The stresses of caring

[Brucie]

I don't think I could have coped if I had a disabled child

Nat, I rather think you could cope with anything that life throws at you.

But I do agree that caring for someone with dementia [and, in reality, probably caring for anyone with any serious condition] is something that most of us would never believe we could do - until we found ourselves doing it.

I know I have limits - not in what I try to do, but in the number of people I would be willing to trash my life doing it for. But then I was always known as the most selfish person going, up to the point when..

 

[Lynne]

Bruce

If you were EVER selfish (which I doubt) it's been well & truly worn out of you now. You're an inspiration.

 

[Brucie]

Lynne

You're kind, but - with the exception of doing things for Jan, for whom nothing was ever too much trouble for me - I was not the best of people.

On the one hand, I don't regret it because she deserved/deserves it and her life was all too short [I don't call her present condition living in the normal sense]. On the other hand, I could have done better.

One of the things about exposure to dementia, it either confirms what you are, or it makes one of the "road to Damascus" moments.

Talking of one hand/another hand, it reminds me of a pantomime gag from a production where Jan was a Sherwood villager.

"Why are you wearing only one glove?

"Well, the weather forecast said 'It is going to be sunny, but on the other hand it will be frosty'

Boom-Boom!

 

[Margarita]

Nat thanks for that post ,I was reading it this afternoon & my daughter was behind me ,so I read parts of it out to my daughter ,as she listen silently .

 

[Margarita]

to you all

http://www.mayyoubeblessedmovie.com

 

[jc141265]

Noelphobic,

On what you said,

If you were unfortunate enough to have a disabled child then you would cope because you had to!

Perhaps this is true, but the difference now is that whereas once if I had been told my unborn child would be disabled I would have freaked out, been very much concerned I couldn't love them, possibly would have considered suicide (simply because I would have felt I couldn't cope and couldn't bear to not be able to), absolutely totally would have wanted to give up. I know this is how I would react because i had considered the possibility many a time. Deep down I knew that I probably would manage but my God I knew it would send me to the edge!

But now with the experience of Dad, I understand, that what I, who had never been closely exposed to disability before never understood, is that being disabled is not something to be repulsed by. Ashamed as I am about it now (and was then also but didn't know how to change the way I felt), that is how I used to feel. I have no qualms now that I might reject such a child, I have become far better at separating what is caused by disease or malfunction and the human underneath it all.

I never however, would assume it would be easy, just that I am more emotionally prepared for dealing with such a situation now, perhaps more mature and have more understanding and empathy?

The other day, one of the new guys at Dad's home came up and just hugged me and cried (probably because he sees me do that often to Dad, the hugging bit), a few years ago, I would have freaked out and pushed him away. The other day I just patted him on the back, comforted him and then invited him to walk with Dad and I. This experience changes you, and not always for the bad.

 

[daffodil]

and now the wheelchair........

Hi,

this is my first post. Mum is 81 and in a nursing home. She will be one year in the home tomorrow. This time last year, the place was coming down with staff and there were plenty of activities to stimulate the old people. The living room always had a member of staff, if not 2 there with the old people (while other staff were seeing to other residents) so they were never on their own. We couldn't get over how great the place was.............it was the answer to our prayers after years of caring for her at home, then it all got too much and she had to go in to the home.

How different things are today. The staff have been cut back to just 2 carers in the area mum is in. There are seldom any activities and worst of all, mum fell and cut her head and had four stitiches. Her mobility has decreased rapidly and she is now unable to walk more than a few yards. I went in yesterday to find her strapped into a wheelchair. She has lots of urinary infections and constantly needs the toilet. They tell me she is not in the wheelchair when they are there. The length of time the staff are away at meetings, breaks, whatever is increasing all the time. The staff who are there do genuinely care for mum but there are not enough of them anymore. Is it right that because the level of care mum needs has increased she is strapped into a wheelchair in case she falls? If there were more staff she shouldn't need to be confined all the time to the wheelchair? Its not the staff's fault of course.......its the local Trust and all the cutbacks. My biggest worry is she will in desperation needing the toilet try to get out of the chair and fall (with no-one about). As if Alzheimer's is not difficult enough without having to fight the system too.

Sorry for going on...........I just feel so depressed about it all and know here is yet another fight on my hands to sort this latest problem out.

Has anyone any view/similar experiences regarding the wheelchair? Thanks for taking the time to read this.

 

[noelphobic]

Hi daffodil

My mum was in a care home until the end of November last year when she fell and broke her hip. She was in hospital for 8 weeks and then moved into a nursing home. Although she could walk a little in hospital she has had no physio since she left so hasn't walked since. She also spends a lot of time strapped into a wheel chair. I have mixed feelings about it. I don't like the idea of her being 'restrained' but I also do worry about her falling so I can see the logic behind it. However, if your mum is capable of walking then I do think it is wrong for her to be in a wheelchair. Do they have call buttons in the area the residents are in and would your mum be able to press the button to ask for a nurse to help her go to the toilet? They do have these buttons in my mum's home but I think I am the only one who uses them as most of the residents are in wheel chairs so can't physically reach them! Can you discuss your concerns with the manager of the home? I'm not sure if this has been of much help really as I know there are no easy answers.