Exhausted, Worried and Trapped by Caring

[adeliene]

I'm thinking of you Stacey. I know you have to be strong when you have so much caring and worry. Take care of yourself. from adeliene

[Scally]

It's a very distressful situation and the reality is that I have to accept that my place is with my husband. It's only me that can help my husband and I know that if I was in my husband's situation I would not want to be cared for by a stranger. .

Why exactly? I'm not being intrusive or critical, but this is such a common thing to say here. What is it exactly that you have that others don't? I sometimes wonder if we carers are not all showing the signs of chronic Stockholm Syndrome:

http://en.wikipedia.org/wiki/Stockholm_syndrome

Maybe we should describe a new version of this and call it "Stacey Syndrome" !!

[Alix8]

It's a very distressful situation and the reality is that I have to accept that my place is with my husband. It's only me that can help my husband and I know that if I was in my husband's situation I would not want to be cared for by a stranger. .

Why exactly? I'm not being intrusive or critical, but this is such a common thing to say here. What is it exactly that you have that others don't? I sometimes wonder if we carers are not all showing the signs of chronic Stockholm Syndrome:

http://en.wikipedia.org/wiki/Stockholm_syndrome

Maybe we should describe a new version of this and call it "Stacey Syndrome" !!

Excalibur, i have to admit i sometimes need to take a few minutes with some of your posts, because at first read it did seem like you were being intrusive and critical. The answer to your question is that Stacey has her husband...not anyone elses, and she knows him better than anyone else. We are all carers, we all have that in common. We all carry around some guilt, that's the carers way. But what makes each of us different is the person, the individual, we care for. In total frankness i think we do all have a level of Stockhlom Syndrome, how could we not...when you view the things we have to do, the things we have to deal with, the comments that are thrown our way by the people we care about and the length of time some of us have been doing this for. Hostage victims don't get held for anywhere near the length of time some of us have been carers for! I think it should be called Carers Syndrome, when applied to people who spend every waking moment worrying, guilt ridden and stressed!

Stacey, i understand the lonely-ness of being the only one. But you're not alone, we are all here, so anytime you need to rant or cry or just scream about the sheer futility of the situation please do. We have all been there, and probably will all be there again at some point. Sending (((hugs))) xxx

[MaryB]

Actually the answer is very simple for most carers, what they have that others don't is love for the person they are caring for, unconditional.
Vicky

[Scally]

Actually the answer is very simple for most carers, what they have that others don't is love for the person they are caring for, unconditional.
Vicky

Which is a very good answer! But for some reason, I am still struggling a bit with this explanation. I love my son deeply, it's a huge bond between us that continues to grow and blossom. And they say that people with Downs have the great gift of love, that may be a cliche, but in our case it is true.

But I can also see that - exactly as with any other child - my responsibility as a parent is to let go a little bit more every day, not to cling on.

And in terms of my love for other members of my family - my very frail parents for example - I feel something a little similar. Its hard to say how much time they have left. Sure, they need to know that I love them through regular contact and thoughtful reminders, but the last thing they would want is for me to be fussing over them all the time, or even worse, providing personal or intimate care. The main thing is that they would want to see me - and my siblings - happy and supporting our own families. And as in most cross-generational relationships, there are always conflicts and strains.

Maybe there is a difference with spousal caring, something unique and different? I have never been in that situation, so I don't know much about it.

[rosemary]

something unique and different? I have never been in that situation, so I don't know much about it.

Therein lies the problem.The circumstances each carer/family faces are unique to them, no parent the same, no child the same,no support the same,no upbringing the same.The similarities among us though are some of the feelings we share.I have friends who would not take on a caring role.It does not mean they love their parents any less than I did mine just their way is different.
My 2 main caring roles over the years have differed so much. With one there was the total dependency on me, in a way my mam became the child as everything needed doing for her.With my brother it is so different,like it is with Rob and his son.By that we try help them grow, to have a life away from us.In my own circumstances no way does a 42 yr old man regardless of his disabilities want to spend the rest of his life with his elderly dad and sister.

As regards Rob saying

so I don't know much about it

, I find that one of the positives of boards like this. Not only do we share our own experiences but we learn from others.

[Stacey]

Excalibur,

Stockholm syndrome is a means of self protection. It is not a choice, it is the brain protecting the individual from fear and emotions too difficult to phase at that time. Carers do not have Stockholm syndrome, as Vicky said; we love the people we care for regardless of the impact caring has on our own lives. And we also experience and express the full range of other emotions in our relationships with our carees - frustration, anger and so on. That is not the case with Stockholm syndrome.

COPD is a progressive illness. Although a few years ago I never thought of myself as a "carer", when I look back now I realize that is the role I took on unknowingly. If you live with someone who literally does not have the breath to change a light bulb - what do you call the person living with them? I just called myself a wife. Now, my husband is at the end-stages of his illness. In short, he is dying. I don't know whether that is days, or weeks or months - but he is dying all the same. He is only 60 years old. Death of an elderly parent is sad, but it is expected. Sixty is not young, but when someone is of sound mind (sometimes a bit too sound!) and should still be enjoying life there is a fundamental difference.

Last evening my husband called out, "help me" and asked me to hold his hand because he was scared by a bout of breathlessness. Could you just "let go" and let you child go through that alone or with a care worker? My sister has people who love her and who she loves to hold her hand - my husband only has me. So my choice is to be there with him. It is a trap, but I realize now it is a trap I've chosen.

The help here has been a godsend for me. No one prepares you for a caring role, regardless of the reason. I am learning as I go too. I am learning about caring and I am learning about myself and what is important in life; in my life.

[Lazydaisy]

This is the first time I have felt up to posting for a few days, and very much due to how I am feeling at the momentI am absolutely devastated with agony for my son with Downs. In a way, watching his grief(for the death of his brother) is almost more unbearable than coping with my own. He has lost the parents he had four months ago, and he will NEVER have them back again.I can't even listen to music, while I am driving, as so many words make me cry.He truly believes that if he finds the right way to do it, he will find a way to get back in time and save his brother. he has decided he doesn't want to die as he would miss us so much. He is also getting really frightened if he sees me or his Dad in pain, or even the suggestion of it, in case we end up in A and E like his brother. As he cannot always voice what is in his mind, it is only those who have spend the last 20 odd years with him, who are able to read his expressions.
He gets confused by things on TV.The other day he was really excited and said that Michael Jackson was going to be on Blue Peter, and when I said it must be a recording, as Michael Jakson had died, Ben said "Well Blue Peter don't think so".He is also the only person who can truly see when my husband and I are feeling at our worst. He seems to see inside us.
There are times in everyone's life,when nobody else, other than the 24/7 Carer can cope.
Stacey, my heart goes out to you. I have been torn by responsibilities and love before now, but thankfully, my relatives are local, and even that can be difficult.

[MaryB]

I also think if there are communication challenges or mental impairment then the carer has to be absolutely certain that they are satisfied with what is on offer if anything, in my own case I wouldn't be happy to hand over the care of the cat to what I have seen.
Perhaps it isn't just carers love or sense of duty but also the quality of what is on offer and that differs from area to area no doubt.
We all do what is best in our situautions and has little to do with anyone being more progressively thinking that anyone else.
Vicky

[fluffycat]

I am thinking of you & sending a hug


Take care.