the good, the bad and the ugly

Discussion in 'ARCHIVE FORUM: Support discussions' started by Michael E, Jan 27, 2007.

  1. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    The good....Because I am now almost certain that nobody in my immediate family - either of my children or my wife's brother are going to come here and stay for a week with Monique, this year, whilst I have a week off - respite - I have been looking for other solutions. The standard of French Care Homes, Old age homes in fantastic! Like smart 3 star hotel and the staff all have smiles on their faces and appear kind and caring... Went to one yesterday belonging to a big group who own 80 care homes throughout France - reasonably affordable...

    The bad.... Monique is 'only' 67, a few days ago... The inmates of the 'old age' section with a few 'mild' Alzheimer's patients in their 80,s are mainly have an average age of 79... Quite a lively bunch - reading, sewing, chatting, not a TV in site, in charming surroundings. Individual rooms like hotel bedrooms except the beds adjust in height... The problems there is two fold I think.. Monique would be aware they are 'older' I think... but the Directrice said she could try to pair her up with a youngerish one... BUT Monique gets lost in the house - cannot find her way around it. At night she needs somebody with her 24/7 or she panics, getting her to bed and to sleep at night is a very long drawn out process requiring some considerable patience... She can do nothing to entertain herself - watch tv, read, write and needs constant reassurance. This section of the home (98 inmates) is really set up for old people who mainly have not lost their marbles but are just 'old' and want to live 'comfortably' or have support..

    The Ugly.... The Directrice was concerned that the main area, was possibly not staffed sufficiently, to look after Monique's needs and then took me to visit the 'secure' Alzheimer's section. So they cannot run away, there are coded security locks on the doors, it is staffed on what appears to be a 2 carers to 1 patient, biases and is of the same high standard... The problem is the inmates are so ugly, so old so totally out of it... A geriatric version of One Flew Over the Cuckoo's Nest! The Directrice seemed to know the name of each of the 19 inmates and paid a little attention to almost all. respectful and friendly but they are all so old and so ugly and so awfully totally bananas... Monique is still relatively young, she can laugh at things, smile at things and has some awareness of what's going on around her... I just couldn't put her in a place like that even for a week.

    Not sure why I am writing this - but found it a very difficult experience yesterday.

    I have got plan b c and d but....

    Michael
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    #2 Amy, Jan 27, 2007
    Last edited: Jan 27, 2007
    Michael,
    I do feel for you - when mum was at Moniques stage we looked at day care, and abandoned it for just the reasons that you are saying.
    Would it be possible to pay for carers to look after Monique at home whilst you have a holiday?

    You will probably find that some are not as old as you thought, their brains and bodies just ravaged by dementia. They will be someone's beloved wife, husband, mother, brother, father, friend - a shock though when you are forced to look into the face of advanced dementia for the first time - and scarey, as that is what the future may hold for the person that you love.

    Sounds to me as though you and Monique are not at the right time for plan 'a', better move on to b,c, and d.
    Love Helen
     
  3. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi Michael
    So sorry to hear of your experience yesterday and very sorry to hear your wife's brother especially cannot help you by looking after Monique......I seem to remember he has not been particularly supportive in the past........
    I understand your feelings......I took my daughter( she asked me to take her) to have a good look round the NH where mum will go after hospital......For me it was reassuring because I know mum will fit in well.......but it scared the life out of my daughter to see the appearance of many of the residents( she still shared my view that it is a lovely home).....
    I often look at my mum and dads wedding photos and mums army photos to remind me of how she once looked .....she was so pretty.......
    I hope you have more success with your other plans
    love Wendy x
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,596
    Kent
    Hi Michael, I remember when my mother went into an EMI unit.
    I agree about `the ugly`, they all seemed to look the same. It was a dreadful shock. After a while, they didn`t look so ugly, I began to see individuals and saw them as wives, husbands, parents, who had ended up in a situation you wouldn`t wish on your worst enemy. But my mother at the time was late 70`s.
    There was one young man there who was 42. He was isolated by his Alzheimers and isolated by his age. I understand how you must feel about Monique.
    I hope you find a more suitable solution and manage to get your week`s break. Love Sylvia x
     
  5. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Michael

    You're feeling exactly the same as I did last week when I did my trawl of care home, considering respite.

    John needs 24 hour attention, but is not as sick as the people I saw. On the other hand, he wouldn't get the 24 hour, one to one attention he gets from me, so would very likely become incontinent as he wouldn't be able to find the toilet.

    At one of the homes, as soon as I mentioned AD, they said he'd have to go into the secure section -- he's not ready for that.

    But like you I'm in dire need of a break.

    It's so difficult isn't it? I don't think we're ready either, but I've got to do something.

    Let us know how you get on, I'll be interested in plans b, c, and d.
     
  6. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    Skye hi,

    I have been doing some calculations on MY life expectancy (almost 65 say 25 years max then I think I would rather exit with my dignity but take a rain check on that!) and relating it to my total financial resources and the fact that I really do not intend to leave anything in the pot for when I go. Happy to be buried in a cardboard box in a rubbish tip!

    Plan B. Wave a very big stick at the close relations - see my post under Registering EPA and Notification .... they all have a choice ----

    Plan C: offer money to some more distant but basically nice relatives - do not expect favours but Monique would be much happier at home and they might want the dosh.

    Plan D: I can have carers in for 7 days for approximately £800 on top of what I am paying at the moment....

    C & particularly D need some serious money - There are systems of taking money for life in exchange for deeding your house to a 'commercial organisation'... I am really lucky that my income is derived from some London property - I could either sell it or make it over and greatly increase my immediate income... Be totally independent of family and just spend the lot over the next few years - decades??? slightly doubt that ... and get the best quality of life for Monique and for me.... I mean you can't take it with you and in our excellent society if we did run out of money the state would house and feed us... Seems like a possible deal??? No? I am more and more thinking that is the way forward rather than leave a nice little nest egg to ones 'nearest and dearest'

    Am now trying to think of Plan E but not going well - if you have one let me know Skye....

    love

    Michael
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Yep, I think it was once called character.

    But we live in a world where things are not only airbrushed out in photographs, but people go to great lengths to erase any sign of time having passed.

    The challenge is to get past first impressions, and that took me some time - visual and behavioural first impressions. These folks no longer have the wherewithall to 'beautify' themselves, to make up, to recall if their teeth are in or not, etc.

    In my opinion, the challenge is greater where early onset dementia is concerned because the patient may WELL be 30 years younger than the more characterful ones in the homes.

    Tell you what though - I'd rather see and hear any of these folks than any one of the dire trio in Big Brother! They make more sense then the trio and generally have a more complete vocabulary.... and certainly better brainpower, even with dementia.
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Bruce, sorry, didn't mean to be disrespectful. It's just that it's such a shock to the system, seeing people at much later stages, knowing that we're not at that stage yet, knowing that stage will come, needing a break but afraid to make the decision....... I'm not normally indecisive, but this!!!!!!!!!!!

    You're right, it's even worse in cases of early onset, but John's variety of AD means that he's fit and strong, and I just can't visualise him in a NH.

    I agree. I've never watched the programme, but the snippets that appeared on the news were the ugliest thing I've see for a long time.

    Love
     
  9. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Micheal

    I guess my life-expectancy is similar (69 but come from a long-living family), and I too would loke to have enough money left to have a reasonable quality of life (and death)

    I don't think plans b or c would work for me. I don't have help with toileting, washing, etc. My morning routine is:

    Shower, dress, go down and take dog out. Give dog breakfast.
    Back upstairs. Toilet John. Wipe bum. Shower John. Clean his teeth. Dress him.
    Back downstairs, breakfast for J. & me. Wash up. Shave J. Walk dog.
    THEN I get to sit down.

    I'm not complaining. It's the way I want it. But I don't think any of the relatives would cope with that -- or that John would let them!

    Plan d is a possibility, but I don't know how much help I could get. (Or whether J. would let strangers do it either).

    Plan e? Haven't got there yet. Would be grateful for any suggestions.

    Love,
     
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I didn't take it that way, so please don't worry!

    I was just the same at one time. I've had five years to meet and know a lot of these people, that's all, and I have learned just how good they are.

    Some folks, even close relatives never get there. At the latter stages of Jan being at home, and in fact the last time Jan went back to South Wales, I asked her eldest sister if we could use her spare bedroom overnight. "Can you stay at an hotel as I'd rather you didn't stay with me, because seeing Jan makes me feel ill" was her reply and the sad thing is that she was serious about it.
    :mad:
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,596
    Kent
    Dear Bruce, I have just read your last post re Jan`s sister`s comments and literally stared at the screen in shock.
    If I wrote how I felt, I would probably be barred from the site. I hope you had a good reply ready for her. Callous woman!!! Regards Sylvia
     
  12. Splat88

    Splat88 Registered User

    Jul 13, 2005
    176
    Essex
    The comments on the "ugly" appearance made me think. My mum was 83 when she died, 2 years younger than MIL is now, but she was so much "softer" somehow. Even though Mary is still fairly okay phsically, apart from the 3 second memory span, she seems so much more pinched and drawn than my mum did, is that the dementia one wonders, or genetics? My mum certainly never used creams and lotions to erase the years, it wasn't done in her day! ( She's only been dead 2 years!!)
     
  13. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    You do a lot more than me Hazel... I confess in the last 6-9 months I have gone for more and more 'help'. The French SS system pays for about half of it. Because I now go out so little I really do not spend so much so there are good sides to everything.

    I do the toileting bit, cooking and attention bit always found the washing and teeth difficult and accept the 'help' with that gratefully. I have a lot easier time than you do. I just find the constant need to be with Monique all day difficult. The entire 'housekeeping' scene was new to me and I take my hat (if I had one) off to women who keep a house going and do a full time job. Much harder than I ever imagined. I have it really easy compared to you - I should not grumble - one of the good things of this illness is there is always somebody worse off than you are!

    in admiration

    love

    Michael
     
  14. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    No verbal reply to her as she is Jan's sister and no matter what, in representing Jan's interests over everything, I could not say what I would otherwise have done.

    What I did do is to stick around.

    Not long after this incident, the torments of seeing Jan so badly compromised in health drove me to the brink, but I realised that, were I to do what I wanted to do, my estate would go to Jan, and, on her death, would go to her family, which en masse has ignored her plight.

    To ensure that not a penny would ever go in that direction, I have kept myself going, with help from my own family and friends, and latterly with massive help from Nina and her family.
     
  15. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Bruce,

    That is so brave of you, to let us know how low you were. You always come across as so strong and 'together'.

    Telling us that has given impetus to the rest of us who suffer from bouts of crippling depression.

    I have huge respect for you. You are lucky to have Nina, but she is lucky to have you.

    Love,
     
  16. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    During my working life ,not this one ,but the one I got paid for,I saw many many homes.
    I decided that I could not put Peg in a home,not even for respite.
    I am able through direct payments, and an angel personal assistant to leave Peg at home, with her living in and I go away.
    This costs more than respite in a home and I have been allowed 4 respite sessions instead of 6 next financial year.
    I have had two breaks so far and I am off 5th Feb for another five days and four nights.
    Can't wait
    Norman
     
  17. alex

    alex Registered User

    Apr 10, 2006
    1,665
    Hi Michael

    I think leaving anyone you love in any home or with strangers is always going to pull on the old heart strings and always a worry, but sometimes it can't be avoided, you need to have a break to enable you to cope.............whatever you decide, i'm sure it will be the right decision.

    Hope you get sorted soon, then you'll be able to look forward to your holiday!

    Love Alex x
     
  18. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Well said Hazel............

    When I read posts like yours Bruce and Michael I realise I fell completely apart way before mum got to the stage of Jan and Monique, which makes me feel very humble indeed, I truly dont know how you do it.........

    I have to say though, mum at 88 still looks fantastic...........I'm hoping its genetic!!:rolleyes: She has the most fantastic skin, hardly a wrinkle in sight, sadly since her AD has progressed, the light has gone out of her eyes, but thankfully she is still able to give me hell when I visit her at the NH:rolleyes:

    Michael I truly hope that you manage to sort out some respite care.............I would go with spend, spend, spend, you cannot take it with you...........so use it to make your life as good as you can.

    Bruce you are always an inspiration to me, thank you.

    Love
    Cate xx
     
  19. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    Norman hi,

    I think we are very alike in our thinking - I really do not think I can put Monique in a home whilst I take respite.... Its not that I find the other inhabitants ugly - they are just old, tired a bit beaten or trying to do their best to understand what the hell is going on.. BUT I am afraid Monique would!

    She would also think I had abandoned her to a 'cuckoo's nest'.

    I too can have 24 hour cover from La Rochelle Sante who provide the excellent carers who come in daily now... the charge for 24 hours cover for one week is around €1000 = about £750 !!! on top of what I am already paying... Ouch.. serious dosh but I think it is the way forward...

    must start doing the lottery!

    Michael
     
  20. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Michael,

    I have just implemented plan E! I've booked three nights next week at a super hotel in North Berwick for both of us. I thought last year when John became incontinent that hotels were out, but he's so much better, I'm going to risk it again. I'll take plenty of pads & kylie sheets.

    The hotel has a spa, so I can have lots of massages etc. I've booked an executive, sea view room. How's that for Spending Kids' Inheritance.

    I'm keeping my fingers crossed -- now I just need John to keep his legs crossed!

    Cate, I think John looks great too. He's only 73, but at AD#7 he's doing well. You can see why I don't think he's ready for NH
     

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