I feel so alone

[highland girl]

I see that but I don’t feel that as he seems to be emotionally intact, I seem to be the only one that can see it. He still wants to love me, be with me, cuddle up. He knows something is different between us but he doesn’t know it’s his behaviour, his dementia. He thinks I don’t love him anymore and so thinks I want him in a home to get rid. Him being in a home is like me telling him I want a divorce. X

Hi @Philpsie

I understand it’s so hard, he’s in a safe place. You now need to rest, get strong again, see your family and grandchildren. Don’t feel guilty I know that’s easier said than done, you hit bottom you now need to build up again, and seeing your grandchildren and taking time for yourself will enable you to do just that. Visit your OH, show him the love you very obviously feel, spend time with him and reassure him. Then hopefully when they have him settled with meds you can have him home again, you will have gained some energy etc, Put something in place to see your grandchildren with their parents present as I mentioned before, yes it’s not the same but unfortunately with this disease life isn’t the same. It’s heartbreaking when my 6 yr old grandson who I used to look after from a baby asks why he can’t stay with us. We explain about grandad they understand more than you realise. This illness is so cruel, it cheats us out of so much, some days I just want to curl up and sleep forever because what is there for us. But there’s our family, there’s the odd moments when our OH seems to come back for a moment and you see their smile and them as they were not as they are now. Yes I agree for most of the time you look at them and think who is this? But that doesn’t take away what you’ve always had. We need to look after ourselves for our futures too not let this illness take us down with it. I know it’s easy to give advice, that’s why TP is good we can’t all be wrong can we surely it’s right to ensure we look after ourselves too. My OH was a perfect gentleman now he’s a ???? So I have to ask myself what would he advise me to do prior to his illness. And show him lots of love and hugs. Sorry rambled a bit. Love and hugs for you . S xx

 

[Philpsie]

Hi @Philpsie

I understand it’s so hard, he’s in a safe place. You now need to rest, get strong again, see your family and grandchildren. Don’t feel guilty I know that’s easier said than done, you hit bottom you now need to build up again, and seeing your grandchildren and taking time for yourself will enable you to do just that. Visit your OH, show him the love you very obviously feel, spend time with him and reassure him. Then hopefully when they have him settled with meds you can have him home again, you will have gained some energy etc, Put something in place to see your grandchildren with their parents present as I mentioned before, yes it’s not the same but unfortunately with this disease life isn’t the same. It’s heartbreaking when my 6 yr old grandson who I used to look after from a baby asks why he can’t stay with us. We explain about grandad they understand more than you realise. This illness is so cruel, it cheats us out of so much, some days I just want to curl up and sleep forever because what is there for us. But there’s our family, there’s the odd moments when our OH seems to come back for a moment and you see their smile and them as they were not as they are now. Yes I agree for most of the time you look at them and think who is this? But that doesn’t take away what you’ve always had. We need to look after ourselves for our futures too not let this illness take us down with it. I know it’s easy to give advice, that’s why TP is good we can’t all be wrong can we surely it’s right to ensure we look after ourselves too. My OH was a perfect gentleman now he’s a ???? So I have to ask myself what would he advise me to do prior to his illness. And show him lots of love and hugs. Sorry rambled a bit. Love and hugs for you . S xx

You’re weren’t rambling, it’s all good advice. How are you at the moment?

 

[highland girl]

You’re weren’t rambling, it’s all good advice. How are you at the moment?

Frustrated/confused, going through a not so good week. OH been awake most of night for last 6 nights, and very irritable, tried to shower him earlier and wouldn’t have it. He needs one so I’ll have to try later.... sorry got called away he needed a wee! Social worker been on phone earlier as I’ve asked for some help getting him dressed undressed morning and night, she’s arranged another visit (assessed us a couple months ago) bringing an advocate to speak for OH apparently I can’t as it’s a conflict of interests, like I don’t want what’s best for him!!! It takes forever to get anything sorted. Still not sure I want carers in but he’s fighting me such a lot now Everyone thinks it will be best. Like we’ve said it’s hard! Gotta go he’s getting restless. You take care and keep posting it’s goid for all of us. Xxxxx

 

[Philpsie]

Frustrated/confused, going through a not so good week. OH been awake most of night for last 6 nights, and very irritable, tried to shower him earlier and wouldn’t have it. He needs one so I’ll have to try later.... sorry got called away he needed a wee! Social worker been on phone earlier as I’ve asked for some help getting him dressed undressed morning and night, she’s arranged another visit (assessed us a couple months ago) bringing an advocate to speak for OH apparently I can’t as it’s a conflict of interests, like I don’t want what’s best for him!!! It takes forever to get anything sorted. Still not sure I want carers in but he’s fighting me such a lot now Everyone thinks it will be best. Like we’ve said it’s hard! Gotta go he’s getting restless. You take care and keep posting it’s goid for all of us. Xxxxx

That’s really surprised me that they wanted an advocate there, oh my goodness as if it isn’t all bad enough already! So if your husband refuses help the advocate says you can’t have help? That makes no sense, the help isn’t for your husband, the help is for you!
Poor you, no sleep! The night time thing must be so so difficult! Do you work?
The experience I’ve had so far in my county is that the carer is very important, when M said he didn’t want help, they said but your wife needs help. I don’t know what they’d do if he kicked off mind you! I felt the same about the carer coming into my house but since he’s been in respite he’s used to people dressing him etc so I think it will work now. X

 

[highland girl]

That’s really surprised me that they wanted an advocate there, oh my goodness as if it isn’t all bad enough already! So if your husband refuses help the advocate says you can’t have help? That makes no sense, the help isn’t for your husband, the help is for you!
Poor you, no sleep! The night time thing must be so so difficult! Do you work?
The experience I’ve had so far in my county is that the carer is very important, when M said he didn’t want help, they said but your wife needs help. I don’t know what they’d do if he kicked off mind you! I felt the same about the carer coming into my house but since he’s been in respite he’s used to people dressing him etc so I think it will work now. X

Hi, the social worker has already decided he doesn’t have capacity so not sure what they hope to achieve from this, presumably to check that I have my husbands best interests at heart. Social worker agrees I need help. No I don’t work, I took redundancy 3 years ago with the intention of having a year out with OH then getting a job, but he deteriorated so much during that year I am now his full time carer. That’s partly why I worry over the financial situation I don’t have income of my own now. He can’t be left alone now so apart from the two days at day centre, I’m with him constantly, although like today some days he won’t get dressed so I can’t take him to day centre. It took a lot to persuade him to go to day centre and he’s nearly been kicked out a couple of times due to aggression, but meds adjusted and he settled back again. But I think we’ve entered another phase now, just spends his time between sleeping and agitated. Hope you’re doing ok today. Xxx

 

[Philpsie]

Hi, the social worker has already decided he doesn’t have capacity so not sure what they hope to achieve from this, presumably to check that I have my husbands best interests at heart. Social worker agrees I need help. No I don’t work, I took redundancy 3 years ago with the intention of having a year out with OH then getting a job, but he deteriorated so much during that year I am now his full time carer. That’s partly why I worry over the financial situation I don’t have income of my own now. He can’t be left alone now so apart from the two days at day centre, I’m with him constantly, although like today some days he won’t get dressed so I can’t take him to day centre. It took a lot to persuade him to go to day centre and he’s nearly been kicked out a couple of times due to aggression, but meds adjusted and he settled back again. But I think we’ve entered another phase now, just spends his time between sleeping and agitated. Hope you’re doing ok today. Xxx

Poor you! I feel for you. Did you say you get respite? The financial side is a real worry, they don’t leave you much to live on, I’m part time so at least I have that, I thought that was bad enough but as you’re not earning that must be really difficult!
I wish I lived nearer we I could drop by and help you whilst my husband is in respite.
Big hugs xxx

 

[highland girl]

Poor you! I feel for you. Did you say you get respite? The financial side is a real worry, they don’t leave you much to live on, I’m part time so at least I have that, I thought that was bad enough but as you’re not earning that must be really difficult!
I wish I lived nearer we I could drop by and help you whilst my husband is in respite.
Big hugs xxx

Thank you that’s a lovely kind thought. You sound as if you are coping a little better. We haven’t had respite yet, really mixed emotions about it but I know I need a break, that’s why I can empathise with how heartbroken you were over the respite, I will feel the same and I’m sure everyone on TP does. He’s napping now so gonna have a cuppa and get some washing in. Thanks for the hugs much needed. Some to you too. Xx