1. Michael E

    Michael E Registered User

    Apr 14, 2005
    618
    Male
    Ronda Spain
    It is now some 4 months since I gave up looking after Monique and put her in a specialist Alzheimer's home... Like every stage of the illness I thought I was doing it too soon and in the end it was only just in time... I thought POA was too soon, I thought Home Help Carers were too soon, I thought looking for the 'best' home was too soon so maybe that is a lesson.

    Monique is doing all right there. Well 'all right' is a relative term but I think she is doing better than if she was still with me.. She lost a lot of weight at the beginning, to the extent I was concerned for her life, but is now reaching more reasonable weight levels. They feed her proteins enhanced drinks and diet and she now feeds herself which she had stopped doing with me. She walks better - the AD shuffle has greatly diminished. Incontinence pants 24/7 but she can still ask for the loo but can never find it herself.... I understand she goes to the singing groups and enjoys it as well as 'drawing / painting... Clearly there are fetal accidents and problems but she is clean and well cared for. She is institutionalised. It is her home now and is beginning to ask for her mother again...

    She recognises me as Michael but does not know really who I am. I visit once or twice a week and normally she is pleased to see me although on the last visit she was somewhat violent and angry... No particular reason - just a phase she is going through I think. Monique is far more 'insane' than I have ever seen her but then there are bad days and better days..... I think time stands still for her - lonely in crowded place.... At 67 she is one of the youngest but excepting the half dozen or so who are incapeable of speaking she is probably one of the sickest.

    I find the visits very difficult - What to say? What to talk about? - we go for a walk across a big dune and look at the sea... we wander around the gardens then go back to her room and normally she falls asleep and I slip away. What she really wants but cannot have in the home, is 24/7 undivided attention of one person which is pretty well what she got from the carers and me when she was here. She hates it if I chat to other patients or staff when I visit her....

    My family have pretty well all cut off contact with me - my son has visited his mother once with his uncle - without telling me and our daughter has not yet found the time. Really do not understand their lack of manners and consideration at perhaps the most difficult time in my life but there's nothing I can do to change it - they are grown up adults. Some friends have been wonderful and supportive so I think I have been lucky.

    So that's it - I visit the AD forums now and then - without the help and understanding I got from all the folks I would not have made it - very grateful. I see newbies coming on line like I did and am just sad for them.. It is a confusing and unrelenting downhill struggle... Looking back I can see I was pretty stressed and tired... nothing much else to add...

    Michael
     
  2. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Hello Michael

    Thanks for the update on Monique. It does, as you say, sound like you got her into the home just in time. For her wellbeing as well as your own, what option did you have?

    Sorry to hear about your children. Even if they can't deal with what's happened to their mother, you'd think they'd spare you some time. But as a lot of us on here know, we can't choose our families and have to rely on friends/neighbours and TP for support. It's a bas**rd, isn't it?

    You've invested a lot of time and love in Monique's welfare. I hope you are making the most of the free time you now have - you deserve it.

    I miss your down to earth replies and witty asides on TP, so I hope you are keeping your pen sharp with your writing! Take care.

    xx
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,664
    Kent
    Thank you Michael. It`s always good to hear from old friends and even better to get an update.

    It`s very helpful to be told the right time comes when the right time is . It seems we all put off the steps we need to take until the last minute, then feel plagued with guilt in case we moved too quickly. Well thank you for putting us straight on that one.

    Visits are difficult, but you probably go as much for yourself as for Monique.

    I`m sorry your family have been so unsupportive, it seems you are not alone in that respect. It`s good you have friends.

    Take care

    Love xx
     
  4. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    I think that is what I shall be saying if and when I am in the same situation as you.

    It is good to have your update on Monique and obviously you most certainly did the right thing at the right time.

    I am currently organising a level access shower room downstairs - when the dreaded day of not coping with stairs comes into play. It looks like next April before a 'good' builder can do it - and one cannot help but wonder is that just too long to wait. Being pessimistic I know it could be just too late but then sometimes you just have to plough on.

    Its good to hear that Monique is doing well in the care home. I hope you are catching up on lost time doing your favourite hobby - ? sailing.

    So sorry about the family and lack of their support. Thank God for friends.

    Take care and keep in touch - it is good to hear from you.

    Jan
     
  5. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Hi Michael,

    Thanks for the update and for making us (well at least me) think about when is the right time for getting that extra help, whether it's the first visit to the doctors, getting in carers, getting medication, choosing a care home or whatever?

    I suppose it's part of the battle against this disease that we don't accept that the time has come to take that next step until there is no alternative or a crisis forces our hand. As you say you are now in a position to look back with hindsight, whereas so many of us who are not as far down the road are unable to see the wood for the trees. I hope we can benefit from your hindsight.

    I'm sorry about your family and hope you have some good friends. I was at a party on Saturday night and having a long chat with my friend's dad who I have known for nearly 30 years and who is a really lovely guy but who I only see a few times a year. He asked about my Dad - and an hour later probably regretted it but was sweet enough not to let on! :D He asked about all my Dad's 'good friends' :rolleyes: . As we all know if we learn one thing with this disease, it's who your real friends are.

    I didn't know you were a sailor. Sailing was my Dad's passion and he was never happier than on the sea on a close reach. I crewed him from Dartmouth to La Rochelle in the summer of 1990. Happy memories... :):( ... we sold the boat 12 months ago
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Micheal

    Good to hear from you again.

    You probably don't know, but I've taken the plunge too. John was admitted to an EMI unit six weeks ago, after a very severe UTI which caused severe neurological damage.

    Like you, I've had serious doubts that I'd jumped too soon, but the re-emergence of the infection this week has convinced me that he's in the best possible place.

    We always have doubts, though, don't we? Feel we should have done more, tried a bit longer?


    I hope you're as happy as you can be, in spite of the unhelpful family -- and don't so many of us know about that!

    Keep in touch, you're one of the members whose stories I followed with interest because I related to it so much.

    Love,
     
  7. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Michael

    It’s really good to hear from you again, I too have missed your posts and your humour.

    It was good to read that Monique has settled. Timing, well yes we all wonder about that one, I now feel I should have made the leap for mum earlier than I did, but she also is fine now, well settled, and doing better physically than when at home.

    So sorry to read that the ‘children’ are being thoughtless, I do think that has something to do with, ‘well dads fine isn’t he’, head in sand syndrome with fingers crossed at the same time no doubt while they get on with their busy lives.

    I hope that you are beginning to make a life for yourself now; by God you have earned the right to one.

    Please keep in touch; let us know how and what you are doing now.

    Love

    Cate xxx
     
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Michael
    I recognise that totally.

    Thanks for keeping us up to date. I know it is hard, harder than you can ever really let on, but hang on in there, and let us know how you both are from time to time.

    Best wishes
     
  9. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    When we have no other option

    Hello Michael,
    I am so sorry to hear about Monique but you did all you could and like us all more.
    At least you know she is in a Care Home receiving 24/7 care. Not that we never gave that but as my own husband was placed in a E.M.I. Unit in May, we still are Carers because we love that person.
    My husband is in the latter stages and does not remember me.
    I wish you all the best to the readjusting that there will be in your daily life.
    Take care..Best wishes. Christine
     
  10. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hi Michael,

    I don't think I know you from previous posts. I appreciate the terrible decision of when to ask for help, when to look for care homes, when to "do it", but in my case I didn't have a choice, it came on suddenly and that was it. I really don't envy those out there who had to take all those decisions, often alone. At first I thought my situation was hard, but actually it is obvious that it is hard for everyone.

    Monique seems to be in the best place. No it is not going to be 24/7 personal attention, but really is that manageable by anyone?

    I am sorry that your children don't visit much. It may not be that they are thoughtless, the most likely explanation is that they just don't understand. I know that I wouldn't have understood someone else's problems in this illness without experiencing it myself.

    I think that is most likely. They don't understand, and therefore don't see how traumatic it is for you, or the need for visits. Don't pressure them, keep them informed, and see what happens as they perhaps get older and have a few more life experiences to inform them.

    Wish I had friends or family to rely on. No family apart from our two daughters who don't live nearby. Friends? One who lost her mother as a child thinks I should be glad to have the opportunity to "look after" my mother and should "stop moaning". One who lost her mother 5 years ago to cancer (aged 91), but never a day that she had any mental problem. One whose mother is 85 and fit as a flea and keeps telling me what wonderful things her mother is doing, out to the cinema, theatre, quiz night, shopping, down to the local library researching the family tree, trying out new recipes, and down to the book club to discuss the latest BBC recommended novel. I just wish she would shut up about it!

    Fact is, folks, there are really only us on this website (and people who would benefit from joining us if they could), who know what it is like. How can we rejoice at having a mother who doesn't know whether it is night or day, is distressed at hearing strange voices, just because she is alive? How can we relate to that fit 85 year old woman, when our mum or wife or aunt or uncle is incapable of picking up a newspaper, never mind a book.

    That's what make this website so special. Real people going through real difficulties that those who don't experience them have not got a clue about. Not their fault, but they haven't got a clue.

    And neither would I have had a year ago.

    Thank goodness for this site. You have all been so helpful to me, I hope I have repaid some of that, but it isn't about repaying, it's about getting help for yourself.

    Love to everyone and thanks

    Margaret
     
  11. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Dear Michael,

    It's pleasing to read that Monique has improved some and is getting enjoyment
    from the singing painting and drawing groups. It's especially pleasing to read she
    is being well cared for.

    My mum is always asking for her mum also, just a place in their memory where
    they felt completely safe, I guess.

    I am sorry for you that your kids don't keep in touch with their mother it would be hard for you to fathom.

    I seen it written once that, God gave us relatives so we could get to choose our friends. Best Wishes Taffy.
     

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