BED-TIME AND NIGHT CARERS

When I moved into Misty Morn, I chose to place my bed on the far side of the room so that I could see Stoodley Pike from the window. What I forgot was that I was in a bungalow and the curtains would therefore be drawn when I was in bed !!

A few days passed, and I realised I needed to be able to plug in wheelchair from the bed , in order to charge it. I could not get to plug a meter away. The only place for a wall plug was on the opposite wall, thus my bed moved from one side of the room to the other !

Time has passed, I now need a carer to put me into bed. The carer now puts the chair on charge.

I had a brief (very brief) dalliance with a hospital bed. I found it so soft and so narrow that I felt I was drowning in it. It was so narrow that I couldn't move. I need width to spread my arms and use them to pull myself a little bit .To take that small amount of movement away was both inappropriate and cruel.

the narrow bed was taken away, PDQ!

I went back to my normal bed and a Profiling mattress, (to try to prevent pressure sores) , was placed on top of it. It was then very high and it was only with difficulty that I could get on it, and that was with a hoist.

So yesterday, a new Profiling (hospital) bed was delivered. It is 4' wide and actually doesn't look bad at all. It has a sort of Pine finish, and melds well with my bedroom furniture. It goes up/ down, sits you up, raises your legs, head up feet down, head down, feet up....... all at the touch of a button !!

It is easy to lower sufficiently for the hoist to be used, and thus is very safe.

Each night a carer arrives at 10:00. They help me undress,  sometimes  shower ,  and get ready for bed. They wipe my feet and then massage my feet and legs, to aid circulation. (By night time my feet and legs are  quite swollen and  feel like they are burning. The massage certainly helps). The carer often has more intimate things to do too.

When I am in bed, a night bag has to be attached to the normal catheter bag and positioned on the side I am facing.

After 3hrs 30 mins sleep, the carer has to wake me and turn me over. I don't move myself at all when asleep, and if left to would wake in pain from the pressure which builds up in one place, my thighs in particular. This involves moving my legs and supporting my shoulders to move, also moving the night bag stand from one side to the other, without pulling... a delicate operation.

My temperature seems to fluctuate during the night and I can wake cold , or conversely hot. Each time I have to call on my carer to add blankets or remove. If I move my head the pillows may move and I cant get comfy again until the carer  sorts them out. I need a spray if my mouth gets dry, which it does as I don,t produce sufficient saliva, I may need a drink of water........ the list goes on. The carer may well be in my room every hour or so throughout the night.

The agency that provides these people has just rung. It seems that I might be a little too picky about whom I will have doing my night sits. !!!!!!

I don't feel I'm picky. After all who would want someone who sings with the TV all night, someone who doesn't wash their hands and hands you a glass with their hands right over the top, who says, are you OK? as they waltz out of the room, who telephones friends throughout the night and doesn't answer your calls, who pulls your legs roughly onto the bed, who places the night bag just too far a way that the tube pulls and gives you pain.... and soooooooo much more.

Consequently, they are finding difficulty finding appropriate carers .
I see this, not as my fault, but a fault of their recruitment policy and  majorly a fault of their low pay, barely above minimum wage for antisocial hours work.

But do I accept a lower level of service?
No, I cant !
I won't !!

And why should I?
Why should I?

It's my life, whats left of it, and I should, at a minimum, be able to sleep safely and comfortably.

So tonight , I have a carer from league two, because the league one players are unavailable through other work, family commitments or other valid personal reasons. Simply its the case that they don't employ sufficient carers to cover such eventualities.

And who is it at the end of the line?

Those of us being cared for!

I have my voice to indicate my needs, but what happens when I can't?
I am filled with fear.
So, so , frightened about this aspect of the future. I may have league two people caring for me and be unable to express this sufficiently.
It is a simply terrifying aspect of the future, never mind all the other MND aspects of swallowing and breathing.

PS. For those of you that don't know how MND works, Nikki's Simple Guide:  Motor nerves, (the ones that make muscles work), stop working, but Sensory nerves aren't , thus you have feeling.
So if I was hit on the toe with hammer I couldn't move it out of the way but it certainly would hurt !!

HUG ME , I'VE GOT MND