Just caught up on this thread Hazel and am so sorry that John is so poorly and that you are going through such a rough time
Love to you both
Libs
Love to you both
Libs
I can't do this............
- Thread starter Skye
- Start date
Thanks for the support, everyone, it's so helpful for me.
When I went in this afternoon, John was lying on top of the bed with the sides up. As soon as he saw me he was coming home, and proceded to slide down the bed and try to climb over the foot. I couldn't stop him, and had to ring for nurses to get him back up the bed. He was quite aggressive with them.
I sat and held his hand, and he gradually calmed down. One time when I told him I loved him he replied 'I too .... very'. He clung to my hand as if he'd never let go.
So how on earth do I decide? At the beginning, when he was so determined to have his own way, I knew I'd never cope.
Then, how can I not, when he's so lovely?
I know none of you can tell me, and I think I'll have to decide tomorrow when I have my meeting. And it's driving me crazy.
Love,
When I went in this afternoon, John was lying on top of the bed with the sides up. As soon as he saw me he was coming home, and proceded to slide down the bed and try to climb over the foot. I couldn't stop him, and had to ring for nurses to get him back up the bed. He was quite aggressive with them.
I sat and held his hand, and he gradually calmed down. One time when I told him I loved him he replied 'I too .... very'. He clung to my hand as if he'd never let go.
So how on earth do I decide? At the beginning, when he was so determined to have his own way, I knew I'd never cope.
Then, how can I not, when he's so lovely?
I know none of you can tell me, and I think I'll have to decide tomorrow when I have my meeting. And it's driving me crazy.
Love,
Hazel
What a truly terrible situation to be in - I hope you have the strength to do what is right for both of you
Libs x
What a truly terrible situation to be in - I hope you have the strength to do what is right for both of you
Libs x
Oh dear Skye - just do not know what to say but I do understand the 'driving crazy' bit.
It seems to me if we have not already reached your stage then we have it to face - so we have been through it or are about to!! - God can I handle it!!??
I KNOW YOU CAN.
Thinking about you so much. Very best wishes Jan
Hazel. O.K. , of course, non of us can tell you.
However there is something we can do. We can support you in whatever ecision you make.
You will have thought long and hard, and it will be the 'right' decision for you and John. That's where friends on TP come in.
Whatever your decision we will back you. No question. I know you will make the right one.
However there is something we can do. We can support you in whatever ecision you make.
You will have thought long and hard, and it will be the 'right' decision for you and John. That's where friends on TP come in.
Whatever your decision we will back you. No question. I know you will make the right one.
Hazel
My thoughts are with you, how awful all of this is for you and John.
You are bound to be driven crazy and who knows what you are going through, only you. We can only imagine what we might do, in your position, but ultimatly ( I feel so sorry for you on this one) it is up to you.
Whatever happens tomorrow, you will have our support.
Love Janetruth x
My thoughts are with you, how awful all of this is for you and John.
You are bound to be driven crazy and who knows what you are going through, only you. We can only imagine what we might do, in your position, but ultimatly ( I feel so sorry for you on this one) it is up to you.
Whatever happens tomorrow, you will have our support.
Love Janetruth x
Hazel,
I wish I had some words of wisdom to add to what others have said.
I suppose the only thing that I can offer is to say that either way, home with a care package or into a home with nursing care, neither decision is irrevocable.
If you brought John home with a care package that you thought was realistic and workable (given how reliable third parties can be) and it didn't work out, then you would know that you gave it your best shot (for the state of John's health at the moment) and that 24/7 care was required.
If you felt that John's health was still to precarious for you to have him home with confidence, you could opt for a nursing home and then see if, perhaps with skilled care in a setting attuned to people with dementia, his health might actually improve to such a level that he could return home. (In California, we used to have what were called "convalescent homes" where people could recover following events that put them in hospital.)
Whatever you decide to do in the coming days, we all know that you have John's best interests at heart.
Take care,
Sandy
I wish I had some words of wisdom to add to what others have said.
I suppose the only thing that I can offer is to say that either way, home with a care package or into a home with nursing care, neither decision is irrevocable.
If you brought John home with a care package that you thought was realistic and workable (given how reliable third parties can be) and it didn't work out, then you would know that you gave it your best shot (for the state of John's health at the moment) and that 24/7 care was required.
If you felt that John's health was still to precarious for you to have him home with confidence, you could opt for a nursing home and then see if, perhaps with skilled care in a setting attuned to people with dementia, his health might actually improve to such a level that he could return home. (In California, we used to have what were called "convalescent homes" where people could recover following events that put them in hospital.)
Whatever you decide to do in the coming days, we all know that you have John's best interests at heart.
Take care,
Sandy
similar situation
Skye
So sorry that you and john are having such a painful time,I was told my husband needed full EMI nursing, but i was determined to bring him home, they eventually agreed and trev came home with a huge care packagein place, help 6 times a day ,which sounds great in theory, but trev was so resistant to them helping him. ( who can blame him)that i cancelled it all and we manage , just. but he does get agressive which is so not him, he tells me he loves me 20 times a day this from a man who has virtually no speech. He is fine in the morning but as day goes on he changes, you would not believe he was the same man. Just wanted to worn you about the care package, the ladies where lovely and understanding, it will be more will John accept there help, just thought my experience of situation might help.
Love to to both Pam & Trev
Skye
So sorry that you and john are having such a painful time,I was told my husband needed full EMI nursing, but i was determined to bring him home, they eventually agreed and trev came home with a huge care packagein place, help 6 times a day ,which sounds great in theory, but trev was so resistant to them helping him. ( who can blame him)that i cancelled it all and we manage , just. but he does get agressive which is so not him, he tells me he loves me 20 times a day this from a man who has virtually no speech. He is fine in the morning but as day goes on he changes, you would not believe he was the same man. Just wanted to worn you about the care package, the ladies where lovely and understanding, it will be more will John accept there help, just thought my experience of situation might help.
Love to to both Pam & Trev
Thanks for the messages, everyone. I know you'll support me, whatever happens this afternoon, and I value that so much.
Pam, your situation sounds so much like ours. The best care package here is four times a day, but I think John also would also resist them. He gets quite aggressive when the nurses try to do anything for him.
But the biggest problem is the loss of balance. He's very determined, and very strong, and when he decides to move, he tries to stand, but slides out of the chair or bed onto the floor, and I can't get him up. And because of the lack of language, he doesn't understand when I tell him how to help me.
But then they tell you they love you, and that breaks your heart.
Love,
Pam, your situation sounds so much like ours. The best care package here is four times a day, but I think John also would also resist them. He gets quite aggressive when the nurses try to do anything for him.
But the biggest problem is the loss of balance. He's very determined, and very strong, and when he decides to move, he tries to stand, but slides out of the chair or bed onto the floor, and I can't get him up. And because of the lack of language, he doesn't understand when I tell him how to help me.
But then they tell you they love you, and that breaks your heart.
Love,
HI Hazel
My thoughts go out to you and John this afternoon. No one can make this decision for you but remember that it will not be set in stone and things can be reversed if they are not right.
You will know what you need to do and you will feel it in your heart. We will support you.
Love
Mameeskye
My thoughts go out to you and John this afternoon. No one can make this decision for you but remember that it will not be set in stone and things can be reversed if they are not right.
You will know what you need to do and you will feel it in your heart. We will support you.
Love
Mameeskye
OK, the decision's made (well almost!).
Had my interview with the Psychiatric Liaison Nurse -- he's called Jim and he's gorgeous! He convinced me that I wouldn't cope, and it wouldn't be in John's interest (or mine) to try, and fail. The doctor said I could have until Monday to make up my mind.
Then I went back to the two homes I'd been considering, the older one John was going to for respite, and the new one that I liked. The older one hasn't a bed available at the moment, and I didn't like the look of it this afternoon, so I was quite glad. Also, I'd asked for a brochure on my first visit, and they'd promised to send me one. I hadn't received it, so I asked again, and they still didn't have one available. Not good PR.
The new one has a long waiting list for residential, but have a vacancy in the EMI unit. Came home and rang SW. He's backed my decision, and the free personal care is OK, but to get the extra nursing funding for the EMI unit John will have to be assessed, and it will have to go before the funding panel. As the assessment will be done by Jim, there shouldn't be any problem there, and SW thinks the panel will go along with his assessment. The hospital will have to keep John until this is all agreed.
So! Decision made (I think
). Everything's now in the hands of my SW, whom I trust. So why do I feel so miserable?
Had my interview with the Psychiatric Liaison Nurse -- he's called Jim and he's gorgeous! He convinced me that I wouldn't cope, and it wouldn't be in John's interest (or mine) to try, and fail. The doctor said I could have until Monday to make up my mind.
Then I went back to the two homes I'd been considering, the older one John was going to for respite, and the new one that I liked. The older one hasn't a bed available at the moment, and I didn't like the look of it this afternoon, so I was quite glad. Also, I'd asked for a brochure on my first visit, and they'd promised to send me one. I hadn't received it, so I asked again, and they still didn't have one available. Not good PR.
The new one has a long waiting list for residential, but have a vacancy in the EMI unit. Came home and rang SW. He's backed my decision, and the free personal care is OK, but to get the extra nursing funding for the EMI unit John will have to be assessed, and it will have to go before the funding panel. As the assessment will be done by Jim, there shouldn't be any problem there, and SW thinks the panel will go along with his assessment. The hospital will have to keep John until this is all agreed.
So! Decision made (I think
). Everything's now in the hands of my SW, whom I trust. So why do I feel so miserable?Skye said:So! Decision made (I think
Because dear Hazel, although it may be the right decision it`s still a dreadful decision to make.
However much you knew it was on the cards, when it actually arrives it is frightening.
I hope you have the strength to see it through.
Love xx
I would say because its an ending of how life use to be for you both , change is scary but with ever ending they a new beginning , the love still they just that your further apart your be looking after John emotional well being rather then his physical side xx
Dear Hazel
How could you not be miserable after making such a decision? It may be the right one, the only one, for you and John, but I can't imagine any circumstances when it would be anything other than upsetting.
How could you not be miserable after making such a decision? It may be the right one, the only one, for you and John, but I can't imagine any circumstances when it would be anything other than upsetting.
Hi Hazel
How could you not be sad. It is yet another ending of yet another chapter and it hurts like anything.
Let yourself grieve for now, for that is what it is and you will be able to go forward and be stronger to carry on this journey. Try to think of the positives and not the negatives. I know, it is easier said than done.
(((((hugs))))))
Love
Mameeskye
How could you not be sad. It is yet another ending of yet another chapter and it hurts like anything.
Let yourself grieve for now, for that is what it is and you will be able to go forward and be stronger to carry on this journey. Try to think of the positives and not the negatives. I know, it is easier said than done.
(((((hugs))))))
Love
Mameeskye
Dearest Hazel, never said it would be easy.
Did say I would support your decision, and I do. Please don't be hard on yourself.
Thinking of you, love
Did say I would support your decision, and I do. Please don't be hard on yourself.
Thinking of you, love
Hazel, of course you're sad. Just because a decision is right doesn't make it less sad.
I'm thinking and praying for you both.
{{{HUGS}}}
I'm thinking and praying for you both.
{{{HUGS}}}
Dear Hazel,
You are just giving a glimpse of the future and hope I will be as strong and able to cope as you.
My heart goes out to you and John
You are just giving a glimpse of the future and hope I will be as strong and able to cope as you.
My heart goes out to you and John
It is an awful desicion to make Hazel, and I think it must be so much worse when it's a partner/husband/wife.
We knew it was the right thing for Mum when dad died, and hopefully, when you've had chance to take stock, you'll know it's been the best thing to do for both of you.
Take care
Libs
We knew it was the right thing for Mum when dad died, and hopefully, when you've had chance to take stock, you'll know it's been the best thing to do for both of you.
Take care
Libs
