Nothing I do is right

[Bettusboo]

Just feeling that I can’t do anything really for my parents short of moving in with them and I am not prepared to do that. Both have dementia. I have PIA and neither of them have capacity to make decisions about their care needs. Mum moved into a care home in September following her third in a series of falls. They weren’t happy when they were both home together and weren’t coping. Now she is saying she wants to come home even though she is really well looked after and seeming to be having a great time in her care home. My Dad wants her home and when he visits and speaks to her on the phone he constantly asks her when she will be home. He won’t accept any explanation of why this is not a good idea and neither will she. He is accepting daily carers for an hour and a lady who visits some afternoons but not every day. He is constantly on the phone to me at all times of day not knowing where mum is and asking when I am ‘coming home’’ or thinking I am my mum. I am there two or three days a week but don’t live nearby and have a family so can’t and don’t want to do any more than this. This week I tried to introduce another carer for social support but he wasn’t having any of it. A few weeks ago I tried to get him to stay in respite with my mum but he refused. Today he has been on the phone saying he is bored and fed up and asking where my mum is. I can’t see any way forward and it feels cruel to leave such a confused man on his own but equally cruel to force him into residential care against his wishes. I tell myself that he is ok most of the time and I only hear from him when he isn’t. It just all seems so hopeless and it doesn’t seem like there is anything I can do about it. Sorry for the negative post but having a bad day.

 

[Palerider]

Just feeling that I can’t do anything really for my parents short of moving in with them and I am not prepared to do that. Both have dementia. I have PIA and neither of them have capacity to make decisions about their care needs. Mum moved into a care home in September following her third in a series of falls. They weren’t happy when they were both home together and weren’t coping. Now she is saying she wants to come home even though she is really well looked after and seeming to be having a great time in her care home. My Dad wants her home and when he visits and speaks to her on the phone he constantly asks her when she will be home. He won’t accept any explanation of why this is not a good idea and neither will she. He is accepting daily carers for an hour and a lady who visits some afternoons but not every day. He is constantly on the phone to me at all times of day not knowing where mum is and asking when I am ‘coming home’’ or thinking I am my mum. I am there two or three days a week but don’t live nearby and have a family so can’t and don’t want to do any more than this. This week I tried to introduce another carer for social support but he wasn’t having any of it. A few weeks ago I tried to get him to stay in respite with my mum but he refused. Today he has been on the phone saying he is bored and fed up and asking where my mum is. I can’t see any way forward and it feels cruel to leave such a confused man on his own but equally cruel to force him into residential care against his wishes. I tell myself that he is ok most of the time and I only hear from him when he isn’t. It just all seems so hopeless and it doesn’t seem like there is anything I can do about it. Sorry for the negative post but having a bad day.

Sometimes I found posting on TP means walking away for a day and seeing who posts what and then recollecting where I stand in all the dysfunctionality around me. We can only do what we can do in the circumstances -I don't know if you are a lone carer or from a wider family/community that can help. I ended up being a lone carer for my mum who I love very much and we were always good friends in our lives, but when dementia takes a firm grip as it does eventually then we have to (even though we don't want to) make some big decisions -may be this is your crossroads now?

 

[Bettusboo]

Sometimes I found posting on TP means walking away for a day and seeing who posts what and then recollecting where I stand in all the dysfunctionality around me. We can only do what we can do in the circumstances -I don't know if you are a lone carer or from a wider family/community that can help. I ended up being a lone carer for my mum who I love very much and we were always good friends in our lives, but when dementia takes a firm grip as it does eventually then we have to (even though we don't want to) make some big decisions -may be this is your crossroads now?

It’s all on me I feel. My brother’s mental health has suffered to the extent that he can’t be involved. I’m on egg shells with him much of the time and have feel I have now lost that previously supportive relationship. I feel like I’ve been stuck at this crossroads for a really long time. The only thing that moves things along are the accidents waiting to happen. That was the case with my mum falling and being in hospital before moving into the care home. I feel like I’m waiting for the next disaster to happen and it will be my dad this time. Not a case of if but when.

 

[Palerider]

It’s all on me I feel. My brother’s mental health has suffered to the extent that he can’t be involved. I’m on egg shells with him much of the time and have feel I have now lost that previously supportive relationship. I feel like I’ve been stuck at this crossroads for a really long time. The only thing that moves things along are the accidents waiting to happen. That was the case with my mum falling and being in hospital before moving into the care home. I feel like I’m waiting for the next disaster to happen and it will be my dad this time. Not a case of if but when.

Here is the cruxt of my experience, I had a brother too but he didn't want to help, there comes a point when you decide to cross over the crossroads and on who you take with you and who you have to leave behind if its you that has become the one person to deal with the current siruation, one thing is for certain to me, it seems to me that you are the person that is going to have to cross sooner or later and make peace with the new direction but not necessarily the choices we have to make because that takes a long time to come to terms with.. does that help?

 

[canary]

Im glad your mum seems to be enjoying herself. Im afraid that it is par for the course for people with dementia to ask to go home. I wonder whether your dad getting upset and talking to her about coming home may be triggering her? The way to deflect this is to use love lies - that she is "convalescing" and can come home when the doctor says, or something else that she might accept. Perhaps your dad might accept that she is "convalescing" too?

I think you are probably right that you are approaching a crisis with your dad too.
I know that nobody likes to do things that the person with dementia does not want, but there comes a time when you have to start to do what they need, rather than what they want.

 

[Palerider]

Im glad your mum seems to be enjoying herself. Im afraid that it is par for the course for people with dementia to ask to go home. I wonder whether your dad getting upset and talking to her about coming home may be triggering her? The way to deflect this is to use love lies - that she is "convalescing" and can come home when the doctor says, or something else that she might accept. Perhaps your dad might accept that she is "convalescing" too?

I think you are probably right that you are approaching a crisis with your dad too.
I know that nobody likes to do things that the person with dementia does not want, but there comes a time when you have to start to do what they need, rather than what they want.

Absolutely

 

[Bettusboo]

Here is the cruxt of my experience, I had a brother too but he didn't want to help, there comes a point when you decide to cross over the crossroads and on who you take with you and who you have to leave behind if its you that has become the one person to deal with the current siruation, one thing is for certain to me, it seems to me that you are the person that is going to have to cross sooner or later and make peace with the new direction but not necessarily the choices we have to make because that takes a long time to come to terms with.. does that help?

Sort of but what does ‘the crossing’ involve ?

 

[Bettusboo]

Im glad your mum seems to be enjoying herself. Im afraid that it is par for the course for people with dementia to ask to go home. I wonder whether your dad getting upset and talking to her about coming home may be triggering her? The way to deflect this is to use love lies - that she is "convalescing" and can come home when the doctor says, or something else that she might accept. Perhaps your dad might accept that she is "convalescing" too?

I think you are probably right that you are approaching a crisis with your dad too.
I know that nobody likes to do things that the person with dementia does not want, but there comes a time when you have to start to do what they need, rather than what they want.

Thank you. Yes, the convalescing story is the one we tell them. And yes, the care home says that my dads visits and phone calls are what unsettles her. We’ve pared back the visits but I can’t stop the phone calls. He rings lots of times every day and the care home has been great about it - putting him through sometimes and deflecting sometimes. I often get calls too and often he thinks I am my mum but sometimes not. I’m thinking about a live in carer for my dad. If it’s a woman I don’t think he’ll question it too much as much of the time he thinks his female carers are me or my mum. The one he turned away recently was a man so I’ve learned something from that anyway.

 

[canary]

We’ve pared back the visits but I can’t stop the phone calls.

How is he dialling ? Do you have the care home number on speed dial, or written somewhere? Perhaps it might be removed?

It sounds like getting female carers in is the way to go. Just organise the extra - dont discuss it with him.

 

[Palerider]

Sort of but what does ‘the crossing’ involve ?

It means making some big decisions but also means doing the right thing by someone with advancing dementia when we can't anymore

 

[Bettusboo]

How is he dialling ? Do you have the care home number on speed dial, or written somewhere? Perhaps it might be removed?

It sounds like getting female carers in is the way to go. Just organise the extra - dont discuss it with him.

Thank you. This has been helpful. What a difference a rant and some thoughtful replies can make.

 

[Bettusboo]

It means making some big decisions but also means doing the right thing by someone with advancing dementia when we can't anymore

Thank you. That is helpful and I’ll keep going.

 

[Palerider]

Thank you. That is helpful and I’ll keep going.

Good luck and welcome to one of the most hardest and dificult journeys you will ever undertake....we are always here if you need any help or advice and no doubt you will need support if nothing else -let us know how you are in yourself and don't be afraid of coming back to TP if you need help. a chat or some other advice that only the AS can provide, but its also ok if your back tomorrow...as many of us are

Welcome to TP and your new family if you choose to use them