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Carers UK Forum • Newbie
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Newbie

Posted: Mon Feb 24, 2014 10:38 pm
by charliewelshie
So, I am new here. Hello!

I've joined because I need an outlet to deal with the stress caused by caring for my Grandmother. Firstly, I have to say I love my Grandmother. There is not a thing I would not do for her but she can try the patience of a saint. She is practically deaf, has various breathing conditions and mobility issues.

Nearly a year ago, we lost my Grandfather, her husband, to cancer. He was a wonderful man and I was more than happy to become his carer when, with a space of a week, we found out that not only did he have cancer but he had less than six months to live. He was gone 2 months later.

Looking after my Grandfather was easy. It was heartbreaking but he listened to me, he listened to his doctors, he did everything possible to make looking after him as easy as possible.

My Grandmother is the complete opposite. She does not listen at all. One of the major issues we have had for years, even before my Grandfather passed, was that she will not wear her hearing aids. We are lucky if she wears one but they are designed to work in tandem so one does nothing to help her. She then pretends she has heard us but she hasn't and it means she gets things wrong all the time.

On top of this, she has a history of taking her tablets wrong even when she has them all laid out in her weekly planner boxes and I have gone through them with her, testing her understanding and so forth.

I am only tipping the iceberg on how bad she is to look after. Even she knows how much hard work she is because she doesn't help herself at all. She is impossibly stubborn. The worst thing of all is despite assessments, the DWP do not think she warrants a carer!!! So after my Grandfather died, I had to find employment.

Social services have been brilliant. They recently got a walk in shower and stair lift installed and my Grandmother now has a lifeline bracelet with means she can summon help in an emergency. They tried to get the DWP to amend their decision but had no joy.

Our family thinks she should be in a care home. We don't want to see that happen because she does not want it. She wants to die in her home of 60 years. She, like her husband before her, does not want outside help like cleaners or carers coming to the house. This is all fine with us but if she won't look after herself or even try to help herself, how can we possibly continue as we are. And despite knowing this, she will not change her ways.

I'm sorry this is a long post but I guess you can see why I need an outlet now.

Re: Newbie

Posted: Mon Feb 24, 2014 10:49 pm
by Frito
Hi Charlie and welcome.

It's heartbreaking watching the people you love struggle to care for themselves and refuse outside help.
Is your gran expecting her family to fill in the gaps?

Re: Newbie

Posted: Mon Feb 24, 2014 11:18 pm
by charliewelshie
What I forgot to add and which is key I suppose is that I live with her. We would be fine is she would wear her hearing aids from the moment she wakes up to the moment she goes to bed. When she wears her hearing aids, we can communicate much better. She understands more of what we say and its less likely that she will get things wrong. She still does but usually its not as bad and we can forgive her because at least she is trying to help herself.

Beyond that we have found middle grounds for most other things. For example, she can cope with very light housework so she does what she can do, I do the rest.

Its an arrangement that would work out well for both of us as she is keeping a roof over my head and I can (try) to keep her out of too much trouble. But its infuriating. The doctors have told her so many times over the years that she must wear her hearing aids. She'll be good for two days and then go back to normal.

If the hospital could, they would do an operation to improve her hearing. However, her other conditions means she wouldn't survive going under.

Re: Newbie

Posted: Mon Feb 24, 2014 11:39 pm
by Martij
Hi Charlie

I am pretty new here so welcome
I can kind of relate to your frustration I live with my mum with moderate Alzheimer's and I work to ... Some days mum is great lets me wash her ... Takes her tablets then the next flat refuses and it becomes a 2 hour job to get her to take her tablets ( there anti biotics for uti so v important) it is hard to see them struggle but then they won't listen or do something simple to make it better.
It took me 2 attempts with the dwp to get mums DLA changed if you have the energy I would try again for attendance allowance really think and go into detail about what you do how would your grandma cope without you or if you need a break usually if you have a care plan off social services it helps to send it in.. I know it sounds strange but I have found quite often my mum will respond better to the carers that come in so that would take some of the pressure of you if you could get them in place

Re: Newbie

Posted: Tue Feb 25, 2014 11:04 am
by charliewelshie
Hi Charlie
it is hard to see them struggle but then they won't listen or do something simple to make it better.
This definitely sounds like my Grandmother.

We're having a good day today. She has both hearing aids in (hurrah!) but I suspect this is only because she had the doctors this morning and she knows I will refuse to take her if she doesn't have them in.

Doctors weighed her today. It wasn't the reason for the visit but the nurse thought she had lost weight. It confirmed the weigh in we did at home a few days back that since 07/13, she's lost 3 stone. She was overweight anyway and her diet has changed dramatically since her husband died. Its more healthy now and her new weight puts her in the healthy BMI bracket. So this is good news so long as she stays there and does not lose too much more.

Re: Newbie

Posted: Tue Feb 25, 2014 11:59 am
by Bluebird
Just wanted to say hello and welcome Image

Re: Newbie

Posted: Tue Feb 25, 2014 12:56 pm
by Pennie
Hi Charlie ...

Welcome!

Please forgive me if I'm stating the b******* obvious, but just wanted to make a quick comment about the hearing aids.

My mother was reluctant to wear her aids - said they were difficult to put in, uncomfortable to wear and not doing much good. She went to the audiology clinic at our local hospital where they discovered that she needed new moulds made - they are now a lot more comfortable, easier to fit and she's more willing to wear them! Also, those little flexible plastic tubes need replacing every four or five months, otherwise the aids lose their effectiveness.

Apologies if you are already fully aware of all the above, but just thought it worth mentioning.

Pennie

Re: Newbie

Posted: Tue Feb 25, 2014 1:29 pm
by Anne001
Welcome, Charlie. I too have a stubborn mother who refuses to wear hearing aids, have baths, get dressed, you name it. Only advice I can give is pick your battles. It gets wearying arguing over everything. Personally I suspect they are stubborn like this because it gives them some control and also that very stubborness (sp?) gets them through their various ailments.

Oh, I got care workers accepted eventually because I told mum the doctor had insisted on them if she didn't want to go into a home. And that they were there to see I was OK, not her! Image

I have no bright ideas because if I did, I would use them myself.

Have a look round the Forum and join in when you can. The good news is people understand though.

Re: Newbie

Posted: Tue Feb 25, 2014 2:43 pm
by charliewelshie
She went to the audiology clinic at our local hospital where they discovered that she needed new moulds made - they are now a lot more comfortable, easier to fit and she's more willing to wear them! Also, those little flexible plastic tubes need replacing every four or five months, otherwise the aids lose their effectiveness.
Thank you for your post.

She had new molds done by audiology in October and she is a regular visitor there. Unfortunately, she has gained quite a reputation in the department and there is now one doctor/nurse that will not see her. Sounds harsh I know but its not his fault. He tried so hard to cope with her but as I said in my original post, she can try the patience of a saint. After about 18 months of seeing her, he got to the point where he just couldn't cope with her "personality".

She has brilliant tricks she plays. She will wear them but not put batteries in thinking she will fool us into believing she is behaving. She used to play with the buttons at the back which would "break them" - I got the audiology team to disable them.

Basically, she thinks I was born yesterday. But I'm nearly 27 now. I know exactly what she is like, she cannot fool me.

Re: Newbie

Posted: Tue Feb 25, 2014 9:35 pm
by bowlingbun
Welcome to the forum. Did you get help with her claim for Attendance Allowance? The benefits system is a bit like Snakes and Ladders. From what you have said her, she needs a great deal of help, so I'd suggest that you get help from a disability rights organisation or our own Carers UK helpline, to go through the forms with you. There are certain "buzz" words which the DWP like. Lots of us here have had trouble with DWP, but there's a high rate of success at appeal.