"Dementia affects every person differently"

About: Coventry And Warwickshire Partnership NHS Trust / Older people's mental health

(as a relative),

The Phoenix Club who are a fabulous organisation suggested I share my thoughts as a dementia carer.

It’s a fantastic place for me and my wife. I’m 81 and she’s 80. We have fun, laugh and talk to other carers and it does my wife lots of good talking to other ladies as she lacks female company these days.

There seems to be a 1 cap fits all approach when it comes to dealing with dementia when it affects every person differently. My experience goes back to my wife’s mother 15-20 years ago. She came to live with us until she died and dementia made her very nasty. She would rail against people.

My wife’s memory started to go 6 years ago. Initially she was diagnosed with a B12 deficiency, pernicious anaemia and an irregular heartbeat. She was given a 13 week cycle of a slow release injection and her condition always got worse at the end of the cycle. I kept on telling the doctors this but they never listened to me about this.

My wife eventually attended Myra House at Manor Hospital, Nuneaton was put on Donepezil Hydrocholoride to help her memory. She has been on the medication for 3 years. She started on 10mg taken at bedtime but would sleep during the day and had no inclination to do anything for herself unless I told her to. The doctor cut her dosage to 5mg, taken in the morning and over one year there was an improvement but then her aggression came in when she wasn’t getting her own way particularly in the evening so they put her on Risperidone 0. 5mg given in the evening which helped.

Then she got chest infections and was breathless which doctor said was a side effect of the Risperidone. They cut the dosage by half but there are no smaller pills available and so I have to cut the pills in half myself which is an inexact science. I asked the chemist for help with this but the facilities can’t cope and everything is left to the carers.

After twisting ligaments in her knee hanging out clothes, she didn’t give herself enough recovery time and ended up in a wheel chair. She wants to go out and go downhill to ‘go home’ but she gets out of breath after 10 yards. She doesn’t know where I am as she has bad eyesight and knows our address even though she’s confused about the location. She’s terrified of being on her own but doesn’t know who I am and thinks I’ve taken over her home.

Everything is so complicated to access, be that funding for attendance allowance, respite or befriending service. My son works in mental health and knows more than our allocated care worker and had to put her right. I have fought against respite as being left in a strange place won’t do her any good.

Now she’s going to Attelborough in Nuneaton for a week’s respite. We’ve never been apart since we were 19. I don’t know what I’m meant to do. Everything is bound up in dogma.

Our social worker was taken ill and everything stops. We were told Warwick has no befriending service (which would give my wife more female company) and then were told it did. They contacted us and asked us what degree of befriending was needed and that we needed our social worker for that when he had said we didn’t? We are still waiting after 3 weeks. Carers don’t have a clue and just disappear into thin air.

My wife has insight that she has problems but she doesn’t know what’s actually wrong with her. She is prone to chest infection and can have urinary tract infection and goes to the toilet 10 times. It plays havoc with the mind and is very uncomfortable and bad. One doctor told me they didn’t need a urine sample to have antibiotics and then another told me I did.

What am I supposed to do? My wife is very private. I can’t sit in there with her. She has a pathological fear of going to the doctors. 1 time we went with a chest infection and she was told to just rest and drink plenty. She was bad for 3 or 4 days and then the local surgery immediately gave her antibiotics for 3 weeks after. It makes you feel that the more they ignore you, the quicker the inconvenience of dealing with our problems will disappear.

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Response from Julia Williams, Assistant Director - Experience & Quality, Coventry & Warwickshire Partnership Trust

Dear Nadir4,

Thank you for taking the time and trouble to post your moving account, of your experiences, as a carer for someone suffering with dementia.

I have passed your story onto a representative for the Older Peoples Mental Health Services and we will get back to you in due course with a response.

Best wishes


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