General Chat

I had to call the carers in early last night because Fred needed the commode( expect you wanted to know why) and the carers were very happy to leave him up until his usual time, when they would return and put him to bed but he said for them to put him straight to bed.

One of the carers felt she should first come and ask me if I minded.

It really doesn't matter whether I mind or not, I can get myself to bed at my own chosen time. If Fred wants to stay up all night I consider it my job to arrange that, not to do what suits me.

This has always been my attitude toward caring, that I am to be a facilitator not a controller.

Is this where I am going wrong and making a rod for my own back I ask myself?

Sharron

This is my third attempt. Anything i tried before this one looked all wrong in print. This one probably will too.

I know you love Fred dearly (he wouldn't be living with you if you didn't!).

Does he restrict your life in major ways? Can you do most things that you want? (except for a decent night's sleep).



<3

I suppose he does but I wasn't expecting to be doing this seven years on.

Don't think I am complaining.

Being a carer is something you are never really prepared to do and there is little opportunity to compare attitude and method with others. The care assistants are not allowed, quite rightly, to discuss other clients but, from things they have said in the past, I think my method is a bit radical.

This is just one of my many attempts to explore the methods others have adopted and compare them with my own.

Of course he restricts my life in major ways. I have not had a night away from here in seven years, somebody needs to be here so he can have a bit of a kip in the afternoon (hoist, sling, leg bag), endless organizing, everything must be thought through in detail.

These things I really don't mind, in fact there is satisfaction in getting his life running smoothly. This is one of the things I wonder about. Am I getting more satisfaction fro the job, because it is very satisfying to see him rolling off out to have another of his bloody escapades, than somebody who is looking after their charge devotedly to the point where they are also doing their decision making for them?

Sharron, I think you have got it absolutely right - in fact I think if you had been the type of carer who made the decisions and cared in a more controlling way you wouldn't still be doing this seven years down the line.
I worked in care for many years and in my experience it is much harder and takes more time and effort to stand back and enable someone to lead their own life to their maximum potential.
You have made the difference to enable Fred to really LIVE!
I take my hat off to you Sharron - a real unsung hero.

I am not looking for praise, Lyndi, although I really don't mind it hem hem, but I have never seen care from the angle that you have. It was all new and unexpected to me, and sudden!

There was no preparation and there is very little chance to see how others do it. It is all done instinctively and I feel that I am not doing it as others do because I never see the same result in others.

This is the only place I can get any feed-back and none of you know what he looks like.

I think you deserve a medal Sharron........ at the very least, high praise!

You tell your "Fred" stories with a great deal of humour & compassion.

I've never been in your situation, and never will be. I don't think I'd have your patience.

I didn't think I would have my patience.

It is the ones who do the nursey, nursey type caring who must have the patience I think.

There is some element of living up to a standard involved too and I know very well that I don't do that. I do not welcome medical and care staff to a pristine home where an immaculate old gentleman lies in a stately manner in a tidy bed because I am not able to maintain a standard like that but I am sure all the others do.

Poor Fred has to rough it and cope.

I don't go to the hospital with him and only visited him once during that week he was in there.Others, I am sure, would be ashamed to admit that but that is how I did it.

But it works for you all Sharron, in the best way it can. That's the main thing. You have given up a lot of your freedom but no one can ever say you didn't and aren't doing your best, and it gives Fred a quality of life a lot of other stroke victims would love to have.


Best of luck to you all

Lizxx

But sometimes a carer can take over too much I think and then the person needing help loses what independence and maybe the individuality they did have .

Am not at the carer stage at tho mo with hubby and I do try and and encourage him to find the words when he is struggling with them . Will also be light hearted and tell him don't worry it's not important when he loses his way .

Afraid though as an organiser I do have the tendency to try and smooth the way too much for him and have to tell myself to back off and he isn't a child he is an adult with his own mind still.

i think you are doing a great job with Fred .

I hope when things get worse for hubby I can still stand back and support him from behind and not be overwhelming . It's getting the happy medium right that may get difficult

Sometimes I have to consciously remember that Fred does, indeed, have the capacity to make his own decisions even if he did do all he could to avoid ever making a decision about anything before the stroke.

We had a community nurse come once about a problem with his catheter. There was something not quite right with that department, a bit sweaty or something (nothing to do with me!).

Anyway, this nurse began to tell me about it in that whispery, discreet, don't let them know what I am saying about them voice. I told her not to tell me because it was not mine but to tell him.

She told him alright, she told my other half! I don't knowif she thinks they share one!

I entirely agree with what Lyndi and others say about you & the way you care & treat Fred. Would take my hat off to You Sharron., IF I had one! I know from experience how difficult it is to find way to treat someone like,say Fred. My aunts lived with me in the last years of her life (her little Jack Russell did too!)She had ALS,so could not do anything for herself,not even hold a cup towards the end. Being her sole career was extremely exhausting lot of the time,but I was overwhelmed by grief/sadness at having to watch her 'falling apart' ,as it were,day by day. You have the right attitude towards him,allowing him his freedom & dignity,not treating like an invalid.

I think it was very much a matter of luck that I adopted this mind set. There is so little available to prepare for being a carer and the first weeks are horrible, so much to learn. At that time there is the worry of not doing it right and the worry of knowing what you will have to do. Nobody tells you where to turn for support.

When Fred came home he was angry and frustrated by his own physical inabilities. I had always been the soft target as a child and he was doing his usual blame and punish routine and I was not going to have it. Having walked away from him a few times and waited upstairs until he apologized, I finally told him that I didn't actually give a flying duck about him either but, as we were stuck with each other, I found life easier if I pretended I did.

He had already sussed that he needed to be careful when we were out with the wheelchair because he didn't want to be left in the road.

Maybe others have lovely, compliant old gentlemen to look after. What luxury.

My aunt put up with looking after her husband after a stroke for about 4 years. In fact, he had several strokes, said to be major. He was about 80, extremely intelligent and with great soh. She was in her early 70's and very fit with same soh.

But eventually she had to give in. And he went to a nursing home 300 yards away. It was terrible time for them both, and both of them needed an awful lot of support. I would go over to the home with her and he would cry, she would cry and I would cry. He seemed like a prisoner twice over - in his shattered body and in the home. His speech remained reasonable, believe it or not.

But, within a year, they both seemed much happier. He had loads of new friends, he would regale us with what it felt like to be flown over and into the bath (harpooned whale was his description). She could get out and visit grandchildren and do her garden and the years just flew away from her face.

He died 4 years later. She carried on for about 10 years after he died before she died in her late 80's.

I think if you really love a person, you must want to care for them for ever and ever. But also you need to stand back sometimes and think "is this right going forward for either me as carer or the person being cared for?"

It was especially tough on you Sharron,given Fred's behavior towards you.Don't you have any siblings that could ease your burden,help you out, so that you could have much-needed breaks now & then?
I agree with you John about loving someone etcEveryOne LOved my aunt,she was gentle, kind and very up to date with everything.My adult kids could talk to her about everything,she didn't bat an eyelid at some of the things they told her.She came to live with in the. UK, after her mum died.She & my mother lived together for many,many years.I brought both of them over here Holland in '96 when my aunt was struggling on her own, caring for my mother, who was in the last stage of dementia.Mother died the next year July,aged 84, aunt never got over this. She was 10 yrs. younger and died in 2006.

I worked in Care for about twenty years, and I know that caring for someone however much you love them can be extremely stressful. Getting the balance right between caring and mothering is a very fine line, and can cause immense heartache (and resentment) on both sides. Being pushed in at the deep end so to speak is awful, and I know that no one prepares you for it. I know this because my OH had prostate cancer and when he came out of hospital, we were issued with catheter bags, and a few pads!! Luckily I'd been a carer. so it wasn't a problem for us, but it could have been!! small maters of washing, meds, changing catheter bags etc, all of which was only explained, once briefly,(I didn't let on!) and that was that. The hospitals are fine, it's aftercare that is the problem. I imagine Sharron that the carers have a schedule for Fred's care, so if he didn't want to go to bed, they can't make him (obviously not as it would be assault) so all they can do is to try and persuade him and if that doesn't work, consult you as to how you want this situation to be handled. Perhaps you can talk to Fred and tell him that the carers have only limited time for help and that they can get him completely ready for bed, while not actually having to get into bed, which he can do later with the minimum of trouble, thus keeping his self respect, but at the same time helping you. - same with morning care, get all the washing and other care done ,dress to underclothes and then he can go back to bed until he is ready to get up Have you any facilities for 'respite care' in your area? If so this might be worth exploring.. Every case is different, and my heart goes out to you Sharron, as you are in a difficult situation that so many of us have to face, whole not getting any younger ourselves.

What very wise words magpie, and sound advice.
Fred is extremely lucky to have such a wonderful daughter,who still manages to tell about Fred with humour,when it must be very very difficult for Sharron ,and her oh too, of course.

Oh dear, I am not looking for sympathy and, if Fred needed to go to bed at that time he would have gone and tough titty if he didn't like it.

One of the carers said I don't pussy foot about but I did think it something worthy of discussion when they asked me if I minded him going to bed early.

I feel it important that he have his own autonomy as far as possible. We treat his incapacities as things we all have to live around rather than something he must be singled out for help with and I hope this makes him feel like he is still one of us.

What it boils down to is that I didn't want Andy Pipkin (Little Britain) at home.

Having said all that, I could not have done it without Fred's mate. Everybody should be issued with one of him! He is wonderful!

I'm sorry Sharron, I thought it was your OH who was poorly, not your father. I'm sure you are doing the best you can for him. As I said it's not easy.