1. Morganlefay

    Morganlefay Registered User

    May 20, 2014
    66
    Buckinghamshire
    My Mum had Alzheimers, ending up with it being very severe and needing to go into a home, so I know exactly what it's like. But now my OH has the very early stages and I really would like some advice. he has trouble with remembering the right words, tho sometimes he's fine and you wouldn't notice. But conversations sometimes go on and on because he's groping for the right word, and I don't leap in and tell him because that doesn't seem the right thing to do. Can someone tell me if that's the right strategy ? And then he has patches of doing things about the hous terribly slowly, so I want to leap in and finish whatever he's so slowly doing. I am a very patient person (I had twins who seemed to spend their youth dawdling), but living life at this pace and endlessly waiting for him to finish the sentence, or whatever he's doing is really taking it out of me. I know there's much worse to come, but please can a kind and wise person here tell me how you train yourself not to feel impatient, or is there a good book or something I can read. If I feel this bad when he's hardly ill at all, what's it going to be like when he gets worse ? He's also got very determined that we should both do the things he wants to do, so that I feel as if my own life is seeping away and his illness is taking over both of our lives. I know that sounds very selfish, but I suffer from depression (have had a lot of treatment for it, and it just keeps coming back again), and I feel very down.
     
  2. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Oh sweetie, I wish I could tell you of a great book, or marvellous strategy, but the simple answer is "everyone is different". I can only speak of my own experience, and it was a very long and slow learning curve for me.

    In the early years, I corrected John on every wrong word, or fact, and "helped" him with slow tasks, but as we approached the middle years, he changed from being appreciative of my correcting, to hostile. For example, he loved gardening, but was so distraught when he couldn't remember the names of flowers, that I drew sketches of each flower bed, and drew coloured flowers, and when he remembered the name of one, or I Googled it, and found out its name, I wrote it on the sketch.

    That really helped so much, as when he forgot, I could then just point to it on the sketch. I found that if I didn't want to scream, with frustration, or bang my head, hard, against the wall, I had to change tactics. Though this took ages, it has now meant that I too know all the names!

    By the last years (he died 12 years after diagnosis), I agreed with everything he said, as ridiculous as these things sounded. At the end, when he lost the ability to speak, or even recognise me, I felt I'd got through the journey. There's no right or wrong way to do things, because we're all different, and our loved ones, who have this dreadful illness, are all different too.

    Whilst you're both able to, make as many memories as you can. You'll learn the patience from somewhere, because you have to, but that stage can be a long way off, and no 2 people have the same problems with this illness. I wish you and your husband well. xxxxxx
     
  3. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Hi Morgan
    I'm so sorry life is giving you a difficult time at the moment.
    Many moons ago I was a speech therapist and I would say don't let him struggle too long for words - words are just a channel for communicating an idea and whilst it is frustrating if someone jumps in the minute you being to struggle (and often comes up with the wrong idea lol) it is equally frustrating when someone lets you struggle for so long that you lose track of the idea and it stops communication at all levels. I would suggest that if it is clear to you that he can't find the word then help him out - if he gets cross then you will have to readjust your time!!! but my guess is that he will be a little relieved.
    As for the 'dawdling' with tasks I wouldn't intervene unless he is unhappy or frustrated or you have a time deadline. I used to 'switch off' with mum and let her get on with it or suggest tasks that could go on indefinitely without affecting anyone else in the house. She needed to be needed - me too lol - that didn't change with memory loss just the speed!! i do sympathise :)
     
  4. Morganlefay

    Morganlefay Registered User

    May 20, 2014
    66
    Buckinghamshire
    Thank you. You've just made me cry, as I find that kindness does these days. I am going to print off what you've said and keep it my purse, and read it when I feel down. OH and I don't ever mention his problem, he clearly wants to prete nd that it isn't happening, and my two grownup daughters have small children to care for and busy lives. But the kindness of strangers is a wonderful thing, especially if they've been down the road you're travelling on. Thank you very much. xx
     
  5. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello Morganlefay, so sorry you are going through this difficult time, my hubby would start to say something then forget what he was going to say, l would help him finish a sentence, he always wanted me to help him, but friends would say let him finish, but l new he couldn't. So do what you feel is right for you ☺
     
  6. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Oh, I'm sorry if I made you cry but I know exactly what you mean, about acts of kindness doing that. My lovely once-fit husband, of nearly 50 years, eventually changed beyond all recognition, but it originally took 2 years to persuade him to see the GP, as he too was in denial that anything was wrong.

    But when, a few years down the line, he was prescribed Aricept, that gave us a good few years of things staying the same, and I was able to leave him and have weekends away, and also do things together. It was only during the last few years, that things deteriorated, but you find ways and means to cope.

    Although I've said it many times on here (apologies to all those who've read it before), last year John informed me that "Mrs Thatcher is in the hall, it's a Sunday morning, and I'm in my pyjamas!". It would have been pointless explaining that (a) she wouldn't be visiting us and (b) she was dead.

    I received this info from John whilst I was on the loo, so I finished what I was doing, went into the hall, and speaking to the wall, said something like "Oh how lovely to see you Margaret! But I'm sorry, it's not convenient for you to visit right now". Then I opened the front door, calling to the air "mind how you go!", and that was that.

    According to him, we constantly had loads of visitors in our bungalow, I had countless affairs, and there were other people in his bedroom, making a noise, and stopping him getting to sleep. So I marched into the empty room, flung the door open and yelled "This is John's room! Now you can all bl**dy leave now!"

    You just learn ways and means that work for you, otherwise you'll go up the wall. John went into a Care Home in the summer of last year, as I badly needed a knee operation, and 6 months later, after 3 UTIs, one after the other, he died. That was on the 23rd December, and his 76th birthday would have been on Christmas Day. By that time, he was doubly incontinent, violent, couldn't walk or talk, or know who I was, and I was thankful that after suffering for so long, he was at peace.

    I have no siblings, my son lives in the USA, my daughter, who lives 10 minutes away, has Mental Health problems, and is currently not talking to me. I've been down there in the pits but, thanks to the lovely people on here, I've got through it. You'll get so much support from the wonderful folk on TP, and if you ever want to PM me, please feel free to do so. xxxxxxxx
     
  7. Optomistic

    Optomistic Registered User

    Jul 24, 2014
    109
    Manchester
    My husband has Alzheimers he struggles with his speech and memory and was diagnosed 15 months ago.

    I go out with him everywhere and when he cant finish his sentances i fill in what comes next. You get used to it in the end but it takes time. Some days it upsets me because he wont joint in conversation with other people and they think he is being funny. He also has a very bad memory but we still enjoy life and get out a lot.

    Im coming to terms with it more as time goes on it becomes a way of life but not one i wanted to happen.
     
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I love these stories Scarlett - they are exactly what living with dementia is all about - hugs to you too ((((((((((((((((((())))))))))))))))
     
  9. exhausted 2015

    exhausted 2015 Registered User

    Jul 5, 2015
    624
    Female
    stoke on trent
    Hello morganlefay it's not easy living with dementia and patience can be hard to find sometimes I usually go into another room for a few minutes and count to ten, has for finding the words for your oh I would just do what you feel is right, I usually help my dad when he is struggling with finding the correct word I always do it casualty and not make a big deal out of it and he does seem to appreciate my help after all what harm can it do when the mind is deteriorating so much.. Hope that things will improve for you soon xx
     
  10. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Loads more where those came from! ;) It just helps others to know that they're not alone. Looking back, I can laugh at some of them, like when he asked me if I was "with child"! Not only does it sound almost Biblical, but seeing as how John had a vasectomy 45 years ago, I had a hysterectomy over 30 years ago, and Doing Things Like That are not really tempting with double incontinence, it was funny!

    But I just said "hmmmmm, I don't think so but I'm not sure. I'll let you know". Oh boy, it seems a million years ago. xxxxxxx
     
  11. tigerqueen

    tigerqueen Registered User

    Mar 11, 2014
    75
    Essex
    #11 tigerqueen, Nov 24, 2015
    Last edited: Nov 24, 2015
    Oh Scarlett. You are so good with words of encouragement, support and wit. Thank you so much for sharing, I really appreciate your humour in this stressful journey.
    Morganlefay - I wish I had the endlesss patience needed but I often don't. I have learnt however that hubby needs 2 hours to get ready in tbe morning, so if something has a set time then I work back 2 hours to the time he needs to be up to give us the time at his pace.
     
  12. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Show me someone who has endless patience, 24/7, whilst caring for someone with this terrible illness, for years and years, and I'll show you a fiberoo!!! Again, as I've said before, when I took my marriage vows, I fervently believed every phrase that preceded "I Do". :)

    But when I thought of the phrase "in sickness or in health", I was gazing into the eyes of my lovely strong man, who adored me, and I had a brief vision of myself, tenderly stroking his fevered brow, if he had a cold (man flu hadn't been invented in the 1960s;)), perhaps feeding him soup, and him, gratefully, whispering hoarsely (cos he'd have had a sore throat as well) "thank you my darling, what would I do without you, you are truly an angel .............." :D

    Not for a single second did I imagine myself repeating everything a million times a day, clearing up after the joys of double incontinence, being assaulted both physically and mentally, trying to manage on a couple of hours unbroken sleep at night. Or being accused of stealing things he couldn't find, or hiding them on purpose, being accused of having affairs, even with complete strangers, hating myself for feeling resentful, and being so insanely jealous of other couples who had ordinary and normal lives. And no Alzheimer's in their lives.

    I could cheerfully have murdered people who said "but he looks so well!" Or those who would say "yes, I know what it's like, my Uncle/neighbour/third cousin 6 times removed is the same". They probably visited once a year, if that. People who don't live the lives we live, or have lived, haven't a clue. It is only on TP, where others know exactly what we mean, that you can truly have understanding.

    I haven't read a single post where a spouse, who is arranging for their loved one to go into a Care Home, hasn't mentioned the word "guilty", either before, during or after. Carers have the hardest journey of all, and those folk on TP who have seamlessly acquired adequate home care, and/or support are few and far between.

    I am not, and never was, a mixture of Mother Theresa, Princess Diana and the Angel Gabriel. I was just a human being, who, with their husband, was the reluctant recipient of this Russian Roulette that is Alzheimer's, and who tried to do their best.

    And that's all any of us can do. I've now got through 11 months of The First Year without John, and I know that I tried to care for him as best as I could. My best may be better than some, and worse than others, but it was all I had.

    God Bless all carers out there - you're doing the best you can, and who can ask for more than someone's best? xxxxxxxxxx
     
  13. Morganlefay

    Morganlefay Registered User

    May 20, 2014
    66
    Buckinghamshire
    Thank you Scarlett, these sad tales do help me to feel that there is kindness and support out there and I'm so grateful to you - all. I like the fact that sometimes our poor ill partner can do something which is genuinely funny, tho others might think us cruel to laugh. I put Wolf Hall onto his ipod to see if he could manage to listen rather than read it, and a few weeks in I asked him how he was doing with it. he said he thought it was a bit confusing (and indeed it is) but when I looked at his ipod I found it was set to the 'Shuffle' function, so he was getting random chapters - no wonder it wasn't being much fun. But I did laugh (quietly, and to myself.
    I'm sorry that your daughter isn't able to support you more, I think it would make so much difference. My two grownup daughters really don't want to talk about it, and apart from telling me that I should 'make him talk about it' which I don't want to do they like to pretend it's not happening. And indeed its my problem, not theirs. I'm sure one day they'll be able to be a bit more supportive, and I hope your daughter will be able to feel able to give you some love and support.
    I am so grateful to you and send a huge hug, and thanks ()
     
  14. Morganlefay

    Morganlefay Registered User

    May 20, 2014
    66
    Buckinghamshire
    Thank you so much. It's hard to get it right day after day, and the dread guilt is always there making you feel that whatever you do won't be the Right Thing, but we can only do what we think is the right thing at the time. and I need to keep remembering that, so thank you ! xx
     
  15. Morganlefay

    Morganlefay Registered User

    May 20, 2014
    66
    Buckinghamshire
    Thank you so much. All the things the kind people on here are saying are giving me a bit more confidence just to carry on as we are, hoping it's making his life better. he was diagnosed a couple of years ago, and has been on Aricept all that time, with it seeming to have slowed down the illness quite amazingly, so we're lucky really as I do know people who've gone downhill much faster, and I think we need to be grateful for all the good things which happen, like Aricept working so well for him ! xx
     
  16. Morganlefay

    Morganlefay Registered User

    May 20, 2014
    66
    Buckinghamshire
    I love the stories too, and they take away some of the awful guilt when I feel I shouldn't be laughing at silly things which happen. But it's not him, it's the illness making these things happen, and being almost 'given permission' to laugh is some sort of relief. Thank you again Scarlett xxx
     
  17. canary

    canary Registered User

    Feb 25, 2014
    9,327
    Female
    South coast
    Hi morganlefay, it is OK to laugh. It is not laughing at them, it is laughing at the things they say, the things that we do and the situation that we are in. I think it helps to make our life easier if we can laugh. Its a bit like laughing at the things small children say and do - its not done in a nasty way.
     
  18. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    So true, and sadly, at times, our loved are like children, just large ones. If you didn't laugh occasionally, you'd go up the wall, through it, and down the other side. :)
     
  19. Mulberry50

    Mulberry50 Registered User

    Feb 5, 2015
    10
    Maidenhead, Berks
    Dear Morganlefay
    I have read your original posting with some empathy. My OH was diagnosed about a year ago and I seem to treading a very similar path.

    I am in the process of reading two very enlightening books by Christine Bryden titled "Who will I be when I die?" and " Dancing with dementia". Whilst I can't say I am enjoying reading them (who enjoys anything connected with AD?) I am finding them very interesting as it is Christine who has dementia and therefore is written from her perspective. I heartily recommend them as a means to understanding how someone with dementia sees the world as I am unable to get this from my OH.

    One of her comments is "Be sure we would like you to help fill in the gaps in our struggle to find words and sentences before you do so. Don't correct us, just try to understand the meaning of what we intend to say".

    We are only human and our patience is only as long as we can sustain. Remembering that it is their brain and not them, themselves that tests our patience helps me on bad days together with counting to ten (several times over!) and saying a prayer or two. What will happen when bad days become appalling days, I can only guess.

    Wishing you the very best as we walk this long and winding road.
     
  20. Jilly1

    Jilly1 Registered User

    Jul 22, 2013
    54
    Nottinghamshire
    patience

    My heart goes out to you. My OH repeats the same moan over and over throughout programmes...."it's not as good as it used to be". I remain quiet or just mmmmmm in reply. It is driving me nuts and like you worry how on earth I will cope later on. I find I am permanantly stessed, depressed and agitated. I wish you from the bottom of my heart, all the very best
     

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