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Cumulative Caring Crises and Residential Ripples

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The situation with my lovely dad is becoming untenable. ‘Becoming’ is probably rather too tame a word for it – things have changed rapidly over the last nine months and I feel like we are dealing with a runaway steam train (dad would love that analogy) about to hit the buffers. The problem is: how much track do we have left before we hit them?

Christmas was Christmas, but after that it was downhill all the way.

February saw a return of the bladder cancer that has now been treated three times, but this new growth is a different type that would normally require nine sessions of chemotherapy on a weekly basis. Simply taking a biopsy resulted in a rampant infection and an emergency hospital admission, followed by a twelve-day inpatient stay. Continence problems are becoming more frequent. The urology team feel that dad is too frail and susceptible to further infections to be worth risking this treatment. We are sitting on a tumour-timebomb, and when it roots down it could spread quickly.

Dad’s eyesight has also deteriorated badly (he is registered partially-sighted) and he can no longer see to use a bank-card machine properly or to write a legible signature on a cheque. With me being the nearest relative (at 200 miles distant) it is difficult to put financial safeguards in place yet give him any independence. He was also sadly targeted by fraudsters in June, and was persuaded to go to his bank for a very large sum of money. Fortunately the bank were vigilant and rang me as one of the Power of Attorneys, and another emergency trip down south to provide support and to secure dad and the house was necessary.

The third strand of dad’s needs he classifies as ‘confused-dot-com’! If he was capable of making purchases the advertising chaps and chapesses would be really pleased with themselves. Unfortunately their witty slogans simply serve as a humorous way for us to talk about his Alzheimers without using the ‘D’ word. And the confusion has certainly got a lot worse. Just last week we had all three daughters and a friend of dad’s from church and the local vicar all searching for his missing dog only to find that she’d spent the day at her normal dog-grooming appointment. Phone calls and emails were sent from as far afield as Australia and southern France, dog wardens were consulted, and walking routes and the local footpaths searched. It turns out that the carer handed the dog over to the groomers and either didn’t tell dad or he didn’t remember – he simply told us all that she was missing. When she was returned later he couldn’t work out how she had got back.

This brings us to the fourth strand of the problem – the care agency is no longer to able to provide the help that we ask for. Firstly, they simply don’t have enough carers on their books to cover the visits that we have requested, and dad regularly has to get up without help or put together a meal (usually cold, and sometimes out-of-date) if the carer is scheduled too late for his mealtime. Secondly, the communication between the administration side and the carers is somewhat chaotic and so far this has meant that dad missed a flu jab appointment and two chiropody ones. These are the ones we know about. In addition the finance department cannot sort out their invoicing and cashed two payments for the same invoice on one occasion.

Some of these problems are typical of care packages and others may relate to the agency we use, but they are not easy to identify or handle from between 200 and 3,000 miles away. Dad – here I can’t resist some writerly lingo – is an ‘unreliable narrator’, and it is hard to ascertain what is happening and why. It is time, surely, to consider other options.

So we are. We have interviewed a live-in care agency, spoken to other agencies about adding in care visits alongside our existing one, and, finally and in desperation, talked to the wonderful residential home that is local to me. They have previously offered a respite care bed but dad chose not to try it out. But maybe the winds of change are blowing as, for the first time ever, dad recently asked a question about what would happen (to the dog, of course) if he needed residential care. I think, deep down, even dad feels that sense of floundering.

It is so, so, sad. I think I am writing this just to clear the whole, unhappy, situation out of my head. We have tried to gently help dad understand that, what with the ‘lump in his bladder’ (the ‘C’ word is another letter-word that he cannot remember or accept applies to him) and the advancing nature of ‘confused-dot-com’, he maybe needs more care that we can arrange at home.

The tracks are coming to an end, and we would like to bring that train into the station safely if it is at all possible…

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