A Carer

[linda a]

Oh how sick i feel its been a while since i looked on the site and i just wanted to rant,
I have cared and still care for my husband and work full time its now very hard to do the two things so what do i do my poor husband just wants to be with me and there are days when i think i can take it all on . hes in respite so im ok and back to where i can take it all on ha! ha!
our daughter so needs to get her life and study back shes had to finish school without her A Levals just cant study with Lewy Body Dementure in the house,
Shes going to do a course at collage in September and will need to study,
im so torn and i dont know how to let go i cant aford to give work up and friends and family do see things much clearer than me
i cant win any way can i just feel guilty

 

[Brucie]

Hi Linda

I have moved your post to a thread of its own in the Support area where more people will see it, and they will all understand what you say.

you ask

can i just feel guilty

Welcome back to a large club of folks to whom guilty feelings may be absolutely expected, and respected.

 

[Skye]

Dear Linda

Please don't feel guilty. We all feel at times that we can't do any more.

You've done a wonderful jub, caring for your husband and having a job at the same time. I don't honestly know how you've done it!

But it does sound as if you need to rethink. Your health is suffering, and your daughter's education, and that's so important for her.

How had your husband settled in respite? If he's content, is there any possibility of making it permanent?

I know you don't want to think about that, neither did I, but my husband's in care, and is being well looked after. I se him every day -- and I can sleep at nights!

I think for the sake of your daughter and yourself you should be seriously thinking about it, either in the place he is now, or another one.

Please think about it.

Love,

 

[Lynne]

Hi Linda

I'm sorry you need this site, but welcome, and rant away!

It's awful when the whole family is affected, and you are all very young to have this thrown at you.
It's not easy for any of us, but when you are in the middle of a tug-of-war between the needs of your husband & the needs of your children it must be devastating. (I'm saying conflicting NEEDS here, not saying that there us any personal conflict.)

It does help a little to let off steam to understanding 'listeners', who will not themselves feel distressed in the way that members of family might.
Because we can look at your situation from an outside perspective, we might be able to come up with some helpful comments.
I hope also that you may benefit from reading & joining in other peoples' threads.

Regards from Suffolk

 

[lesmisralbles]

Lewy Bodies

Hi Linda
We have been told that Ron my hubby has lewy bodies, he also has Parkinson's. Does your hubby have Parkinson's ?
Barb & Ron X

 

[BeckyJan]

Linda:

Hello and welcome again to this very understanding site.

Firstly I think you need to address this feeling of guilt. YOU are not at fault here - you have and are doing your utmost to help your husband. You also have a child to support in every way.

Why should you feel guilty (we all do)? You cannot do more and in the end the dementia will take over - THAT IS NOT YOUR FAULT.

I do hope you get much support here on TP - it is a wonderful site and you can relieve yourself of innermost feelings and share with others.

Take care Jan

 

[Grannie G]

I am going to campaign to........

Ban the Guilt

Everyone on this site is a carer. Everyone on this site is doing their level best for their cared for. Sometimes it becomes impossible to provide the quality of care needed so outside agencies are utilised.

Guilt is wasted energy and emotion. Ban the guilt.

 

[lesmisralbles]

Way to go Silvia

I agree, but it is difficult
BUT, AS ALWAY'S
YOU ARE RIGHT
Barb & Ron XX

 

[Margaret W]

HI Linda

Well, as everyone else has said, you have nothing to feel guilty about. You could justify guilt if you didn't care (and some relatives don't), but not if you are doing your best. Which you are, even though you haven't got it working yet. NO GUILT!

Now, Linda, you have to look after yourself. You will be no use to anyone if you don't do that. So find at least an hour a day to do something for you - read a book, watch Deal or No Deal, have a long bath. Your daughter, sad though it is that her A-levels are affected, she will recover. I know it sounds wrong, and I would have been devastated if my girls hadn't got their A-levels, but they didn't have any personal problems at the time. I'm a University lecturer, and we have plenty of young people who didn't do things according to plan, and if they are bright and keen enough, they will do it later, and go on to get a good degree or whatever qualification they were aiming for. A-levels and degrees are not the be-all and end-all. There are lots of different routes into careers nowadays, they don't all hinge on degrees. Your daughter will get where she wants to be, it just might not be via the most usual route, it might mean a bit more effort when she is better placed to give it, but she will get there. I am 100% certain of that, I know it happens. Tell her that, too, cos she will be worried as well. Do you know that you can become a qualified Chartered Management Accountant with no entry qualifications at all? There are ways and means.

A degree isn't a passport to anything these days. My very bright daughter scraped her 2:1 degree, got a brilliant job, and lost it within 6 months cos she failed an exam. She then spent a year selling cuddly monkeys at Bristol Zoo in the shop, but I knew she would eventually get back to her studies, and she has. She needed that break, for different reasons from your daughter, but don't worry too much about her career. She will get where she wants to be.

Meanwhile, you have to cope with your husband, and I hope the respite went well.

It must be very hard doing a full-time job when all your husband wants is for you to be with him. Well, you have to think of the money, you have to live, but could you manage in a part-time job? Perhaps for six months. Would your employer consider that on a temporary basis, just to give you a breather? I know lots won't, but I've just negotiated a year out of my job with no pay, but I can walk back into the job in a year. Fortunately, I can afford to do without a year's pay cos my husband earns a good wage, so it might not work for you.

I hope you work something out, but if you don't, remember, NO GUILT.

Much love

Margaret

 

[linda a]

Thanks all of you

Im not missrable to night and thankyou for your knind words but your kind words made me cry ,i get so uptight at times just not knowing which way to turn,
I still dont know what to do there is no easy choice ,
I dont feel guilty for Rays illness i as i know its not my fault i fell sad and lost i am loosing my best friend the one person i trusted with anything hes the knindest man and he can spell which is not my best assest ,
And i wanted to look after him but the illness is running faster than i can keep up with,
He comes home on Sunday we have had some respite and i know he cant wait to get back ,
All the best to you all just wanted to say thanks Linda x

 

[Margaret W]

Hi Linda

Don't worry about spelling, we'll all manage. We just need to understand what you say, and we've done okay so far.

Much love

Margaret

 

[Grannie G]

Dear Linda

,
And i wanted to look after him but the illness is running faster than i can keep up with,
x

You can only do your best. If it is too much for you you must hold your hands up.

Are you getting any help from regular outside carers?

 

[jackie1]

Hi Linda,
I think there reaches a time for every carer when they just can't carry on. None of us should feel guilty about that, we have done the best we can.

And there also comes a time when we have to put OURSELVES and our families first. No matter how hard that is for us to do, or what others may think.

I can imagine how you must feel about your daughter, I worry about our oldest not doing as well in his SATs as he should next year and he's only 10!!! But I tell myself that I started work at 16 and by the time I left to have our 2nd child I was a senior manager with a multi national organisation. So I know qualifications arn't everything.

I would never dream of telling anyone what to do but maybe it's time to start to look into either longer respite or long term care.

Whatever you decide I know it will be what's right for your family.

Love
Jackie
xx

 

[gigi]

Hello Linda,

I've just caught up with your thread..nothing new to add as I've not been in your situation...

But to tell you how much I admire you..and the efforts you are making to hold your family together..it can't be easy...

As you say

illness is running faster than i can keep up with,

Try to be realistic..you know you will never conquer the disease..so accept help, respite,...and take care of yourself...

Love gigi xx