Tuesday, July 5th 2011

The first week of full-time care

It’s now been a week since I returned home and moved to 24 hour care. The transition has gone very smoothly I’m pleased to say. Filling in all the blank spaces so that I am never without somebody else being with me has given me greater peace and security. One big fear I’ve had since losing my mobility has been the thought of being trapped alone in a burning house. Now that fear has been removed and I feel more at ease. Most of the extra time I’ve gained is of course ‘invisible’ to me as hopefully I will be fast asleep. Nevertheless I have been able to spend a little bit of time getting to know my new waking night nurses.

I have a new mattress. The one I was previously using (just a foam core) was not designed for continual use like I am subjecting it to now. The new one I have is a super duper alternating pressure mattress designed for constant usage. Over the past year or so I’ve tried several types and the only one I could really get on with was the most expensive one (which I’ve been using at the hospice) which is not available in the community. However, the kind folks at the hospice have been able to negotiate with the MND Association for them to lease one on my behalf. It arrived a few days ago and has already made a big difference to my comfort level.

Now I am back home I’ve been able to play around with my wheelchair to see what positions I can tolerate. Unfortunately it doesn’t look like I’ll be able to continue to work at my computer whilst sitting in a wheelchair because sitting upright causes shortness of breath and difficulty speaking. As this is the way I operate my computer it will no longer be practical as I would be out of breath in minutes. What I can do however is to lie in a semi reclined position and either sit on the patio or watch TV for a few hours. All work on the computer is now being done from my bed with a small table positioned over the bed with my laptop placed on top. At least this way if I get tired I am already in the best place to relax.

I’ve been suffering from terrible skin irritation lately. It’s mainly around the underside of my lower legs, basically the area in contact with the mattress. We’ve been trying various creams without success and we’re still looking for a solution. I’m also feeling very tired lately. I just cannot seem to keep my eyes open for very long. I must spend half my day drifting in and out of sleep. No wonder I don’t seem to achieve much any more. Concentrating for long periods is slipping away.

Apart from that the past week has been a busy one for appointments with district nurses and doctors making regular calls. I’ve spent most of that time in bed reading books and magazines during the day and watching TV and video at night.

Mark

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3 Responses to Tuesday, July 5th 2011

  1. Jan says:

    Hi Mark,
    I am pleased you have the 24hr support you need to remain in your own home, and have everything set up there. I admire you so much, inspite of your fatigue and disability, you find a solution to carry on with your blog here.
    I am a nurse working in a Palliative Care Unit, which is NHS run, but similar phylosophy as Hospice, and have cared for patients with MND. I sympathise with your skin irritation problem. I guess what we would do is keep the skin moisturised, use a skin wash such as oilatum, and apply a simple moisturising cream. We would consider a 1% hydrocortisone cream for a short period.
    Do hope you feel safe now in your own home and are able to relax with some peace of mind.
    I shall be thinking of you,

    Jan

  2. CHRIS RUSSELL says:

    DEAR MARK,
    YOU REALLY ARE GOING THROUGH THE WARS!
    I TOO HAVE THAT IRRITATION ON THE BACK OF THE LEGS. I USE ‘BETNOVATE’ WHICH IS A STEROIDAL CREAM WHICH WORKS WELL OVER A PERIOD OF TEN DAYS OR SO AND THEN ‘CAVALON’ WHICH REMOVES THE DRYNESS THEREAFTER. ALSO ‘E 45 ANTI-ITCH CREAM HELPS ENORMOUSLY.
    WITH REGARD TO YOUR MATTRESS I HAVE THE SAME PROBLEM HAVING USED AN ORTHOPAEDIC BED THEN A FOAM MATTRESS WHICH WAS LIKE SLEEPING ON A BLANC MANGE AND VERY HOT. IT MADE IT DIFFICULT TO USE.
    I HAVE BEEN IN HOSPITAL FOR 10 DAYS FOUR MONTHS AGO. THE BED WAS A PRESSURE RELIEVING MATTRESS COMPRISING OF AIR FILLED TUBES WHICH CAUSED MAJOR PRESSURE SORES ON MY BACKSIDE. THE NEXT TIME I WAS IN THE LOCAL VILLAGE HOSPITAL WHERE THEY CHANGED THE MATTRESS TO A ‘MEMOFLEX WHICH WAS HIGHLY COMFORTABLE BUT BEING A 2 FT 9 INCH BED WAS IMPOSSIBLE TO TURN OVER, THEREBY BEING ENFORCED TO SLEEP ON MY BACK WHICH CAUSED PRESSURE SORES AND SHEET BURN ON MY HEELS.
    I AM INTERESTED TO KNOW WHAT MATTRESS THE MND ASSOCIATION LENT YOU AS I WOULD LIKE TO INVESTIGATE WHETHER I CAN GET ONE. COULD YOU PLEASE TELL ME.
    A LOT OF THE SYMPTOMS YOU ARE SUFFERING ARE THE MORE PROGRESSED VERSIONS OF MINE AND IT FRIGHTENS ME TO ENTERTAIN WHAT THE FUTURE HOLDS.
    I WISH YOU ALL THE BEST AND LOOK FORWARD TO HEARING FROM YOU.
    EXCUSE THE CAPITALS BUT I CAN ONLY TYPE RIGHT HANDED, THE LEFT HAVING DIED TOTALLY NOW. THE RIGHT IS HEADING THAT WAY TOO UNFORTUNATELY.
    CHEERS,
    CHRIS RUSSELL

  3. Christian Glover says:

    Hi Mark,

    Just wanted to say Hi as I am reading this on my lunch break at work. Hope you are comfortable and I am sure you are being looked after really well. It was lovely to speak to you again a few days ago even though it is difficult for you now with decreased energy.

    Take care
    Love
    your brother Chris xxx

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