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  1. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,529
    Ireland
    I've always admired those who could keep their loved ones at home - while knowing that it's just different circumstances that make it possible, because everyone's lives are different, everyone's dementia is different. There was no option for me but a nursing home for William. And I could see that he was much more secure and felt safer there, and he thrived in there. Yet I felt very guilty about not having him at home. Not taking care of him myself. Even though I couldn't - and it had gotten too dangerous for me to keep trying. I don't know what it is in our make-up that no matter what, we will feel guilty - but I suspect it's because we couldn't "kiss it and make it better". We couldn't nurse them back to health. No matter how much we did, how much we cared, how many appointments we took them to, how many different medications we tried, the disease progressed - in our heads we knew it would. Of course we knew. But deep deep down, I suspect, at least in my case, that that's why there's the niggling suspicion that if only I had done something else - if I had found another way - if, if, if. But I know of course, I know, that "if" nothing. The outcome would have been the same. And I imagine that you are right bemused - no matter what we do, no matter how or where we care for our loved ones, we will feel guilty. It's just how we are.

    I tell you something else I suspect. :mad: I suspect that the major battles with officials that we've all had to go through, over and over and over, to get meager pittances of support handed out, has contributed to our feelings of guilt. We've had to go so often, with our begging bowls, and face the outraged looks and indrawn hissing of breath as we ask for something, being made to feel like we are nuisances, clogging up their files, and over-working them. If only we had just gone away, they wouldn't have so much to do, and such shortages! When we have had to go again and again, fighting for each drip of support - we can end up feeling a bit guilty about it. Because when William had died, I looked back over the last year or two of his life, and I thought, "Seriously? All that battling, and now it's done?"
     
  2. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    And that's it in a nutshell, isn't it. I always say that I did my best, and it may have been better than some, and worse than others, but it was all I had. I had John at home for over 11 years from when he was diagnosed with AD, though he had shown signs for a couple of years before that, and within 6/7 months he died.

    Some people may only display challenging behaviour for a few years, but it doesn't make the journey any easier for the people it affects. And the grief we all feel is no different. An empty chair is an empty chair, whether it was last occupied yesterday, or years previously, and the funerals for our loved ones are no less painful whether they lived at home or in a Home. xxx
     
  3. rajahh

    rajahh Registered User

    Aug 29, 2008
    2,794
    Hertfordshire
    Ros, we all begin grieving with the first suspicion, the first diagnosis. We continue grieving through each loss of function, .

    To the outsde world thibgs may seem normal, but we all know our old normal has disappeared.

    I always called it the long goodbye and I find goodbyes very emotional and draining. So most of us have had years f grieving.

    We do grieve in different ways but it is always grieving.
     
  4. bemused1

    bemused1 Registered User

    Mar 4, 2012
    3,402
    We all have the same experience of grief in different forms. But the point i was making is that for all those who feel they missed out by not having loved ones at home, there is no difference. You may have the body but you dont have the person. Does that make it better, i dont know. From my point of view it didnt.

    I also think you are right lady a. Although we didnt have to fight for what ron needed i was completely on my own. To be honest every time i read the words'you are lucky to be self funding' whether addressed to me or others I think, just walk a mile in my shoes and then think again.
     
  5. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,529
    Ireland
    I was stopped in my tracks in town today at the sight of these stunning hand blown (suppose that should be mouth blown, really!) very delicate, glass bubbles, hanging by pretty ribbons in a shop window. I thought they were just decor- not for sale - but went in to ask about them, and had a lovely long chat with the owner. Turns out she too is a widow, for a few years now. She said that's why she opened the shop - otherwise, she'd never bother getting dressed or going outside! To be honest, we both really enjoyed the chat, and she asked me to drop in for a chat again. "friends and family are fine " she said " but after a while you can see in their faces that they think you should be putting it behind you, moving on, getting over it. And of course, you move on, because what else can you do. But nothing is ever the same, so in this, you can't really get over it, can you? " And she's right - and we giggled a bit about the advantages of not having someone else to consider at times, but without your "other half " you will never be as you were, will you?
     
  6. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,529
    Ireland
    Forgot to show you my glass "balloon "- yes, she had them in stock, and I bought myself a present, they just bring a smile to my face!
     

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  7. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,493
    Female
    Near Southampton
    #267 Saffie, Jul 13, 2016
    Last edited: Jul 14, 2016
    Apologies. Unhelpful post so deleted. x
     
  8. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Goodness, have people said that? :eek: Though why am I asking, when a similar thing was asked of me - not on TP, but by people I know. I chose to pay £9 an hour, for 4 hours, each day except Sunday (nowhere was open), at a Day Centre, because that was what they charged, for someone at John's level of AD, and it meant I could take him, come home and sleep for 3 and a half hours, and then fetch him.

    They called him a Day Opportunities Client, and I was originally under the impression he'd have 1:1 care. Not a chance. Sure, someone would take him to the toilet, when required, and he didn't know the exit code on the door, so couldn't go AWOL, but whenever I went up unexpectedly, say he'd gone out without a jumper, and it had turned cold, he was either asleep in a chair, or sitting at a table with a group of others colouring in.

    Not that he could do much else, but those crayons worked out very expensive! I also had to pay for his lunch, but I was told beverages would be free now, and included in the £36. ;)

    The number of people who did rapid calculations and then said "you're lucky you can afford £200 a week". :mad: I haven't had a holiday for about 12 years, my savings became very depleted - but I could sleep for a few hours, uninterrupted.

    I smoke and the number of people who ask me how much a packet of fags cost, and how many I smoke a day has annoyed me so much, so I now say "when you offer to pay for them, I'll tell you".
     
  9. bemused1

    bemused1 Registered User

    Mar 4, 2012
    3,402
    It's something I heard a lot Scarlett, from 'professionals' of all kinds and also yes it has been said on tp. I really should be leaving such things behind, maybe something 5o do with putting my finances in order!
     
  10. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,282
    Female
    near Folkestone
    Bemused you inbox is full so can't message you xxxx


    Sent from my iPhone using Talking Point
     
  11. bemused1

    bemused1 Registered User

    Mar 4, 2012
    3,402
    Done it chick.
     
  12. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,517
    Female
    England
    #272 jaymor, Jul 14, 2016
    Last edited: Jul 14, 2016
    Change of plan for holiday bemused so will be around for the start of the Widow's weekly thread. Somehow our dates have changed from Saturday to Monday.
     
  13. bemused1

    bemused1 Registered User

    Mar 4, 2012
    3,402
    Ok race you for it then
     
  14. bemused1

    bemused1 Registered User

    Mar 4, 2012
    3,402
    The time has come to get the ceiling hoist removed. It has no good memories at all and does me no good at all lookibg at it every time i am in the living room
    I have tried every avenue i can think of and advice from others in the know to give it away. Have just phoned the local childrens hospice and they may be able to use it .
    I have to pay for it to be removed. If i were to sell privately which is way out of my comfort zone , the chances are i would still have to pay for this.
    All of which kind of gobsmacked me. BUT if ihadnt bought this and now have to pay to have it removed, it would have been two years in a care home or a totally bedbound husband requiring two carers four times a day. At our expense No contest is there.
    So i am saying to myself, stop whinging woman and get it done.
     
  15. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,282
    Female
    near Folkestone
    Gosh bemused that's bad having to pay for the removal . Aren't there any hospices who might like them or CH? How has your day been so far? Xxxxxx


    Sent from my iPhone using Talking Point
     
  16. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,726
    Female
    Dundee
    I had the same with our stairlift when we moved. I had to pay almost £300 to have it taken out.
     
  17. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,664
    North West
    As a matter of interest, Izzy, what happened to it after it was removed?
     
  18. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,282
    Female
    near Folkestone
    That's really terrible Izzy x


    Sent from my iPhone using Talking Point
     
  19. bemused1

    bemused1 Registered User

    Mar 4, 2012
    3,402
    #279 bemused1, Jul 18, 2016
    Last edited: Jul 18, 2016
    Yes its about that izzy. Im hoping the local childrens hospice will take it chick. But i still have to pay for it tobe removed. Ive got my head round that but it seems ridiculous to scrap it when i feel sure there are people who need them. Childrens hospice is going to get back to me. One hospice turned it down.
    Day ok but hot hot hot
    Just as a point of interest stanley, unless charities will take equipment , which is up to you to arrange, there is no real way of reusing. Unless you are in tune with internet selling there isnt a way of disposing of it other than donating and hopi g someone will take it.
     
  20. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,664
    North West
    Yes, it's difficult. Ours has only been used twice (apart from testing), once to get Sue up the stairs so that we could get some peace while the bathroom was being installed downstairs and once to get her down again. I can't see that we will ever take her upstairs again. I'm thinking that maybe the firm that sold it (already refurbished) would come and remove it, maybe for free if it can be sold again. But, of course, I've done nothing about it.:(
     
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