still here cont....

[sdmhred]

Yes please don’t think you’ve given up @sunshine chrissy - you most definitely haven’t.

he is very poorly and needs carers who are able to sleep - which you were not having him up 21hours per day.

Is he still enjoying the music you said he loved? Would that distract him a teeny bit on ur visit? Could u encourage some dancing?

It must be so very hard 😢😢

Your son is such a star for dropping off his roll ups each morning!

 

[JaxG]

You have not 'given up', you are now giving him the help and care he so desperately needs. He is being cared for by experienced staff who understand his needs and can give him the support he now needs - it is too much for one person. It is still early days but I am sure he will settle, and meantime you must look after your own health. This is a terrible disease, but don't let it take your life too.

 

[DawnR]

I'm feeling so sad right now for him but I know there's no going back,my best friend and husband has been taken by this evil desease.💔

My heart is broken for you and everybody who has a loved one living with this horrible disease.
You know in your heart there’s no going back but that doesn’t make it hurt any less.

 

[leny connery]

Thank you so much for your reply,it made so much sense to me.Things have changed today,I had a call off our mental health nurse,she's been my absolute angel through all of this.She visited him last Friday in the carehome.She spoke to the manager and the staff,it's not the place for him,he's still not sleeping for more than 2/3 hours a night,he's unsettling the other residents with the constant pacing around all day long,she said the manager can't believe how I've coped for all this year on my own!!Must admit it made me feel less guilty and more like I've done all I can.She's looking into a home that specialises in the rare dementia,he has FTD,it's looking like he won't be coming home which is a relief but I think about him all day long,he's so confused and tormented,all he says is am I coming home today,I dread each visit😭

you have indeed done the best you could, and often we do not realize just how much we have to cope with and soldier on. i understand your sadness, and the dread hearing him asking to be taken home. I wonder , though, with dementia in all its forms, often the sufferers just repeat a phrase over and over again without really 'feeling' it, or understanding what is being said. For instance a person can say over and over again: 'help me, nurse, help me nurse' when there is really no help was needed. I used to work as carer for dementia sufferers, and even while I was doing caring for her needs , she kept saying it. So, maybe , just maybe, he just repeats the phrase...who knows.in any case, you said yourself, you have reached that point where you cannot do it any more. you have done your utmost best. big hugs

 

[sunshine chrissy]

you havent given up but have got a whole team to care for him. he might not be distressed but its hard to know. i think that you visit when you want to and how often you want to. he is safe and cared for. the carers go home at the end of the shift so he has a whole team including night staff that are awake and able to care for him at night as well. you couldnt have done any more.

❤️

My heart is broken for you and everybody who has a loved one living with this horrible disease.
You know in your heart there’s no going back but that doesn’t make it hurt any less.

❤️

you have indeed done the best you could, and often we do not realize just how much we have to cope with and soldier on. i understand your sadness, and the dread hearing him asking to be taken home. I wonder , though, with dementia in all its forms, often the sufferers just repeat a phrase over and over again without really 'feeling' it, or understanding what is being said. For instance a person can say over and over again: 'help me, nurse, help me nurse' when there is really no help was needed. I used to work as carer for dementia sufferers, and even while I was doing caring for her needs , she kept saying it. So, maybe , just maybe, he just repeats the phrase...who knows.in any case, you said yourself, you have reached that point where you cannot do it any more. you have done your utmost best. big hugs

Thank you❤️I'm visiting tomorrow,it's a week since I've been and I'm dreading it,I'm taking a family friend with me,I can't do it on my own,I know he's not settled yet,other family members have visited in the last week.I feel like I've abandoned him in a place full of strangers,he must be so confused if he even knows what that means!All I've longed for was some peace and relief from the nightmare this last few months,I've got it now and must admit I'm enjoying it but the underlying guilt and sadness is on my mind all day long🥲

 

[sdmhred]

Thinking of you tomorrow @sunshine chrissy

 

[sunshine chrissy]

Thinking of you tomorrow @sunshine chrissy

❤️

 

[Slipstitch]

How did it go Sunshine Chrissy? Like you it's almost four weeks now since my husband went into residential care. Even though I know we couldn't go on as we were, I'm frequently overwhelmed by sadness.

As the days go by I'm finding that the implications (and emotions) of this huge change that's happened to us are kind of drip-feeding themselves into my consciousness - processing it all looks as if it's going to happen inch by inch.

Today I'm feeling a sort of shock at the abruptness of the change - in the blink of an eye all the normal things that previously surrounded him (shops, ordinary people, buses, pubs, the garden, cafes, streets, his home, the car, me) have been removed from his life, probably forever. I'm finding that's a stark truth to think about.

We have to keep strong in the knowledge that in these horrible circumstances we are ALL of us simply doing the best we can against ghastly odds, with the best motives. As Violet Jane said - don't let dementia take both lives.

 

[sunshine chrissy]

How did it go Sunshine Chrissy? Like you it's almost four weeks now since my husband went into residential care. Even though I know we couldn't go on as we were, I'm frequently overwhelmed by sadness.

As the days go by I'm finding that the implications (and emotions) of this huge change that's happened to us are kind of drip-feeding themselves into my consciousness - processing it all looks as if it's going to happen inch by inch.

Today I'm feeling a sort of shock at the abruptness of the change - in the blink of an eye all the normal things that previously surrounded him (shops, ordinary people, buses, pubs, the garden, cafes, streets, his home, the car, me) have been removed from his life, probably forever. I'm finding that's a stark truth to think about.

How did it go Sunshine Chrissy? Like you it's almost four weeks now since my husband went into residential care. Even though I know we couldn't go on as we were, I'm frequently overwhelmed by sadness.

As the days go by I'm finding that the implications (and emotions) of this huge change that's happened to us are kind of drip-feeding themselves into my consciousness - processing it all looks as if it's going to happen inch by inch.

Today I'm feeling a sort of shock at the abruptness of the change - in the blink of an eye all the normal things that previously surrounded him (shops, ordinary people, buses, pubs, the garden, cafes, streets, his home, the car, me) have been removed from his life, probably forever. I'm finding that's a stark truth to think about.

We have to keep strong in the knowledge that in these horrible circumstances we are ALL of us simply doing the best we can against ghastly odds, with the best motives. As Violet Jane said - don't let dementia take both lives.

We have to keep strong in the knowledge that in these horrible circumstances we are ALL of us simply doing the best we can against ghastly odds, with the best motives. As Violet Jane said - don't let dementia take both lives.

It went as usual,take me home etc🥲Like you,now I'm on my own with the peace and quiet I longed for(which I am enjoying,can't lie) I'm reflecting on the life we had,a life we imagined when we retired,he's 8 years younger than me,62,he had years of work left,he used to say he couldn't wait to retire,we'd have money saved to do what the hell we wanted,all gone now including our savings wiped out having to pay all the bills for 3 years while we waited for the diagnosis.I'm trying hard not to think about what could have been this last few days,too much time on my hands,I need to give myself a pep talk👍

 

[JaxG]

It went as usual,take me home etc🥲Like you,now I'm on my own with the peace and quiet I longed for(which I am enjoying,can't lie) I'm reflecting on the life we had,a life we imagined when we retired,he's 8 years younger than me,62,he had years of work left,he used to say he couldn't wait to retire,we'd have money saved to do what the hell we wanted,all gone now including our savings wiped out having to pay all the bills for 3 years while we waited for the diagnosis.I'm trying hard not to think about what could have been this last few days,too much time on my hands,I need to give myself a pep talk👍

My heart breaks for you both, and so young. The disease robs you of so much - the person, your futures, finances, social lives - everything. No one can understand if they haven't been through it.

 

[sunshine chrissy]

My heart breaks for you both, and so young. The disease robs you of so much - the person, your futures, finances, social lives - everything. No one can understand if they haven't been through it.

👍