Tuesday, April 29, 2008

Already a year in this flat!

On May 7 it's a year that we are living here when I look back I can see lots of nice things.

Like being able to go out without booking the mobility bus and without being carried down the stairs in that scary little seat swinging from hooks between two men.

Its nice and roomy here with lots of floor to ceiling windows so I can see out and enjoy all the neighbours going by.

It's a nice place for people to come round to and we have had more people visiting us here than in the old place.

Have really enjoyed being able to get out so freely especially going to the market, love being there seeing all the people exchanging smiles and hello's with strangers.

Looking at all the stalls and admiring the wares, the colours and the smells. Beautiful!

What's not been so beautiful is how much my condition has deteriorated since last May.

Last May just after we moved I could not write with a pen any more, one minute I was writing lists and the next that was it could not hold a pen.

Now I can just about manage to eat, getting the fork from plate to mouth is a hell of an effort.

Picking up a glass is tricky and I can't drink out of anything but plastic cups these days.

So my days of sipping a rum punch or a nice wine while eating pistachio nuts are sadly over.

The wee bit of mobility I had last year is gone as I can no longer put on a top of jacket or my earrings.

Can just about brush my teeth but not put the toothpaste on my brush, can't even wash my face can't cup my hands and bring water up to my face.

The passive hoist has been bad, very bad for me as it caused alot of spasms, putting the straps von caused me dreadful painful spasms.

This was also because none of the carers could use it properly, despite Richie showing them how to put it on and both of us explaining it to them thoroughly time and time again.

Every time they caused me alot of pain and discomfort, plus by the time I had explained how it worked every time they came round (three times a day)it was too late and I had wet myself.

The passive lift took away all my control over my bladder as I no longer got pulled up onto my legs so my legs and my stomach muscles became unused and totally inactive.

Which resulted in even more spasms and because they were generally late and often just never turned up at all it meant I was often left sitting in wet pants and literally in shit.

As a result my doctor suggested a catheter as it was distressing to be left in the lurch so often.

The day after the doctor had installed the catheter without warning the people supplying the carers decided unilaterally to reduce the number of their visits from three times to once a day.

This was dreadful and scary as this was the time I had loads of spasms and of the sort that toppled me backwards over the w/chair, very scary.

Despite us having to pay alot they were not doing much for me apart from putting me on the toilet, they were supposed to shower me and dress me but often would suggest a quick wash instead.

They always made it clear they had no time so I would have to be very assertive to get them to fill up my water bottle and make me a pot of tea.

At lunchtime I sometimes would not be quick enough reminding them to get me food Richie had prepared out of the fridge for me.

When that happened I would have to wait until their third and last visit at 14.00 pm.

Because the agency we were with cut their care down to one 10 minute visit per day we went to another agency and it all went from bad to worse.

These people were mostly crap, two were at least nice and with one I did feel safe and we did have a laugh.

Laughing is important but so is good care and attention to details and this is especially important when you are looking after someone who has become so handicapped.

The problem with a catheter is that the carers and we were unaware of the risks of sitting continuously all day without being lifted out of the w/chair.

Its really important to literally get off you arse otherwise it will result in sores on your bum.

I would really recommend others to not switch too quickly from an active to a passive hoist.

Keep using it as long as possible as once you use the passive lift it will affect your whole body and making it too passive too quickly.

This will result in all sorts of problems its like dominoes tumbling over or a chain reaction.

The knock on effects are spasms, loss of bladder control, muscle weakness and sores on bum and legs.

Which again precipitates further reactions in your body and causes great stress and this you do not need.

Looking back I think now happy days when I was not constantly in pain when I could roll around the room using arm power now I am in an electric w/chair.

Feel like the Star Trek captain encased in his machine, like him I am now half human half electric w/chair.

In a wee while its off to bed and Richie will have an hour of hard work as he hoists me out of the w/chair and into the movable shower/toilet chair and puts on my night time tee shirt.

Then its off to brush teeth apply soothing gel to ears, throat, neck and arms that have been scrapped raw by tee shirt and jumper being pulled over my head.

After that its time for Richie to empty the catheter bag once again and get my bum washed and cream applied helps keep skin moist and stops it drying and tearing and then its on with the disposable pants and long john's and then its sleeping tablets and bed and oblivion.

But hey I am still tapping out some words, talking and loving and laughing with my darling.


Diane J Standiford said...

We may be disabled now, at too young an age, but BabyBoomers BEWARE, you'll day WILL come and these care givers will be worse than the ones we have now. What we have now is AWFUL, HORRID, close to inhumane, I have these stories, YOU have these stories, healthy people can't believe them--BELIEVE. I agree we must make the best of it, but we must also get people to speak up for us, demand changes, demand better care. My heart goes out to you.

Anonymous said...

tho we will in all likelihood never meet, your posts are such a huge inspiration to me. i can very easily get all whiney and host quite elaborate pitty parties for myself. then i read your posts, and your amazing attitude, and i redirect my thoughts and energy in positive directions, and i look out my window at the forest that surrounds my house, all just waking up from winter, and i smile. thank you from the bottom of my heart for sharing your life with me.

Anonymous said...

Having been employed in health care all my life, I know all too well what type of personal care is being given to the disabled. Although I have been forced onto disability since June 2007, I have seen first hand what kind of people go into home care field.

Every once in awhile you get a good and caring worker, but being on the receiving end for a few months, I haven't witnessed that. YET. There should be some one checking up on these home care workers - spontaneous, unscheduled visits by supervisors. But agencies are scrambling now for help and are not willing to lose the ones they have - whether they are good or not. It is a body going out to do a job on their roster and that's all they consider.

I feel bad for you that you have decompensated so much in the last year and believe part of that is due to the type of care that has been given to you and partly because of the progression of the disease.

I will keep you in my prayers and thank you for all the effort you put into posting on your blog. It must be a tremendous effort for you.

I have no answers to the woeful home care system and can only pray that all of us MSers keep on being vocal (in voice and print).

Take care, Anne

Merelyme said...

i am just so very sorry you have to go through all of this. i am just happy that you have richie there to help you as best as he can. it does make me angry to hear that your caregivers have been so negligent. wish there was something i could say to make things better for you.


Your voice is so clear and strong. Thank you for speaking the truth as it is the only hope for change in the way the disabled are treated.