Midlife Unfiltered: The Season Of Me
In this very open and honest conversation, Barbara shares with me her remarkable story of caring for 5 loved ones who had dementia. Her mother-in-law, her mum, a dear aunty, her aunty’s close friend, and her husband Peter. She wanted to share her story with you so that if you’re also caring from someone with dementia it might give you some light in the darkness. If you are yet to care for someone with dementia, her story might shed some light on what it can be like. Personal stories give us a richness, a door to deeper understanding. Awareness about dementia is a focus for this podcast. Sharing stories like Barb’s help to bring that in a very relatable way. Beyond the medical and research facts. Real life. Dementia Life. Thank you Barb for your care, your devotion and courage to speak your story for others. Join Us As We Talk About… Peter’s Story Barb gives us insights into what it was like caring for her much loved husband Peter, the clues that dementia was presenting itself and how the condition progressed. Peter was diagnosed with Alzheimer’s at 65 and lived with it until he passed away at 76. Getting that diagnosis took two years. It was Barbara’s persistence, shaped by her care of four loved ones previously with dementia, that finally got that diagnosis. She describes the early signs, some that were easy to miss if you didn’t know what you were looking for. Barb knew. She’d seen some of them before. The many phone calls (sometimes 30 a day) Pete would make to her. The misplaced keys, forgotten meetings and the day Pete got completely lost driving a way home he was so very familiar with. That was the most confronting for Peter. The Masking One of the things Barb opens up about is how well Peter masked his dementia. He was very good at covering things up. His doctor couldn’t see what she could see. Colleagues at their car dealership weren’t ready to believe changes needed to be made in their business; but Barb could. Peter himself wanted to keep it a secret, which raised the painful question, ‘how much do you share, with whom, and when?’ Balancing his dignity and wishes against the practical reality of keeping him safe. That was hard. What Helped Barb shares some of the things that helped with these challenges. Reframing, not confronting. When it was time for Peter to stop driving, his doctor told him it was his eyesight that was making it unsafe for him to drive. Not dementia. Peter could accept that. He never would have accepted “you can’t drive anymore because you have dementia.” Finding the kind path to the same truth helps enormously. It maintains dignity and keeps things calmer. Loving understanding of family and friends - it helps to keep things calm which always helps. Confrontation does not. Keeping routines alive. Peter loved a glass of red wine and a beer. Rather than take that pleasure away, Barb switched to non-alcoholic versions. He never noticed. He was happy. (Unlike my Dad who knew! “This wine tastes sh#t.” I think it was his Italian DNA that gave him the clue. In the end, he didn’t even want it.) Peter also kept playing table tennis almost right up until the end. A computer on a desk in his room made the space feel familiar. Small things that brought familiarity and comfort. On that computer he could see videos and photos of the family. Patience. Patience. And More Patience. Barb talks honestly about what it takes to answer the same question as though it’s the first time, every, single, time. Easier said than done. But keeping things calm, she says, was everything. Music. Barb shares how profoundly enjoyable and soothing music was for Peter. So much so that she did a course in how to use it therapeutically, for Peter and for others in the care facility he was eventually placed in too. The Nature of Peter’s Care Over Time. Barb talks about how Peter’s care changed over those 11 years. From being at home full-time, to day care growing from one day a week to four, their daughter covering another day. Eventually Peter moved in to full-time residential care for his last 15 months with his final days, his palliative care at home where he passed away. That transition came after Barb had a serious accident and badly damaged her leg. She also opens up about the physical reality of caring for someone who has become incontinent and how that tipped the scales. It was too much to handle. Respite care, was a turning point - 2 weeks became 3. It gave her room to breathe and recover. It helped her to see clearly that Peter was being looked after beautifully and that what she was able to do given her injury, was not as complete for him. That perspective is something you can only appreciate when circumstances change and the care you’re used to doing at home is no longer possible to do. [Personally I have had quite a few people say to me that “I’d never put my partner in a home”. The stigma around that I find is still so very apparent, it’s hurtful. No one wants to wish or wants their loved one to be placed in a care home. To take them from a home they love being in, that you share together. That was one of the hardest days of my life, my Mum’s life, the day Dad went into full-time residential care. But after 3 stays in hospital for Mum, we couldn’t risk her health declining rapidly as well. It’s often the kindest thing to do. Doesn’t make it easy, but it’s kind. Dad was looked after so very, very well, just like Peter was]. Self-Care Is Essential Barb talks openly about how she came to understand that taking care of herself was essential too. How self-care for her was one day a fortnight. A non-negotiable massage. Planning Ahead — While You Still Can One of the most valuable parts of our conversation is when Barb talks about the importance of getting ‘your ducks in a row’ early. The legals like enduring power of attorney and medical wishes. Honest conversations about end-of-life preferences while the person you love can still be part of them. In Australia, dementia patients are not eligible for voluntary assisted dying, so these decisions need to made before dementia progresses too far. Barb also shares how she contacted the palliative care team well in advance, in line with Peter’s wishes. How that preparation made his wishes a possibility. Those last five days were at home, surrounded by family. Three households moved in. Six adults, seven grandchildren. Food, music, singing and time with Peter. Together. So very precious. Thank you for sharing your story, Barb. And thank you for listening. If you’re a carer right now we want you to know that we see you. It’s so very hard. It’s lonely. It’s demanding. Much of what you do goes unnoticed, is under appreciated and under-valued. You give up so much. Our experiences though different, have similarities. We see you. We appreciate all that you do. The light in the dark does show up at times. Hold on to those precious moments. Got a dementia life story you’d like to share? I’d love to hear it. Email us at hello@midlifeunfiltered.com.au [hello@midlifeunfiltered.com.au] or send me a message. Sharing these personal stories matters. For dementia awareness. Those who live with it. And those who care for those who do. For all of us. Because in the not too distant future, perhaps even now, we will all know someone whose life has been touched by dementia. If you think there is someone in your life who would find this conversation helpful, please share it with them. Dementia awareness matters. Carer awareness matters. Thank you. See you next episode. Anita xx p.s. Barb vanishes in the end - the internets strikes again! This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit midlifeunfiltered.substack.com [https://midlifeunfiltered.substack.com?utm_medium=podcast&utm_campaign=CTA_1]
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