Having those difficult uncomfortable conversations
Dr. Carol Sargent
Creating a social shift where dementia and other disabilities are no longer seen as the end, but a new phase, in which a great deal of life can still be lived
I’ve been reflecting about how some aspects of life can be easier for single people living with dementia than people living with spouses, partners or families. That was certainly the case in our family.
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My mother-in-law, Iris, was widowed when my husband was 12 and lived by herself in a warden assisted bungalow until a month before she died. In contrast, my Mum lived with my Dad for over 50 years, nine years with dementia and then moved into a care home for the remaining three years of her life because living at home made her to anxious.
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My Dad loved my Mum to bits, and she was always her own person. However, when she was diagnosed with dementia, he wrapped her up in cotton wool, stifled her freedom to experience new things and to learn from her mistakes. He was too worried about keeping her safe and about having those difficult conversations about vascular dementia and what the future could hold.
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Iris was a very independent lady and my husband Gary was her only child. She made it very clear that she wanted to continue to do things her way and live by herself and that there would never be any discussions of any other option, even when she was diagnosed with dementia.
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Like many families on a dementia journey, we learnt most when we got things wrong. Nobody told us anything about the impact dementia has on a person’s senses. If we had known, perhaps we would have recognised just how important it was to have those discussions with Mum and Iris, so we could understand the confusing and mystifying changes they were experiencing with their senses. Then, perhaps we could have identified solutions that would have better supported them to live their best lives, rather than bumble our way along.
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All anybody spoke about was memory issues with dementia, and we did have some of those difficult conversations around memory. Indeed, one of the things my Mum found really helpful was journaling when life was challenging. I still look back at these from time to time, as they give me an insight into how somebody living with dementia deals with things life throws at them, and helps me remember to always consider how a person living with dementia can feel.
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In hindsight, because we lived so far away from Mum and Iris, were juggling jobs and bringing up two teenagers, I realise we didn’t put enough emphasis on having more of those difficult discussions. Our focus was always on helping with practical solutions around memory loss. We should have had more conversations as we started to work out other things beyond memory were impacting Mum and Iris’s quality of life.
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Iris, managed to live reasonably well on her own and although resistant she did accept help from carers when she reached that point. We managed this because she enjoyed their company and we introduced them as people who could take her out shopping or to take her on a visit to Southport, before she need their support with care.
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In contrast, things were much more challenging for my Mum and Dad, with my Dad becoming one of the statistics! A carer who put his needs behind those of the person he cared for. Dying within a month of a diagnosis of prostate cancer, when my Mum had only recently moved to a care home. ?
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I realise now if we had, put more focus on having those difficult conversations about how Mum and Iris had felt and sought more advice from experts on how to have these conversations effectively, things might have been a lot less stressful for all of us, but particularly for Iris, Mum and Dad.
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It’s these personal experiences coupled with my experience in taking ~1600 people on specialist dementia holidays that led me to set up our dementia travel advice service. I know anybody still living at home with dementia can still find freedom and joy through holidays and live their best lives.
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The key is having those difficult and uncomfortable conversations in a way that enables and empowers people to share their worries and barriers and identify solutions that they are willing to try.
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Would be great to hear other people’s experience of having those difficult and uncomfortable conversations, particularly around dementia?
As Iris’s son, there were times when I was frustrated, angry, scared of what I may find upon a visit. Do you notice a trend - it’s all about my feelings, not hers. Did I ever ask how she was feeling? No. Why? I can’t imagine the feeling when her doctor told her, in my presence, that we should go to the dementia clinic following a simple memory test. When my mum told the doctor “don’t be stupid it’s 1982” my heart sank (it was 2016). From that moment on I treated her differently. Conversations revolved around needs rather than wants and logic rather than emotion. In lucid moments there was a realisation of situations, but at other times there was confusion and disbelief. Holidays were put on the back burner. But why? She would have enjoyed a holiday like anyone else, an ice-cream at the seaside her favourite. It was my fear of the unknown of what might happen or would the facilities be good enough and the staff be patient enough and could I deal with “accidents” that stopped me. I regret that. All to often we protect those we loved with bubble wrap in their own bubble when we should encourage them to enjoy life on holiday in a supportive environment. It’s too late for me, but maybe not for you to take the plunge. Go for it!
Managing Director @ World Accessible Holidays | Vacation Planning, Travel Consulting, Disability Travel
10 个月Fabulous. A holiday always does you good and a well deserved rest was needed with all the hard work you do