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'If I don’t know how can I best care for him?' - Lynn's Story

Rick was diagnosed with Alzheimer’s in September 2014, he was 72. He had no other medical conditions. The diagnosis was fairly quick once I got him to the GP. He was seen by the memory clinic, scoring a very low 3 on the test. He was settled onto Donepezil and discharged back to the care of the GP. There have never been any follow ups of his Alzheimer’s from Memory Clinic or the GP. No further measure of his cognitive decline.

He then had a stroke in April 2016. At this point Vascular Dementia was suggested to me as being present but there was a real reluctance to confirm it. He couldn’t have the 6 weeks rehabilitation as he had dementia. They said they couldn’t set targets and I did too much for him which made me feel it was my fault until I was advised by an Occupational Therapist (part of the stroke follow-up team) that in his professional judgement Rick should not be left alone.

Fortunately I only worked part time and was largely home based but it’s a tall order. I was also part time carer for my Mom, 92 also with Alzheimer’s, visiting 3 times per week to supplement her care package. We were referred to Age UK by the memory clinic and I arranged for Rick to have a sitter from them once a week as well as a local day care centre that I found via google initially one day per week then two.

He had a seizure in June 2017 on the day we were due to move Mom into a care home. I was told he wouldn’t be put on anti-seizure medication at this point but they would if he had a second seizure. I refused to take him home from hospital when first told to as at this point I had already been waiting for our Local Authority Assessments nearly 3 months as I had self-referred us at the end of March 2017. I knew there was a significant change.

I went in to the hospital one day armed with the Power of Attorney and my passport to insist on seeing his brain scans to try and get an understanding of what the situation was – he is my husband, I am his main (only) carer. If I don’t know how can I best care for him? He eventually came home when some rails had been fitted and a carer package put in place for am and pm calls for a week or two whilst I sorted out a care package for us.

It did not work out and I could no longer care for him at home and he went into a care home in July 2017, initially for respite. In the home we had a visit from a Psychiatric Nurse – GP arranged it due to my many calls to various services – she reviewed his records and told me he has “complex vascular issues” – hospital had said much the same. She did support my decision regarding the care home.

Our local Healthwatch in July 2017, just before he went into care, asked for lived experiences of our local hospital and this was my tweet in reply:

“emergency treatment excellent, day to day care patchy, discharge support confusing and chaotic, follow up non-existent”

Perhaps, on reflection, this should have been “follow up very limited” The tweet applies to both times he was hospitalised after his diagnosis I have to say that A&E, and the ambulance service, have always been excellent – on both occasions they were waiting for us – in particular when we got there following the stroke. He had the clot busting drug which worked wonders.

At the end of November 2018 he had another seizure. I don’t think the carers had seen one before – and like me when they saw it they feared the worst. They rang 999 and he was taken to our local hospital.  Eventually they said he was going for assessment to Elderly care unit. Here they checked that he could mobilise. Once off the bed he wouldn’t sit down so it was hard for the doctor to do the checks needed.

The doctor then said he should stay on the new tablet and the donepezil but come off the clopidogrel and the atorvastatin. I asked why as they were to prevent further strokes. Quality of life the doctor said with a bit of a shrug.

The care home notifies the GP of the situation but they don’t want to come to do a medication review as it’s not due until May. GP is rung again and does come out but over rules hospital doctor and says to stay on all medication. “for now” – perhaps, he says, if he was 80 he’d stop it.

Key points for me –

o Why would one doctor say stop and the other carry on with clopidogrel and atorvastatin – neither wrong probably but which one is right or what is best? There was no real discussion of this – no explanation to me – I want to know, I want to understand (whatever and however bad it may be) – complex vascular issues? I was excluded from the medical aspects.

o Let carer straight into A&E

Follow up – very limited in several respects:

o He wasn’t allowed the 6 weeks rehabilitation after the stroke or the first seizure – after the stroke in particular – because of his dementia and because I “do too much for him”

o No follow up on his Alzheimer’s and vascular dementia whatsoever

o Things said to me that at time you can’t take it all in – need someone to pull it all together

To end on a positive note both Rick and Mom are in lovely care homes. I cannot fault the staff; management; carers; cleaners; who go above and beyond. For them it’s not just a job – they care. Both are settled, happy. Both homes are pleasant and lively, welcoming and supportive of me. Care homes get a bad press but there’s lots of good out there. And lots of NHS staff and others working their socks off.

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