The last two weeks have been a personal journey of heartache and challenge. After 54 years of marriage my parents are spending their second ever occasion apart. My mother was admitted to hospital a week ago and I visited to support my father in the MDT meeting.
One day last week he said "I,ve lost her" and he didn't mean she was dying, but that the last element of recognition and "finding herself through the fog " had gone. This is the hardest of all. Is this the time to look at a nursing home?
Well no, we are looking at a package of care of home , day centre and him continuing to love and care for her. A few days without her was a relief, he could sleep at night, eat what and when he wanted and find himself too. But a week on, he is a lost soul and almost pacing without her here. He has become a full time carer and the man he was is ,I hope only temporarily ,gone- lost within this role which could go on for years. We try to encourage him to take the help and to find things of interest for himself, but this is easier said than done, when someone else has been your life for 63 years. What we can do is be here, listen and hear and relieve the pressure.
Looking at my parents existence as a FN Scholar reiterates for me the fact that behind every person with dementia is a real person- someone who has achieved things in their life , full of interest and dynamism . We may not see that very often or at all, but that is who they are and they deserve the dignity and respect of lifelong heroes. Because each and every one of them is a hero to someone.
I had a teleconference this week with one patch of my work around possible investments in dementia which I could embrace and lead as a FN Scholar. I hope that my drive and belief in self management and preventing unnecessary admissions to Hospital will yield results. We discussed how to support people and their carers to remain at home, how to prepare yourself for three to six months ahead and what to do if the "what if" happens. People with learning disabilities have fantastic shared care plans ......we could adapt and enhance these for example.
It's interesting that whilst most people know about my mum, I lead and manage this project as I do every project and lead area I have. I'm as enthusiastic and committed to every element of my role as Director and vehemently believe that all of our services should strive to walk in the shoes of others and lead by example. And this is what I see every day.
We will have two new projects or pieces of investment in dementia care soon and I am excited to see what they are, but we could do so much more to meet those unmet needs. This requires a partnership approach and I think we,re on the way to achieving this so I am excited. My scholarship has focussed on raising the profile of dementia, looking at new services and me taking on areas outside if my comfort zone. So far so good - I'm well on my way to achieving this. And the contacts I've made via twitter have yielded exciting results. The first chapter of my personal journey has laid the foundations, now I need to start to design the building!
Get well mum - you,ll be home again soon
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