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[LadyA]

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. 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?"

 

[Scarlett123]

I just feel a need to say something here. I realise it was unusual to be able to keep Ron at home until the end of his life.
I have read many comments here about grieving when loved ones have to be placed in alternative homes. I have the utmost respect for people who made that decision and were not granted the privilege I was.
But the grieving is no less because you have the loved one in their own home. I grieved every day for the Ron I used to share my life with. There was no getting away from it for one single minute. I also suffered the same guilt, was it the best thing for him, might he have had a better quality of life elsewhere? Did I do the right thing.
Grieving and guilt are the same wherever your loved one is. If you think it would have made things any better to have been able to keep your loved one at home, believe me it wouldn't.

Every single one of us did the very best we could. We are all touched by dementia in our lives and we all know we will never be the same again. What ifs are a part of all our lives and somehow we have to move past them and make a life without ever losing our loved ones. Whether I will ever believe I did the right thing remains to be seen but I have to believe it otherwise dementia will take two lives. One is more than enough.

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

 

[rajahh]

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.

 

[bemused1]

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.

 

[LadyA]

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?

 

[LadyA]

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!

 

[Saffie]

Apologies. Unhelpful post so deleted. x

 

[Scarlett123]

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.

Goodness, have people said that? 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". 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".

 

[bemused1]

Goodness, have people said that? 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". 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".

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!

 

[chick1962]

Bemused you inbox is full so can't message you xxxx


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[bemused1]

Bemused you inbox is full so can't message you xxxx


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Done it chick.

 

[jaymor]

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.

 

[bemused1]

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.

Ok race you for it then

 

[bemused1]

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.

 

[chick1962]

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


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[Izzy]

I had the same with our stairlift when we moved. I had to pay almost £300 to have it taken out.

 

[stanleypj]

As a matter of interest, Izzy, what happened to it after it was removed?

 

[chick1962]

I had the same with our stairlift when we moved. I had to pay almost £300 to have it taken out.

That's really terrible Izzy x


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[bemused1]

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.

 

[stanleypj]

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.