January 2018: what it means living with dementia for me this month

a-voice

What is left out..

Moving to a new home and new GP surgery.  Moving Doctor’s surgeries is always fraught with problems of nobody knowing who you are, how you are, and your medical history.  Medication history has to include your doctors knowledge of you personally, especially when a new doctor can only read what has been written not what was left out.  So I see my new GP and talk to him about myself and my dementia.

I have always had my medication in a weekly blister pack given in four weekly lots.   So when my new blister pack is delivered there is a week at a time.  This means I have to be in my house every Thursday to receive a weeks dose of medication.  This is not acceptable to me to because it mean I cannot leave the house that day until the medication has been delivered.  I challenged this with the Surgery and the pharmacy and was told that the Doctor advised that I could only have one pack at a time – why?  Because I have Alzheimer’s.

What does this say about me?   1. I am incapable of taking my medication one pack at a time.  2.  My dementia is worse that it is.  3. My doctor has not listened to me or does not believe a word I say.

What does this say about the service in the area I live in now?  I have worked hard with my old local services to make things better for people with dementia.  It appears that in the north east of England the services fall way short of what they should do.  The disparity of quality of services across our country is abysmal quite frankly.  This is not about how much money a service has it is about how much training they have had in dementia awareness.

Incidentally, I had recently had an appointment with the Memory Clinic and the Psychiatrist (sadly) said that even the tests scoring are different from what I had been used to were not used, and that the service ‘here’ for younger people is poor.  I thank her for her candour.  I am no worse than my last tests, which means I am still very early on.  This for me is a relief to hear.  She left me with the usual that I will have the 6 monthly follow ups to see how I am doing, ‘sorry there is no support for you whatsoever’.

Hey ho, I can see that it may be an upward battle to get my GP up to date with how to include people with Dementia into surgery practises.

What is left out?  Knowing someone, putting down on paper that this person is capable of taking medication, they are at a very early stage and to treat this person as not yet needing the support of taking control of medication etc.

 

 

 

Author: Gill

I was diagnosed with Early Onset Alzheimer's in Dec 2012 aged 58 after 20+ years of memory and other cognitive difficulties. It was both a relief and a shock getting the diagnosis. But, I am determined to live a happy and productive life with this disease. Enjoy what I can do and push as much as I can physically, mentally and emotionally will always be my mantra :) My plan is to live simply, create a wildlife garden for birds and bees to enjoy when I can no longer garden.

2 thoughts on “January 2018: what it means living with dementia for me this month”

  1. It’s appalling. I keep hoping I will hear of improvements nationally, not just in small pockets where for some reason they do manage to do things better. Sounds like you will have go back into battle. Good luck

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