Guilt.

[gringo]

I followed the discussion, in the chat room, on this subject this evening, but being a very slow one-finger typist, didn’t feel able to join in. So decided, with some trepidation, to share here.
I am consumed with guilt for having ‘put’ my wife into a CH. in the first place.
There are posts on here, from time to time, by those who are, or have been, able to keep their relative at home, even to the end. Whilst full of admiration for them, I also have to say that, being all too human, I feel upset that I am, by comparison, inadequate, and have failed in the care of my wife.
But much worse than all the rest, just lately, while visiting, (I am finding it hard to say this) I don’t recognise this slightly disheveled, not too clean, person as my wife. And then I am so ashamed and full of remorse, but the feeling is still there. Thankfully it’s not always like that, but it has happened. The dreadful thing is that her trust in me is absolute, and here I am with these awful thoughts.
On our outings we always stop at a garden centre for a cup of tea. For weeks now they have been decorated up for Christmas and this leads her to tell me how much she is looking forward to Christmas at home. That isn’t going to happen. I am developing a real hatred of Christmas.
It’s been nearly three years now and we are no more reconciled to the situation now than we were at the start. If anything it’s getting worse. I do not believe we will ever be able to accept the way it is. I put my feelings into the poem ’To slip quietly away’ just recently. It was all too accurate and I have to admit that nowadays I find myself too often wishing I could do just that.

 

[Adcat]

Hello Gringo, have you considered counselling? If your open to it I'm sure it would do you the power of good. If you haven't seen your GP, inform them of your current feelings and they should be in a position to offer you support. I'm only on the early stages of the 'dementia journey' with my Dad and I feel guilty all the time. The only way I know to support myself is through counselling. The fundamental issue here is your health and well being. Your wife, though she may be disheveled is looked after 24/7. Who is looking after you? Take care.

I followed the discussion, in the chat room, on this subject this evening, but being a very slow one-finger typist, didn’t feel able to join in. So decided, with some trepidation, to share here.
I am consumed with guilt for having ‘put’ my wife into a CH. in the first place.
There are posts on here, from time to time, by those who are, or have been, able to keep their relative at home, even to the end. Whilst full of admiration for them, I also have to say that, being all too human, I feel upset that I am, by comparison, inadequate, and have failed in the care of my wife.
But much worse than all the rest, just lately, while visiting, (I am finding it hard to say this) I don’t recognise this slightly disheveled, not too clean, person as my wife. And then I am so ashamed and full of remorse, but the feeling is still there. Thankfully it’s not always like that, but it has happened. The dreadful thing is that her trust in me is absolute, and here I am with these awful thoughts.
On our outings we always stop at a garden centre for a cup of tea. For weeks now they have been decorated up for Christmas and this leads her to tell me how much she is looking forward to Christmas at home. That isn’t going to happen. I am developing a real hatred of Christmas.
It’s been nearly three years now and we are no more reconciled to the situation now than we were at the start. If anything it’s getting worse. I do not believe we will ever be able to accept the way it is. I put my feelings into the poem ’To slip quietly away’ just recently. It was all too accurate and I have to admit that nowadays I find myself too often wishing I could do just that.

 

[jaymor]

Gringo you are not inadequate. We say on here many, many times that dementia affects different people in different ways. Some have some symptoms some have others. A symptom can be severe for one person and just troublesome for someone else.

We have a friend who is 20+ years post diagnosis of dementia. He still reads, follows films, does crosswords, walks into town, make a simple meal and cRe for himself. He does not drive though that was his choice right from the beginning. He is a little childish in his behaviour, laughs at sad things and talks over other people but no problem to care for and his wife can leave him for hours and there is no problem.

My husband developed dementia 9 years ago, the first four years were challenging but manageable. The next three were a nightmare that looking back I wander how either of us survived. My husband has been in care now for just over 2 years, he is doubly Incontinent, is non weight bearing, has to be fed and given drinks and most of the time his words are of a language I have yet to recognise. He does not recognise me, has not for 4 years, nor does he recognise any other member of his family.

He is the youngest at 71 but the most advanced through the disease on his floor and been diagnosed less than half the time of our friend.

He has never in the two years he has been in the nursing home asked to come home so I have been relieved of that heartbreaking request but this is because he is so far advanced and was when he went into care.

I too wish it could be different, this was not our idea of retirement but it is the hand of cards we are forced to play, it could have been a good hand, sadly it was not. Please Gringo don't ever think you have let your wife down because you haven't. You have cared for her wonderfully and are still caring.

Take care,

Jay

 

[Gigglemore]

Gringo - you have not/are not failing in the care of your wife. You ARE still caring for her - you are improving her quality of life by visiting, reassuring, and taking out your wife.

"Her trust in me is absolute" = you are doing a fantastic job of showing her how much she is loved. I'm sorry this cruel disease has blighted your and your poor wife's lives for so long. Please be kinder to yourself - if one of your friends was in your position, what would you be telling him? I bet you would be reassuring him that trying to have her live at home was simply no longer an option, and that he was doing a great job in continuing to love and support her in very difficult circumstances.

If she is "not too clean" maybe this is something you need to raise with the care home (apologies if she is resistant to personal care).

 

[yorkieinlincs]

Mike,

I would agree with Adcat and Jaymor have said. Please don’t for one minute try to convince yourself that you have let your wife down or that you are inadequate; you definitely are not!
It happens that with dementia, when the time comes for a CH to be involved, it is not because of a spouse’s inadequacy that this happens, but it is for the benefit of the dementia sufferer. One thing I learned is that I couldn’t look after Ann 24/7, nor can anyone when their loved one needs this much care. Remember, you need to look after yourself also, for who would she otherwise rely on to be with her each week?

The most important thing is that you love her and still care for your wonderful wife.

Denis