredness is very depressing. Thankfully I don`t have broken nights yet, but I did when Dhiren was trying the Alzheimer drugs, and they really took it out of me.

    The inability to take holidays are another cause for a downer. You know I`m in that position myself now. When we have holidays, it`s something to anticipate, and now that`s gone too.

    You are always there to offer support and constrictive advice. I can offer all my support, but feel inadequate re constructive advice for you. You are already doing all the right things.

    I can ask you to take one piece of your own advice. Don`t apologise for moaning. You aren`t moaning, you are sharing, and that`s why we`re all here.

    Take care

    Love xx
     
  6. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    15,975
    Toronto, Canada
    Hazel,
    Keep moaning & carrying on. It does the soul good.

    What about some respite care? I think you need a break. Even if you don't go away anywhere, just to have a week or two to putter around the house will be restful. Or catch up on your sleep.

    I know it would be difficult for you to arrange the care, because I suspect you will feel guilty. But it's better for you to mentally and physically recharge yourself now. You know I'm right.

    Love & hugs,
    Joanne
     
  7. jeanierec

    jeanierec Registered User

    May 7, 2007
    121
    north yorkshire
    Hazel I don`t want to be presumptious ,as a very new member of TP , but I just
    wanted to say my thoughts and prayers are with you and John at this exhausting time.

    Love Jeanie x
     
  8. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hazel, thanks for sharing with us........never a moan............just commenting on how life is.

    I can understand how difficult it is for you and John, just sending you lots of love n'hugs.
     
  9. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Thank you all for the support.

    BeckyJan, John can't read at all, hasn't been able to for a while, his language has virtually gone. He could watch the soaps until recently, because they were on every night, so the people were familiar. He can't even do that now.

    Anything I say to him, I have to repeat three or four times, with actions.

    He's just asked if he can go to bed. (5pm)! I said not for three hours, but I won't be able to hold him off for that long. (He can't tell the time anyway, so it's academic).

    Joanne, you're right, I need respite -- today!. Tomorrow I may feel differently again. We'll see.

    I'm thinking of sleeping in another room tonight, but I suspect he'll come looking for me.
     
  10. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    Hello Hazel,
    Really sorry to read your news. It's odd, but I was thinking of asking you about John's painting today and here you are answering before I asked. If he can't spend HOURS painting, could he spend a little time, and then do something else, and then come back to it? Or try a different medium like crayons or pastels? Or is this just making things very complicated? So sorry you had a tiring night and here's wishing you a much better one tonight. Love Deborah x
     
  11. SusanR

    SusanR Registered User

    Apr 29, 2007
    19
    WisconsinUSA
    It is okay to be in the pity bag sometimes. It is so hard - could you take a holiday to regroup and look after yourself for a few days?

    Susan
     
  12. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Oh sorry to read that your feeling so low today , you moan away , your always a great support to me when I am on the moan , anyway its not a moan . your only human so its bound to get to you sometime .

    I know what you mean about not wanting to wear the incontinent pads , thanks for sharing as I thought I was alone on that one with my mother .

    I am wounding about music , would john respond to music you both like ?
     
  13. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Hazel,

    Sorry that today was a low day after the successes of the eye appointment.

    Keeping someone with diminishing skills who still needs/wants to be occupied happy is a major challenge. One thing that we've tried with my father-in-law, who also can't really follow much TV (some sports), is DVD's. There are an amazing selection of documentary-style DVD's out there with really beautiful images of wildlife, scenery, etc. .. Depending on John's interests concert and musical DVD's can be quite enjoyable. The are many places to order these online, for example ebay and AmazonUK.

    As for the issue that BeckyJan raised, finding images to colour for adults, I would recommend something like the colouring books published by Dover. Here are some of the titles listed on Amazon and you can see that they cover a wide range of subjects from abstract geometric patterns to horses and flowers:

    http://www.amazon.co.uk/s/ref=nb_ss_b/203-1856897-9273554?url=search-alias%3Dstripbooks&field-keywords=dover+colouring&Go.x=16&Go.y=15&Go=Go

    Take care,

    Sandy
     
  14. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Hazel,
    Nothing to add except that I'm thinking of you and sending my most caring wishes to you. Respite (even if you can't get it today ;) ) sounds like a good idea. I think it is important to remember that the Carer needs a chance to recover some energy and equilibrium or s/he cannot go on caring. So if you are having doubts about leaving John, try to see it as being an essential part of caring for him.

    Hazel, you are one of the most caring, supportive, helpful and informative people on TP - and that 's saying something, when you consider how many good people are on this forum!! The fact that you are coping with such difficulties and still find the time to support others is wonderful.

    And I agree with everyone else, MOAN away whenever you need to!! :D :D
     
  15. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Hazel,

    Sandy's ideas reminded me about jigsaw books. (Is John able to do, and keen on doing, jigsaws?) It became a challenge to find non-childlike pictures, especially when Dad had to have ones with under 50 pieces. I found that the Jigsaw books of animals or sea creatures were quite good. e.g.

    http://www.amazon.com/Ocean-Creatur...4904007?ie=UTF8&s=books&qid=1179527128&sr=1-1

    Hope tomorrow is a little better for you.

    love from,
     
  16. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    #16 Skye, May 19, 2007
    Last edited: May 19, 2007
    Thank you so much. It makes so much difference to know that people care. It's such a lonely business, and the reassurance is just what I needed.

    Jeanie, you're not being presumptuous, I appreciate your caring.

    I love the practical suggestions too.

    The DVDs are a good idea, Sandy. We have a set of Michael Palin DVDs which John used to love, but now he tends to go to sleep. He can't follow a film.

    Music, he enjoys light classical, but again tends to fall asleep. He's never really been one for musicals. Thanks for the suggestion, though, Maggie.

    The colouring books and jigsaw books are a great idea, thank you Sandy and Hazel. I've just ordered a selection. He used to enjoy jigsaws, but full sized ones are beyond him. The jigsaw books sound great.

    I'm sure he'll enjoy the colouring books too, he does enjoy looking at art books, and one of his carers is brilliant at doing this with him. If he takes to the colouring books it's something they could do together. There are some good adult ones, I'd never thought to look for them. Reasonably priced, too, so can be reordered.--or even scanned and printed out.

    I'll let you know.

    Thanks again. I'm still feeling fragile, but my feathers have been nicely smoothed! Hopefully, the smoothing will penetrate the extremely thin skin!

    Love to all,
     
  17. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Hope you are ok today - not too fragile I hope. I was going to suggest you got out into the garden for some relaxation, but maybe not if the weather is as bad as it is here.

    Just wanted to say how useful the Amazon contact was - I think it was Sandy who posted it.

    I am going to try David with the colouring too. I have tried jigsaws but they just do not work (I have to do them).

    My very first post was asking for advice about 'combating boredom'. One lady replied - her father just loved polising brass. She and her mother were also getting the local antique shop involved with his desire to clean - imagine that.
    Unfortunately when I ask David to do the silver or brass he takes weeks and weeks of putting it off, then I finally do it myself.

    Thinking about you. Take care Jan
     
  18. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Some ideas?????

    Hope you are better today.

    I've tried a few things to relieve the boredom too, but I think we are now past that stage. My husbands concentration/attention is so poor.

    We used to do things like ....
    ludo
    4 in a row (was quite a good game, as over fairly quick)
    cards - pairs/matching games.
    countdown

    You could try and get a MUCH LOVED photo turned into a jigsaw (might be expensive).


    Have you tried any teaching resources web pages?
    You can print off pictures from a range of ideas.
    It's not just for pre-school children.


    MIL is into Charity Shops.... you might find some games here.
    Sometimes one of those £1.00 type shops has cheap and cheerful games and toys. Then if they get bored after a few weeks you haven't spent a fortune.

    Some Library's lend toys/games......

    Just some ideas....


    Take Care,

    DaisyG
     
  19. cynron

    cynron Registered User

    Sep 26, 2005
    429
    east sussex
    couloring

    One of the last things my husband did was to sit beside me while i was on the internet and do his colouring in books that were for children. This way he was close to me and that is what he wanted.

    Cynron x x
     
  20. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi BeckyJan & Daisy.

    I'm still feeling fragile today, when I get really down it usually takes a couple of days to come back up. But you've really helped.

    Glad you're going to try the colouring books too BeckyJan, we can compare notes. I think John will go for them in a big way, he's terribly upset that he can't paint any more.

    He's not really interested in games, Daisy, but teaching resources is another good suggestion that I hadn't thought of. I'll definitely have a look.

    Picture snap cards might work, I'll see if I can get a pack.

    What brilliant ideas you've all come up with. As usual with TP, I started off just having a moan, and you've all come up with so much practical help. You're all great.

    Love,
     

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