Not so good

On 3rd April we travelled to our static caravan in Dorset for an overnight stay with a very full vehicle.  The purpose was to do a quick Spring clean and get everything in place for the new season.  The temperature inside a caravan can often go below freezing point during the winter so all food and bedding is best stored at home, and the boiler, cisterns and toilets have to be drained down.  Obviously, I couldn’t contribute much to the work that had to be done and we were grateful for the help volunteered by Sue’s sister.

Night time brought some challenges.  We installed an electric pillow lifter in the bed, a device that emulates an adjustable bed.  That helped.  But to accommodate my ventilator and to give me sufficient space we had to swap sides in bed – after 45 years on the right it’s extremely disorientating to change!  The fundamental problem in bed though was the low height.  Getting out was very difficult indeed and very hard work for both of us.

During the last couple of weeks, I’ve experienced more symptoms of respiratory failure. I find myself being very short of breath when standing up, and when being showered and dressed.  Accompanying the breathlessness is some chest pain (angina) and also overwhelming exhaustion. My feet and hands often have a purple hue, which is a clear sign of lack of oxygen.

I am now tending to go back to sleep for an hour or two each morning, on my ventilator, and using the ventilator again during the afternoon whilst resting and watching TV. I have been prescribed a low dose of Morphine to help my laboured breathing.

I’ve experienced other changes during April.  Excess saliva remains a serious problem, despite two medications and Botox injections into my salivary glands.  My arms are now immobile, which makes daily living very difficult.  My legs are increasingly wobbly, and I feel very dizzy and unsteady when standing.

In the light of all this our routines have changed, and my world has shrunk. Indeed, I don’t now know if I’ll be able to make it back to Dorset again, which is a very sad thought.

We’ve not yet started the care regime I am entitled to. The reason being that we do have established ways of doing things and, whilst Sue is very busy, we jointly think that ‘two’s company, three’s a crowd’ right now.  In any event, with the rate of physical decline I am experiencing speeding up, I think I’m now on a final slippery slope and my remaining life is measurable in weeks and months and certainly not in years.

I’m not sure if it’s the result of medications or my stage of life, but my mind has been very active.  I’ve found it really easy to think of situations and events from 60 years ago and longer.  Before falling asleep I’ve been on several virtual tours of my grandparents’ homes for instance with every detail in really sharp focus.  It’s quite remarkable!  I’ve also been playing events in the future through my mind; but I’m no longer there.  This sounds very macabre but it really isn’t upsetting, and I fully accept that my days are numbered.

This post is a day or two later than planned.  Yesterday I had a big problem with choking and coughing and I was unable to breathe in without my chest rattling badly.  My cough is practically non-existent now, it’s a tiny splutter and I’m not able to clear my airways at all.  Time to be provided with a ‘cough assist’ machine to increase my comfort levels, I think.  More on this next month, I hope

4 thoughts on “Not so good

  1. Thinking of you and Sue and sending love and strength to you both. X

  2. This is a difficult read but sending love and wishing you both strength to deal with the increasing daily issues.
    The candid information in your “diary” will be invaluable to anyone who finds themself in a similar position.
    Thank you Peter,
    Much love

  3. You’re so honest in your description of what is happening to you Peter – and yet not in a self pitying way. I just don’t know how you do it. You really are remarkable.

    Touring your grandparents house must have been interesting. Perhaps the mind can focus more clearly on past memories when it’s not too full of everyday flotsam?

    Lots of love

    Gerry x

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