"Care of my mum"

About: Mid Argyll Hospital / General Medicine Mid Argyll Hospital / Gynaecology

(as a carer),

my story is very intricate as there are several elements to consider. I'm not quite sure where to begin.

My mother has end stage cancer but also had a diagnosis of dementia. Unfortunately I was told by the team(MDT) that I could not look after her in her own home and agreed that the best place for her was a care home. I thought I was doing the right thing.

Having settled my mother on the first day by the second day I was informed that she had not had a good night and had fallen. I was assured it wasn't serious.

From that day on it just got worse, the problems just went on and on. Mum was diagnosed with a UTI. She was given a course of antibiotics, it was worse after three days and the antibiotics were changed. My mum had also been put on something for agitation, she was on a number of other medications.

All through the next few days and weeks they kept telling me my mum was disrupting the home due to her behaviour so they put her on another sedative. I tried to tell them including the doctor that my mum was in pain and if they would stop looking at my mum as dementia patient with behavioural problems and saw her for what it actually was - cancer and lack of required level of analgesia then her behaviour would actually improve.

It took the doctor quite a while to come round to listening to my pleading but eventually put the mophine up by another 10mg to 40mg twice a day. Within another week or so the same behaviour started, they then realised that the care home staff were unsure if mum was getting the required amount as she would push them away.

The doc agreed with me that she should now have a patch.

After all this time(four months)my mother is now a poor wee soul, she can't wash/feed/speak/drink/dress/walk properly, these are just some of the things my mother can no longer do for herself.

I felt that when my mum walked through the doors of the care home she would be cared for but four months down the line if feels as if being in the care home has accelerated my mothers' dementia to a point that has robbed me of her last months.

My query, what can I do about this and how will I be able to stop anyone else having the same experience

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Response from Maimie Thompson, Head of Public Relations and Engagement, Chief Executive's Office, NHS Highland

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This is a heart-wrenching story and I am not surprised you dont know where to start. To see your mum lose her independence like this in a matter of months, and to feel so powerless to do anything is something none of us would want for our loved ones. So can I just start by saying how really sorry I am that this has been your experience.

While NHS Highland does not manage Care Homes across Argyll & Bute - we do manage them in the Highland Council area - and only yesterday our Chief Executive was meeting with GPs to see what more we need to do support people to manage people at home. including complex cases. In your case I think our starting point for reflection then has to be the advice you received to put your mum into a home and what support there was for you and your mum to have looked at all the options. Is this really what you wanted?

I wonder would it be helpful for you to speak to someone in NHS Highland so we can work through this together? If we were able to speak I would then be able to identify who locally would be best to listen and respond.

You can email me at maimie.thompson@nhs.net or phone me on 01463 704722. I don't know if it will help you but it might help us to understand.

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Response from Maimie Thompson, Head of Public Relations and Engagement, Chief Executive's Office, NHS Highland

picture of Maimie Thompson

Dear Samjo

Thanks for getting in touch. Having now chatted with you I have a better idea of how we might look into this. I will speak to colleagues in Argyll and Bute and then will commuicate directly with you via phone or email.



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