can't face visiting

[cricketmom]

Hi, just wanted to ask about how to best support my husband whose mam has dementia. We live about 2 hours away and he simply cannot emotionally face seeing her; she hasn't known who he is for about 4 years now. She's cared for at home by DH's dad, ful time, so basically he has lost both parents - FIL has only just a month ago gotten first helpers in, and that is only for 2 hours one afternoon a week. Other than that he is full time carer. My DH worries about all the time our son (11) is missing out on with granddad; seems cruel to say but grandma has been gone for years. As time goes on DH beats himself up more and more for not visiting, but can't bring himself to say dad I want to see you but can't bear seeing mam. We also can't understand how and why he keeps telling us it's not care home time yet. We want at least one of them to have a life but he is basically housebound caring for her.
Sorry this is so rambling - what I really would like to know is, what would any of you with parents with dementia like to have heard from your partner by way of support? Especially if you live distantly and your other parent is caring for the PWD?
Thanks.

 

[Cat27]

Could your husband ask to see his Dad for lunch etc when the carers are in?
Could you go & visit with him to see what’s really happening?

 

[Sirena]

Possibly your FIL wants to continue caring for his wife as long as possible. But then again, it becomes difficult for someone to see when the time has come for professional help - sometimes they carry on until a crisis occurs (like hospitalisation for a fall or illness). It's very difficult for anyone outside the situation to know what is happening, particularly if contact is just by phone. But I think your husband needs to realise that even if your MIL went into a care home, it wouldn't necessarily change things very much. It isn't a case of "she's in a care home now and FIL has his life back". Anyone who has a partner with dementia will tell you that.

My mother is in a care home, she has no idea who I am but I still visit her every couple of weeks. I dread going but I do it anyway. I don't go because I am a saint, I go because it needs doing, so I do it. I don't really think of her as my mother, just as someone I visit. I usually have more interaction with staff and other residents than with her. That's just how it is.

So what I am saying is, maybe your husband could adjust the way he thinks about it. His mother no longer knows who he is, but maybe he can put that aside in order to see his father. I have no idea what the relationship was between each parent and himself, but it is pointless sitting at home beating himself up about his 'missing' father if he isn't prepared to go and visit. So one way or another he has to make peace with this. None of us want to do any of this, but we have to find a way through it.

 

[Loisand]

Possibly your FIL wants to continue caring for his wife as long as possible. But then again, it becomes difficult for someone to see when the time has come for professional help - sometimes they carry on until a crisis occurs (like hospitalisation for a fall or illness). It's very difficult for anyone outside the situation to know what is happening, particularly if contact is just by phone. But I think your husband needs to realise that even if your MIL went into a care home, it wouldn't necessarily change things very much. It isn't a case of "she's in a care home now and FIL has his life back". Anyone who has a partner with dementia will tell you that.

My mother is in a care home, she has no idea who I am but I still visit her every couple of weeks. I dread going but I do it anyway. I don't go because I am a saint, I go because it needs doing, so I do it. I don't really think of her as my mother, just as someone I visit. I usually have more interaction with staff and other residents than with her. That's just how it is.

So what I am saying is, maybe your husband could adjust the way he thinks about it. His mother no longer knows who he is, but maybe he can put that aside in order to see his father. I have no idea what the relationship was between each parent and himself, but it is pointless sitting at home beating himself up about his 'missing' father if he isn't prepared to go and visit. So one way or another he has to make peace with this. None of us want to do any of this, but we have to find a way through it.

I totally agree with what you have said.....I care for my mom but she isn't my mom, I lost her 8 years ago when I knew something was amiss, but it do 'sent stop me from careing for her, I love her to pieces but the disease has made her so different to the mom that raised me, I just muddle through each day and each day is a new challenge!!

 

[Sirena]

This is a terribly hard journey but


So well put. Couldn't agree more.

I sometimes felt like our family were in a bowling alley. We were all the skittles and the dementia knocked us all down one by one, starting with my husband. So many of us have had counselling, reactive depression, denial and avoidance, stress-related illnesses, not to mention all the practical problems. I can particularly understand a child struggling with a parent's diagnosis. Could go on and on. It's all horrible - but we have no choice but to get to grips with it. Asking for help from outside the family is a good way to start, but the couple at the heart of the storm often need help in achieving even that.

Another thing. I have often found that friends/family have avoided us because they were so frightened of dementia. If they do get in touch and visit they nearly always find it easier to cope than they imagined and even feel better for facing their fears.

I agree with all you say.
I too found people beat a hasty retreat once dementia got past the early stages. The only other relative we have is my mother's cousin, who took 6 months to even notice my mother was no longer in her flat and had moved to a care home. My mother's friends all drifted away except for one, who is lovely, her own husband had dementia so she understood the situation. So it's just me doing everything.

@Loisand - best wishes to you and your mum.

 

[Bunpoots]

Hello @cricketmom

I wonder if some of the problem your DH has with visiting his mum is because he feels, on some level, that he should be able to make things better. He can't for his mum but he can for his dad.

I know how uncomfortable it can be when the vibrancy of the PWD disappears but if conversation is no longer to be had there's always companionable silence or the TV... I used to put the TV on as soon as I got to my dads house simply to drown out the silence. It took my mind off the lack of conversation and the absence of an answer that made sense.
I dreaded visiting but did it because dad needed me to and I loved him.

Maybe you would find it easier to sit with his mum so that he and his dad and son could spend time together - wether it's a few minutes to have tea and biscuits in the garden or a walk to the park. I hope you can find something that suits.