How do you cope with being broken hearted?

[Grahamstown]

I use ‘love lies’ @maryjoan as a way to break him in gently to a reality because he cannot either understand or accept the truth ‘neat’. I call it being economical with the truth, do you remember that phrase? I don’t tell him what is going to happen until it is but I try to prepare the way. He doesn’t want the truth to happen because at the moment it is happening he can exercise his autonomy. This is from a simple thing like having a shower, walking further than he wants, to going somewhere he doesn’t want to go, let alone me leaving him somewhere. He digs his heels in and I have to persuade, cajole or force him to cooperate, especially if it’s something like going to the doctor which he can never understand why. His frequent response to any request is ‘why’, even if it’s something simple like let’s get our coats on. It does exasperate me a lot but it never ends. It wouldn’t be a problem if I could handle it without resorting raising my voice and getting really upset but it’s so relentless that I sometimes, not always, do. He always complies in the end but it’s so stressful.

I am going to try and take this step back @patbryn but am under no illusions that it will be easy, in fact I expect it to be hard. One learns these things on TP. He is going for a lovely ‘holiday’ to a nearly newly built care home which has been built to the best practice standards described in the MOOC UTAS course Understanding Dementia. It ticks all the boxes that we had to tick for the test. When I mentioned this to the coordinator she said that even as they are using it they are feeding new ideas into the plans for the next one. I heard about it from a flyer they sent round at the end of last year and when I needed to think about respite I made a visit. He has been there three times now because they encourage you to take them round several times before an actual admission, for coffee or lunch. I would like to go there myself and indeed some people do exactly that if they need it but then I could go to a regular hotel. He cannot understand that he cannot live alone at home so if I say that I need to have a short break he says he can look after himself. I also feel that now he doesn’t have an independent life which he used to have, it’s even more important to help him have some outside contact. This website is marvellous not just for the support and information so lacking from the professionals but also for a place to work out your own feelings with feedback from fellow carers.

After a sort of normal-ish day yesterday, it looks like we are back to the old routine of his body clock being all wrong. I try to keep him up in the evenings with difficulty and am constantly myself asking how much to let him be. I don’t want him to start being up all night. Happy days!

 

[patbryn]

It is hard to step back, but do it, do it for yourself and never feel any guilt doing it because you have nothing to feel guilty about, your a hero OK, oh yes you are, you really are.

 

[Grahamstown]

It is hard to step back, but do it, do it for yourself and never feel any guilt doing it because you have nothing to feel guilty about, your a hero OK, oh yes you are, you really are.

I simply don’t feel that I am either heroic or what the dementia nurse said that I was when she left last week. I am certainly failing him emotionally now, but I no longer have the same feelings for him that I have had for 50 years, and cannot pretend that and can only give him motherly hugs and kisses. I cannot be the whole world to him which he has sunk into, so unlike his old life. I actually just want someone else to care for him and not me, but that’s not what he wants and it’s probably too soon for permanent care in his case.
“Pick yourself up, dust yourself off and start all over again.”

 

[canary]

I am certainly failing him emotionally now, but I no longer have the same feelings for him that I have had for 50 years, and cannot pretend that and can only give him motherly hugs and kisses.

This isnt failing him emotionally - it is an acknowledgement that the relationship has changed. This change is nobodies fault, it is due to the dementia, but that doesnt mean that there hasnt been a change. We none of us want things to change, but they do and we have to adjust. I no longer have the same feelings for my OH because he has become a different man.

I carry on working from home, and have now convinced myself that, with as much as can be in place at this stage of his dementia, I now live alone - that's the best place to be in my mind. Expect no interaction, no caring, no responses no nothing - and just bumble along with my own life, whilst still holding the steering wheel in check that keeps his life on track......

Yes, this is exactly what we have to do. Its hard to let go, though. Someone said to me "expectations are disappointments in the making"

 

[Grahamstown]

he has become a different man

Thank you Canary, and that is the truth, he is no longer a lover but a dependent man. He doesn’t see it like that I know but still being a very considerate person he is pathetically grateful for any little gesture of affection. As @maryjoan ’s excellent thread has highlighted, it really is heartbreaking.

 

[kindred]

I would like to see Andrea Leadsom's letter - if Social Care is not about throwing money at the problem - and they certainly DON'T throw money - what is it supposed to be about? Us carers quietly going mad with grief and frustration and loss....?

Absolutely and they have no objection to us self funders throwing all our savings at social care. Dear oh Dear. Kindredx

 

[Joy1960]

Absolutely and they have no objection to us self funders throwing all our savings at social care. Dear oh Dear. Kindredx

 

[Joy1960]

This has been such a brilliant thread for me at such a significant time.
I too desperately want to keep
Mum at home as does she.
I go away in 3weeks and have got live in care organised and tbh that will be the only time I will probably relax totally.
Mum questions this each time the lovely lady stays as mum can ‘look after herself’.
I’m getting to the point now that I honestly don’t want to do the caring and really think that mum will be better in residential care with company and being safe.
This makes me feel guilty /upset/angry/ and any other emotion you care to describe.
But selfishly my life and my hubbies are passing by and do we put our life on hold to deal with mum. No one has a crystal ball to see the future but due to the lack if stress our LO have they could certainly out live us!!

 

[patbryn]

I simply don’t feel that I am either heroic or what the dementia nurse said that I was when she left last week. ”

I knew you would not think of yourself in that way. Because we tend to mix with people who are like minded and perhaps do what we would do or do do (that don't sound right) we can lose sight that a lot of people just wont do what we do, perhaps in our modern society most people wont do what we do. So i say your a hero just like the rest of us, reluctant hero's yes but still bloomin hero's.
Don't ever run yourself down, that's the job of other people

 

[kindred]

I knew you would not think of yourself in that way. Because we tend to mix with people who are like minded and perhaps do what we would do or do do (that don't sound right) we can lose sight that a lot of people just wont do what we do, perhaps in our modern society most people wont do what we do. So i say your a hero just like the rest of us, reluctant hero's yes but still bloomin hero's.
Don't ever run yourself down, that's the job of other people

That is a very interesting and significant post, thank you. What will happen then? I agree, many people just will not do it, would think it was outrageous to live such appalling lives as many carers do. But what will happen? Who will do the caring? Thank you.
warmest, Kindred