New to disability.

Archeron

Hi all,
While I have been in and out of this forum for quite a while now, I am beginning to consider myself a newbie when it comes to being able to deal with disability correctly.

My mum has been quite ill for some time, and her condition has always been on a downward spiral. Recently, her bad health took a heavy toll on her, and she was admitted to hospital with kidney failure, heart failure and a bad fall, this on top of her previous illness's with which she dealt admirably.

Thankfully, the more immediate danger has lapsed, and she now has some of her health back. Sadly, she has all but totally lost the use of her legs, and is no longer able to stand up or get out of bed. She was unable to be kept in hospital, as there is no more they can do for her, and we were delighted to get her home.
Now that she is home, we are beginning the realize the challenges that lie ahead of us. She is a very heavy woman at app 24 stone (thank you Edema) and as you can imagine is very difficult to manouvre, particularly as she cannot really help us in any way. She is sliding down in the bed and wants to move up further for comfort, but we are unable to do this for her.
There is only me and my 65 year old father at home, so our abilities and combined strenght are quite limited.
Yesterday, we dealt with her having to do No.2 for the first time, and as a fluke, it went quite well (she already had a pad under her from the paramedics who brought her home), but it as shown to us quite how unprepared for this we were. We do not know how lift her so that she is safe, and indeed, we are safe. (I already done my back in on the second night of her being home, I queue for the doctor as I write this). We do not know how to help her go to the toilet without soiling herself or her bed, we do not know how to change her bed linen. We dont know how to left her so that she can move about in the bed.

Please, if anybody out there has gone through this type of thing already, or if someone knows where we can turn to get practical advice on daily living with somebody suffering from such adverse conditions, please let me know, as we are very worried about what the immediate future holds for us all.
In fairness, the local nurse has been good, and she does have an electric bed, and daily visits from a carer to help with her personal hygiene, so there is no problem with actually getting stuff her. we just dont know what type of stuff we should be looking for. I think advice more than anything.

Any advice or pointers would be greatly appreciated.

IncredibleHulk

Hi

Would suggest you tell the nurse what you wrote here . Or ask her who is the manager of the local community care centre and write to him/her stating the facts. Also go to your GP and tell him/her aske him/her who would be person to aproach than aske the GP to writes you a letter for this person. Send the letter and keep a copy.

Some people do not like wriring letters. If that you send me a PM and i will help you write it, you do not have to put name just call your self joe bloogs and your mum Mrs Bloggs and the health manager Mr Smith.

I hopwe your mum gets better. Take care of her there is only one

IncredibleHulk

Hi

Would suggest you tell the nurse what you wrote here . Or ask her who is the manager of the local community care centre and write to him/her stating the facts. Also go to your GP and tell him/her ask him/her who would be person to aproach than ask the GP to write you a letter for this person. Send the letter and keep a copy.

Some people do not like writing letters. If that you send me a PM and Iwill help you write it, you do not have to put name just call your self joe bloggs and your mum Mrs Bloggs and the health manager Mr Smith.

"just dont know what type of stuff we should be looking for. I think advice more than anything. "

Again ask the nurse or doctor. Ask nurse/doctor/manager of community care if she can be assessed so her needs are established and recorded in her file and met

I hope your mum gets better. Take care of her there is only one

Sorry for double post

You need to get in touch with an Occupational Thearapist.
Your nurse is very slack that she hasn't already organised this.
The OT will inform and provide you with solutions and aids to help you care for your mum.
You need a hoist to lift her, these are very easy to use but do require a good bit of space. You may need to adapt your house to get use out of these assistive technologys. There are grants available to help you with this, organised through the OT.
If it is too difficult to lift her out of the bed for the toilet several times a day, you could try the incontinence pads until you get the gadjets in place to get her to the toilet, the nurse should provide you with these.
She shouldn't be sliding down the hospital bed, are you raising her feet up?
The trick with a conventional bed is to raise the bottom half on blocks, to combat gravity.

wheels of ire

You will be amazed how quickly you'll get used to dealing with the loo business. When I first had to wipe my own Dad's bum for the first time,I gagged. Just remember that your mther had to change your nappy often enough.
You need,as others have written, to mobilise the health system. I myself spent a miserable year as a result of somehow falling off radar. And it took quite a lot of fighting,and lobbying to get the support I needed. I never did figure out if it was callousness or incompetence.
Your Mum should have seen a social worker,and a care plan worked out with you and your Dad.
You have to fight for your Mums entitlements,but fight using charm and smiles. The health staff on the front line are overworked,and much more help can be got if they are treated civilly. A lot of frustrated and angry people shouting at me,and demanding miracles, instantly, just pisses me off,(and has nothing to do with my disability.),just like most people.
About lifting and handling your mother - the new Spokeout magazine has a useful article for carers.If you ask the Irish Wheelchair Association I'm sure they'll send you a copy. The Editorial number is 1 818 6455. Ed is Joanna Marsden. Other contacts ther are Kiara Lynch and Colette Molloy.
Your Citizens Advice Office also looks after disability issues, having subsumed Comhairle. Try www.assist.ie for more info.
Don't despair. There are lots of us out here willing to help.
It's late,so I must wrap up now. But if you need to talk to someone,send me a PM,and I'll call you.

Archeron

thanks to all who responded to the thread.
Now its a few weeks later, and we have been advised that the only realistic future is for my mum to go into full time care. We agree that this is the best way forward, and we have had some heartbreaking conversations with my mum about this subject.

She does accept that this is the only viable option, so if my prayers that she may be happy there are answered, then we may have a more permanent solution what we have gone through over the past 48 months.

But I would say that this has been an experience for all of my family that I never expected could occur in a country as "wonderful" as Ireland.
I feel like I have seen the darkest underbelly of the celtic tiger, and its not a nice thing. I would not wish this on my worst enemy.

Wishing well to you all!