I'm working on a post about dementia so did a search here in Substack and your writing came up. You write beautifully and honor your dad's life and your family's experience. As someone who also had a parent with dementia, I take comfort that we can share our experience here together.
Caring for and about a loved one with dementia is possibly the most difficult, most emotionally-taxing things I've ever experienced. You do lose them twice- once when they're no longer the person they once were and again when they die. Thank you for sharing your experience. Sharing it helps at least try to comprehend it and perhaps ease some of the pain.
I appreciate the vulnerability and the capturing of this period. My mom has vascular dementia, an unintended gift from a serious hospital stay. She lived, and many years later, we can identify some of that wonky wasn’t in fact being forgetful.
Dementia is a complex and cruel disease. My uncle in law passed from complications stemming from it. My great aunt also had symptoms if not it fully. Will I? Meh, I’m already on the genetic dump truck of ailments where any of which could be the one. My mom though… I didn’t take her symptoms seriously. Once grief upon grief showed up, I was the one trotting her to PCP appointments. The masking period ended. She remains feisty and coherent enough.
A nurse practitioner, bless her, shared her story with dementia to help me grasp what might come. I circle back to it often. One parent yelled at the nurse often. The other parent felt she was victimizing them and took her to court for damages. The parent didn’t win and became even more argumentative. And in the various explanatory books, it states one key mental idea of safety. Those afflicted want it, and don’t always believe you, the idea, etc. anymore. There is pride. There is fear. There is their own version of sadness and grief. This isn’t how anyone wants to say goodbye.
I hate it. I also accept it. It could’ve always been better or worse. My therapy skills says radical acceptance works. In this instance it does - to be more patient, try to go with the flow, fight the urge to have my mom stop trying to approach strangers’ kids. 😅 She loves babies and toddlers. Every moment is a blessing.
Tracy, thank you for sharing these thoughts. We believe my dad had vascular dementia, too. I am sorry to hear about your mom getting it, as well as the experience in the extended family. I totally appreciate what you are saying about radical acceptance. The methods are very consistent with Western Buddhist principles, which I agree with. The practice isn't always easy, but it is the right path.
Thanks for sharing your story about your dad - I have been through something similar.
I often think that dementia is like an onion and is the peeling away of the layers back in time. That is, the person regresses as their more recent memories (and skills) fade. Sadly, we only notice these changes when the coping mechanisms fail, and we become aware that there is a problem, by which time it is often too late.
Steve - this was really powerful. Thank you so so much for being vulnerable and sharing.
I'm working on a post about dementia so did a search here in Substack and your writing came up. You write beautifully and honor your dad's life and your family's experience. As someone who also had a parent with dementia, I take comfort that we can share our experience here together.
Caring for and about a loved one with dementia is possibly the most difficult, most emotionally-taxing things I've ever experienced. You do lose them twice- once when they're no longer the person they once were and again when they die. Thank you for sharing your experience. Sharing it helps at least try to comprehend it and perhaps ease some of the pain.
I appreciate the vulnerability and the capturing of this period. My mom has vascular dementia, an unintended gift from a serious hospital stay. She lived, and many years later, we can identify some of that wonky wasn’t in fact being forgetful.
Dementia is a complex and cruel disease. My uncle in law passed from complications stemming from it. My great aunt also had symptoms if not it fully. Will I? Meh, I’m already on the genetic dump truck of ailments where any of which could be the one. My mom though… I didn’t take her symptoms seriously. Once grief upon grief showed up, I was the one trotting her to PCP appointments. The masking period ended. She remains feisty and coherent enough.
A nurse practitioner, bless her, shared her story with dementia to help me grasp what might come. I circle back to it often. One parent yelled at the nurse often. The other parent felt she was victimizing them and took her to court for damages. The parent didn’t win and became even more argumentative. And in the various explanatory books, it states one key mental idea of safety. Those afflicted want it, and don’t always believe you, the idea, etc. anymore. There is pride. There is fear. There is their own version of sadness and grief. This isn’t how anyone wants to say goodbye.
I hate it. I also accept it. It could’ve always been better or worse. My therapy skills says radical acceptance works. In this instance it does - to be more patient, try to go with the flow, fight the urge to have my mom stop trying to approach strangers’ kids. 😅 She loves babies and toddlers. Every moment is a blessing.
Tracy, thank you for sharing these thoughts. We believe my dad had vascular dementia, too. I am sorry to hear about your mom getting it, as well as the experience in the extended family. I totally appreciate what you are saying about radical acceptance. The methods are very consistent with Western Buddhist principles, which I agree with. The practice isn't always easy, but it is the right path.
Thanks for sharing your story about your dad - I have been through something similar.
I often think that dementia is like an onion and is the peeling away of the layers back in time. That is, the person regresses as their more recent memories (and skills) fade. Sadly, we only notice these changes when the coping mechanisms fail, and we become aware that there is a problem, by which time it is often too late.