The Roller Coaster Ride

17 May 2012 by Meg Pinfield

Ivan’s reprieve lasted just three weeks. Then he had to be re-admitted into a nursing home.

When he returned home in early April, he was very fit. His Parkinson’s disease (PD) symptoms were well under control.  We took things easy at first; during the second week, we resumed the care plan, with Ivan going to his daycare centre twice.  We also attended a medical appointment, so it was a busy week.

On the Friday afternoon, he started talking nonsense.  Next morning he was showing other signs of an infection, becoming wobbly on his legs, and confused.  We called the out-of-hours doctor, who diagnosed a urine infection and prescribed antibiotics which Ivan began taking immediately.  Nevertheless his condition worsened; by day three I was not managing to help him mobilise, and he was completely disoriented.  He was unable to eat or drink unaided and became incoherent.  I had two nights without sleep trying to prevent him hurting himself in his restless attempts to get out of bed.  The NHS emergency care team became involved and paid for night sitters, and a boosted care package of 2 carers visiting 4 times per day.  By Friday, even this input was not enough.

This time we asked if Ivan could be sent to a nearer care home, and he was admitted that afternoon.  It is a lovely, welcoming place.  He settled quickly and began to recover, though was prescribed yet another antibiotic to make sure the bugs were killed this time.  [It is very difficult to know how much of his deterioration is due simply to the infections].  Now, after two weeks there, he is mobile again, and it was suggested he could return home.  But I have intervened and confessed that I cannot cope with this new uncertain situation.

As I am getting older, and more exhausted, the demands of caring for Ivan, with his deteriorating PD are increasing.  This is a recipe for disaster. Fortunately, Ivan is presently in his right mind, and he too accepts that I can no longer manage.  When he is ill, he has no insight into his own condition and the amount of care he needs.  Moreover, the mild level of dementia he has causes him to forget his mobility problems, and he takes risks or tries difficult manoeuvres which could easily result in a serious fall.  He cannot safely be left unattended at any time.

My plea that Ivan should be considered for residential care is being backed up by the staff of the care home (who have seen him at his most vulnerable), and also by our domiciliary care agency.  The agency manager says it is not feasible to build in the necessary care for someone whose condition is so variable.  Even 24 hour support from one carer would not meet the need when Ivan can barely stand or move.  Then two experienced carers, with the right lifting equipment, are needed.  (To have them standing by ‘in case’ would be ruinously expensive – for someone!)

We are awaiting financial assessments and health reviews so that consensus can be reached between NHS, Adult Social Care (the local council) and ourselves.  Meanwhile Ivan is staying put, at our expense.

He understands that if he wants to survive to watch his grandchildren grow and flourish, then residential care such as he is receiving will maximise his chances.  It also means that I am able to spend quality, stress-free time with him.  He doesn’t recognise this advantage, but all onlookers can see how much happier and more relaxed we are together now.  Let us hope it will be possible for us to continue in this way.

About the Author

Meg Pinfield
I am now in my mid-sixties, and started out as a trainee teacher after which I worked in London for the Government employment service. Following the breakdown of my marriage, I left London for Sussex and took up admin-secretarial work, initially at Surrey University. I then moved to Geneva, Switzerland, where I worked for international organisations for 6 years, including a spell at the World Council of Churches. This job involved memorable trips to Africa and around Europe.

Changing direction, I next found myself in Western Massachusetts, USA, studying for a postgraduate degree in counselling psychology and working various part time administrative jobs.

However, by 1993 my ageing parents needed me, so I moved to Cornwall to be near them. It was there that I met my husband Ivan, who is a family friend and was another recent incomer, and we married in 1996. He was diagnosed with Parkinson’s disease in 2006 and since then I have been his carer. I have no children of my own, but I am part of a large extended family, and also share the joys of being a parent and grandparent with Ivan’s family. For light relief I am currently studying maths and painting.