An exploration of the UK unpaid carer's world

Christmas 2016 newsletter                                                                        hidden page 

We had a short holiday in May - Glamorgan Holiday Hotel in Porthcawl, South Wales    I had stipulated that the holiday did not coincide with any national events like Elvis Weekend, or Bank Holiday as they make the 90 min journey longer.  Also stipulated - no low resident numbers.  When we arrived, the place was almost empty.   The hotel is now off the list.of suitable venues.

In July, we went to a Richmond Bede Retirement Village.  Such villages are a collection of up to a hundred residences at the centre of which there is residential medical care, restaurant, and activity areas. The last time we went away which was another such venue in October, due to Teresa's declining health, the bed was wet one night and saturated the next.  I was castigated by the venue for not making sure the mattress was covered.  Naturally, I replied that that was not my responsibility.  We left two days early.  £1000 for a week minus the two days.  Has happened before elsewhere.  This village approach is not suited to occasional visitor care/caree couples as the residents retreat to their rooms after meals.  It is increasingly difficult to find a good holiday venue.

Teresa is at her least energetic state to move from bed to commode at 3 and 4 etc in the morning and this is a regular situation. It is a dance with disability.  Carers come in the morning and evening but Teresa cannot coincide their attendance with her readiness to be dressed.  I suffer from severe back pain at times, one cause of an early December hospital 3 day trip, and need to sit on a low stool to dress her. Dementia sufferers often have no sense of time or urgency.  They cannot muster feelings of concern or sympathy.  They lose the other-person perspective. My sister and talk on the phone 1/4 months.  Two weeks ago, I put the phone down and said it was Jane.  "Who is Jane?"  I said who she is.  Teresa is rarely upset but on this occasion, she was angry.  "Why didn't you tell me you had a sister?"  That said, we enjoy life together.  Teresa can still do more than several normal things in life.

Life for Teresa is TV a lot of the time.  She can watch the same episode of Cops or Heartbeat several times.  When the adverts are on, I am asked to get rid of them as she can't understand why they are there.  She becomes quite upset at times but cannot express why.  Christmas cards arrive and most relatives and friends have been forgotten. For some of the time, Teresa  can hold a fairly normal conversation and people may not realise she has dementia. Dancing with Dementia is a good book.  Teresa had a mini-stroke a month ago. Transient ischaemic attack (TIA) here.

Since March, we have been going to a new Leominster Dementia Meeting Centre once a week. DMCs have been successful in Holland for over ten years. The approach focuses on helping people with dementia, their carers, and their families adapt to living with dementia. We consider it very worthwhile despite the two-hour travel time.   However, I feel that other Ross residents should not have to travel so far to benefit from and enjoy what is, essentially, a right to better local dementia care provision.  The aim of the new centre I am setting up in Ross is to bring together carers and the people they care for, with plenty of activities and reminiscence therapy.   It will be open every Wednesday, from 11am to 3pm one day a week from 1 March 2017. All being well.

Best wishes for a good Christmas and 2017.

Teresa and Alan 

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