still here cont....

[canary]

I'm really struggling this week,he's been there 2 weeks tomorrow and the visits are no easier,he doesn't seem to have settled at all yet,

Im sorry you are finding it so tough, but it takes a while to settle - at least a couple of months. My mum spent the first 6 weeks "packing to go home" but she settled really well eventually.

Honestly, if you are feeling that visiting is not doing either of you any good then it is perfectly OK not to go.

Have you asked the staff what he is like when you are not there? Often, seeing their relative is the trigger to remind them of home and the rest of the time they are OK.

Just hang in there. You know you cant go back, but this knowledge hasnt yet gone from your heart to your heart. It will take time for you to adjust too.

 

[Slipstitch]

Thinking of you Sunshine Chrissie.

I think Canary's idea of asking what he's like when you're not there is a good one. I visited today (two and half weeks in) and there was really no sense of connection at all from my husband. But they showed me photos taken during a pumpkin carving activity, something it would have been utterly ridiculous to think of him doing 'before'. But there he was, not exactly participating, but showing an interest and smiling. Who knew?

I'm still very tearful much of the time, feeling bereaved, and I guess I will be for quite a while, but I'm just just just beginning to see that inch by inch it's going to get easier to let go. He's gone beyond my care and is in the hands of others - it's a different life now for both of us.

I think you and I will get there in the end, Sunshine Chrissie - keep going, and as Violet Jane said, dementia's robbed one life, don't let it take two.

Good luck tomorrow.

 

[sunshine chrissy]

Thinking of you Sunshine Chrissie.

I think Canary's idea of asking what he's like when you're not there is a good one. I visited today (two and half weeks in) and there was really no sense of connection at all from my husband. But they showed me photos taken during a pumpkin carving activity, something it would have been utterly ridiculous to think of him doing 'before'. But there he was, not exactly participating, but showing an interest and smiling. Who knew?

I'm still very tearful much of the time, feeling bereaved, and I guess I will be for quite a while, but I'm just just just beginning to see that inch by inch it's going to get easier to let go. He's gone beyond my care and is in the hands of others - it's a different life now for both of us.

I think you and I will get there in the end, Sunshine Chrissie - keep going, and as Violet Jane said, dementia's robbed one life, don't let it take two.

Good luck tomorrow.

Well I went yesterday with my best friend who's known us both for decades,it was awful,all he kept saying was "have you come to take me home,I want to go home,why can't I go home,I don't like it here"over and over on repeat😭I asked the manager how he's been,she said he's still walking around all day long,still not sleeping much,won't join in with any activities or interact with anyone,it's 2 weeks in now and I can't stop thinking about him pacing up and down all day.Is he thinking we've abandoned him,I really don't know but this is how he was at home,pacing,not sleeping,I can't go back to that I really can't,I feel relieved and back to my old self again but that fills me full of sadness and guilt.I know that it's beyond me to care for him on my own now,he's in a better place but this is 6 weeks respite and what if they decide he should come home after this?I can't face that😩

 

[sunshine chrissy]

Thinking of you Sunshine Chrissie.

I think Canary's idea of asking what he's like when you're not there is a good one. I visited today (two and half weeks in) and there was really no sense of connection at all from my husband. But they showed me photos taken during a pumpkin carving activity, something it would have been utterly ridiculous to think of him doing 'before'. But there he was, not exactly participating, but showing an interest and smiling. Who knew?

I'm still very tearful much of the time, feeling bereaved, and I guess I will be for quite a while, but I'm just just just beginning to see that inch by inch it's going to get easier to let go. He's gone beyond my care and is in the hands of others - it's a different life now for both of us.

I think you and I will get there in the end, Sunshine Chrissie - keep going, and as Violet Jane said, dementia's robbed one life, don't let it take two.

Good luck tomorrow.

❤️

 

[Violet Jane]

You've said very clearly that you can't look after your husband at home any more. If you ever have any doubts about this then reread your old posts when you had reached breaking point. I actually think that if you tried again it could be the death of you as the toll on you was enormous. The pacing and wakefulness happened at home and so they are not connected to him being in the care home.

I'm wondering whether it would be better if you and the family stopped visiting for a while as it just seems to upset everyone and doesn't seem to achieve anything.

Your husband is never going to improve. No medication or strategies have worked for him and I think that it does come down to you making a choice about whether or not you are prepared to let his illness break you, which is what will happen if he returns home. Sadly, dementia is taking his life. Don't let it take your life too.

 

[scotlass]

when my mum went into the care home...she would cry and have me crying too when I left,,,,so I used to say that I had a few things to get at the shops...and ,,,is there anything you want me to get for you?? It was the easiest way to leave without tears....

 

[Kath610]

Well I went yesterday with my best friend who's known us both for decades,it was awful,all he kept saying was "have you come to take me home,I want to go home,why can't I go home,I don't like it here"over and over on repeat😭I asked the manager how he's been,she said he's still walking around all day long,still not sleeping much,won't join in with any activities or interact with anyone,it's 2 weeks in now and I can't stop thinking about him pacing up and down all day.Is he thinking we've abandoned him,I really don't know but this is how he was at home,pacing,not sleeping,I can't go back to that I really can't,I feel relieved and back to my old self again but that fills me full of sadness and guilt.I know that it's beyond me to care for him on my own now,he's in a better place but this is 6 weeks respite and what if they decide he should come home after this?I can't face that😩

Hello Chrissy, try not to panic and have a look at @Violet Jane s message again. Can you have a word with the manager of the care home, your social worker or whoever is dealing with your case and tell them your worries? I think you know that it’s not the best thing for you or your husband (most importantly) to let him come home. His behaviour will not change, it will go worse and the whole horrible cycle will carry on.
It must be so difficult to hear your husband saying he wants to come home but he will have forgotten most of what happened when he was there (you haven’t!) and probably has a rosy, idealised view of what it will be like when you’re together again. You know it won’t.
You know he is in the best place, with people who can deal with his condition and behaviour. You did your best until you could do no more for both your sakes.
Very best wishes xx

 

[sunshine chrissy]

You've said very clearly that you can't look after your husband at home any more. If you ever have any doubts about this then reread your old posts when you had reached breaking point. I actually think that if you tried again it could be the death of you as the toll on you was enormous. The pacing and wakefulness happened at home and so they are not connected to him being in the care home.

I'm wondering whether it would be better if you and the family stopped visiting for a while as it just seems to upset everyone and doesn't seem to achieve anything.

Your husband is never going to improve. No medication or strategies have worked for him and I think that it does come down to you making a choice about whether or not you are prepared to let his illness break you, which is what will happen if he returns home. Sadly, dementia is taking his life. Don't let it take your life too.

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😭

 

[sdmhred]

This is good news @sunshine chrissy

i had hoped the home would see his behaviour and all you had managed. I’m glad they are looking at somewhere more specialist where hopefully the staff will have the skills and knowledge to help settle him…..and in turn lessen your distress.

I’m sorry it’s such a difficult journey - one step closer. Hang on in there.

 

[sunshine chrissy]

Hello Chrissy, try not to panic and have a look at @Violet Jane s message again. Can you have a word with the manager of the care home, your social worker or whoever is dealing with your case and tell them your worries? I think you know that it’s not the best thing for you or your husband (most importantly) to let him come home. His behaviour will not change, it will go worse and the whole horrible cycle will carry on.
It must be so difficult to hear your husband saying he wants to come home but he will have forgotten most of what happened when he was there (you haven’t!) and probably has a rosy, idealised view of what it will be like when you’re together again. You know it won’t.
You know he is in the best place, with people who can deal with his condition and behaviour. You did your best until you could do no more for both your sakes.
Very best wishes xx

I've just re read Violet Jane's message,it made me feel like I've done all I can,I replied with an update today from the mental health nurse,I'll sleep tonight for sure,thank you for being there Kath610:❤️

 

[Slipstitch]

Oh SunshineChrissie I'm so sorry you're having to deal with this, but very heartened by your latest post that people in authority are taking notice and finding solutions. That must be a massive relief.

Once again Violet Jane is the clear voice of wisdom. I think both of us should print her most recent post out and stick it on the fridge.

Keep strong (and maybe don't visit for a bit?). It sounds as if the right people are on the case to work something out.

 

[sunshine chrissy]

Hello Chrissy, try not to panic and have a look at @Violet Jane s message again. Can you have a word with the manager of the care home, your social worker or whoever is dealing with your case and tell them your worries? I think you know that it’s not the best thing for you or your husband (most importantly) to let him come home. His behaviour will not change, it will go worse and the whole horrible cycle will carry on.
It must be so difficult to hear your husband saying he wants to come home but he will have forgotten most of what happened when he was there (you haven’t!) and probably has a rosy, idealised view of what it will be like when you’re together again. You know it won’t.
You know he is in the best place, with people who can deal with his condition and behaviour. You did your best until you could do no more for both your sakes.
Very best wishes xx

❤️

 

[sunshine chrissy]

This is good news @sunshine chrissy

i had hoped the home would see his behaviour and all you had managed. I’m glad they are looking at somewhere more specialist where hopefully the staff will have the skills and knowledge to help settle him…..and in turn lessen your distress.

I’m sorry it’s such a difficult journey - one step closer. Hang on in there.

Thank you,it's so hard isn't it🥲He's on my mind all day,he's a lost soul,tormented really,he's no idea what's going on,he walks around all day,he eats all his meals but there's no conversation whatever apart from"I want to go home,are you taking me home,when am I going home".He's on respiridone,the dose was increased last week but it's made no difference at all,he's still not sleeping more than 3 hours a night,same as at home😩

 

[JaxG]

I am so sorry for all you are both going through @sunshine chrissy . I can't imagine what it must be like for your husband, tortured is the only adjective for what he is experiencing. I am glad the home can acknowledge what you have been going through - you have done everything you can, the torture would be there whether he is at home or in the care home.
@Violet Jane is right, 'Your husband is never going to improve. No medication or strategies have worked for him and I think that it does come down to you making a choice about whether or not you are prepared to let his illness break you, which is what will happen if he returns home. Sadly, dementia is taking his life. Don't let it take your life too.'
I just hope that there is a medication that can help, or the disease progresses to the point your husband can find peace. ❤️

 

[Slipstitch]

Still with you Sunshine Chrissie, wishing you the strength and courage we all need. Hold on.

 

[sunshine chrissy]

I am so sorry for all you are both going through @sunshine chrissy . I can't imagine what it must be like for your husband, tortured is the only adjective for what he is experiencing. I am glad the home can acknowledge what you have been going through - you have done everything you can, the torture would be there whether he is at home or in the care home.
@Violet Jane is right, 'Your husband is never going to improve. No medication or strategies have worked for him and I think that it does come down to you making a choice about whether or not you are prepared to let his illness break you, which is what will happen if he returns home. Sadly, dementia is taking his life. Don't let it take your life too.'
I just hope that there is a medication that can help, or the disease progresses to the point your husband can find peace. ❤️

❤️

Still with you Sunshine Chrissie, wishing you the strength and courage we all need. Hold on.

❤️

 

[sunshine chrissy]

Thanks to everyone for helping me,I never imagined how hard this would be and how many of us are living this nightmare.We're 3 weeks into respite care now and it's no easier,I must admit I'm enjoying the peace and the clean house but feeling sad and guilty too,he's on my mind all day long,a lost soul who won't or can't join in with activities or even interact with anyone,him though who was always the most friendly and sociable person who'd make friends anywhere.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.💔

 

[sunshine chrissy]

Still with you Sunshine Chrissie, wishing you the strength and courage we all need. Hold on.

❤️

 

[sunshine chrissy]

Here I am again,feeling sad for the tormented soul who was my husband.We've been together 30 years but only got married in June 2019,one of the best days of my life.He's on my mind all day long,does he think I've abandoned him?Is he distressed in there? I've not visited since last Monday,I'm going again this Monday.My family(his stepchildren)booked the week off work when he went in so he had visits each day.There's only me to visit now,my son drops his cigs and treats off at reception on his way to work each day.I don't know if I should go more often but there's no conversation apart from have you come to take me home I want to go home over and over,I don't know if it makes it worse going or not going.I know I can't cope having him home again but he's in my mind all the time,I feel so guilty for giving up💔

 

[jennifer1967]

Here I am again,feeling sad for the tormented soul who was my husband.We've been together 30 years but only got married in June 2019,one of the best days of my life.He's on my mind all day long,does he think I've abandoned him?Is he distressed in there? I've not visited since last Monday,I'm going again this Monday.My family(his stepchildren)booked the week off work when he went in so he had visits each day.There's only me to visit now,my son drops his cigs and treats off at reception on his way to work each day.I don't know if I should go more often but there's no conversation apart from have you come to take me home I want to go home over and over,I don't know if it makes it worse going or not going.I know I can't cope having him home again but he's in my mind all the time,I feel so guilty for giving up💔

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.