While I am too old to be caring for an older generation living with dementia, I appreciate several dimensions of this discussion within my current life, which is still prominently intertwined in caregiving.
When about ten years ago I found myself caring for a beloved with extreme, consistently symptomatic mental illness, someone I knew who had faced this challenge before me told me about NAMI, and my husband and I immediately signed up for a Family-to-Family course, without which we would have been clueless caregivers reading as fast as we could. NAMI is one model for providing both support and vital information when one finds a precious fruit has rolled far in some respects from the tree, as Andrew Solomon might describe it.
Another point in this post that I have found central in my life relates to how to help explain a disabled person to professionals serving them as well as to others interacting with them. I am regularly in the position of needing to convey information for a little one who is globally disabled and cannot speak. If he is not actually present and I need to discuss his situation, I typically see a great dark cloud pass through the listener's eyes as if the vision of him forming in their minds is one of unrelieved tragedy. So I always show a photo upfront, as soon as I see those dark clouds forming in front of me, of that beautiful, smiling little one with the big glasses and blond curls.
It absolutely does matter how people see the person who needs a lot of care.
My husband passed away from early onset Alzheimer’s disease, frontotemporal dementia, and aphasia in mid-June at age 61. He was loving, smart, athletic, funny, and kind. Eleven months prior I had quit my job to become his full time caregiver. Over the past few years we’ve taken snippets of video while on a walk, vacation, or in the midst of ordinary activities. I treasure those memories as captured on video. They have proved to be helpful for me in several ways. One, they caught a moment in time and helped me to see how my husband’s baseline was shifting as his disease progressed. When you are in the midst of caring for someone, it’s sometimes hard to see the changes (behavioral, emotional, physical, mental, and spiritual) in your loved one however videos reflect that reality at a specific moment in time. These “snapshots” proved to be invaluable when meeting with his neurologist and other doctors. Secondly, now that my beloved is gone, those same videos are precious. Being able to see his beautiful smile and face while hearing his voice and laughter are helping me to heal.
I’m honored and grateful that I was able to walk him home. Despite his cognitive decline, Lane’s essence remained: loving, kind, and playful. Yes, there were difficult moments which brought me to my knees, and yet, his courage, strength, and love kept me going.
Your family’s choice to move and become part of your father’s caregivers is brave. Remember, though, to carve out moments to care for yourself. I didn’t do that often enough. It’s a tricky balancing act, at times. I wish you the very best as you and your family continue to navigate this unfamiliar terrain each day. I hope you find blessings and many moments of joy and peace.
P. S. I met you at Parker Palmer’s home 14 years ago. His wife Sharon is my mom.
You're just nailing this, Courtney. I say this as one who lived with his mother-in-law the last ten months of her life. Her initial diagnosis was six months or less. Hospice came in. They thought three weeks. We eventually had three last suppers for her, Thanksgiving, Christmas, Valentine's Day, Mother's Day, and her birthday. My wife and I lived with her from Sunday evening until Friday morning (because we could: we're both retired). A caregiver came in every Friday and "stayed" with Mom until one of her out-of-town children arrived to care for her over the weekend. This particular arrangement allowed her to fulfill her one dream: to die in her own home. It also improved the quality of her life. She hadn't seen so much of her children in 40 years or more. After the holidays, I found myself dreading returning to my mother-in-law's home every Sunday evening. I mean, we were convinced she would have died by this point. One day, as I was helping her with compression socks, her foot was squarely in my chest. She said in her sweet, gentle way, "Thank you, Robert, for helping me with this." It was as if a bolt of LOVE shot down her leg into my heart. It melted me, dissolving resistance and resentment. I never had a problem returning to her home on Sunday evenings. It is the gift she gave me before she died. What a gift!
Wow, that moment is so crystal clear and gorgeous. I love it. They do hit you with those bolts of love, don't they? I've never heard of an arrangement like this for elder care. Reminds me of the nesting approach to divorce. How interesting. Thanks for sharing.
Oh Courtney, I am so drawn to your writing and stories about your dad because it is wildly reminiscent of my own journey with my dad. The podcast was beautiful. I wept through it - for your family, for your dad, for your journey, and in a way, for the weird heart aching beauty that dementia can bring in the quiet moments at the end of the day, when you’re able to reflect. My prayers are truly with your family, even though we’ve never met. You’re doing such a good job navigating this road. Some days feel so so hard - the adult daycare description just floored me. I know exactly what you’re talking about.
There is an organization called REMO https://remo.health/ This organization was started by 2 lovely men (IT person/MD) who are passionate about how to support and help caregivers. I was early in the development (only sharing of my story and struggles) of this company while trying to navigate helping my husband, myself and others to try and navigate the challenge of caregiving. Love Mary
Thanks so much for your incisive interview! I’m ordering AA’s book because it might apply to our two sons’ care of Sharron and me (ages 85 and 86 respectively) in the near future. This book could easily provide an excellent guide to what’s ahead.
In the meantime, I want to extend sincere sympathy to those of you who have given or are now serving as indispensable caregivers. DD
Oh DD, tell your sons I will be here for them when the time comes, and that I would be honored to take my "shift" in care for someone who has cared for my spirit and mind so deeply over the years. Miss you!
This is such a valuable post. I just spent 21 days with my sister as her home hospice caregiver. There is so much in your interview, Courtney, that reflects my experience -- the necessity of deep breathing, for sure, the uncertainty, the shape that advocacy can take -- and things that I certainly would have benefited from hearing five weeks ago. I would add to the idea of using your phone's camera: use your phone's "Notes" app or "Voice Memos" to capture your own observations, snippets of conversation with the loved one, notes from the medical or hospice providers, etc. I kept both a written notebook and my Notes app. These records were invaluable for future conversations.
Thank you again for your honest reflection and sharing. This resonates with me in a different way because I am caregiver for my aging husband. I am not aging as fast as he is and the challenges of caregiving for this loved one are similar. I find myself fighting resentment; I don't have enough support network because our children all live miles away; caring deeply about his quality of life but struggling to remember mine is important also. Very similar to your journey in many ways and your writing has helped me reset my thinking and continue on with this very important work. Deeply grateful!
Also Courtney - tonight I was listening to the latest episode of one of my favorite podcasts, Pure Nonfiction. It's about documentary films and this episode features Angela Patton and Natalie Rae Robison and their film "Daughters" (which you recommended on your Sunday 5 a few weeks ago). Imagine my surprise when Angela mentions you! She said you were the one who got her to do the Ted talk, which led to the documentary. So fun to have my worlds collide and to see fruits of the great work you are doing in the world.
This was a helpful and interesting interview. I want to add another strategy for times when you can't stop worrying: decide that you will spend as much time imagining things going well and how you want them to go as you do imagining the worst-case scenarios. Imagine your loved one doing well, having peace through the process; imagine yourself being strong and brave through the work and through the eventual loss. It makes sense to use your wonderful imagination to dream up good scenarios too!
While I am too old to be caring for an older generation living with dementia, I appreciate several dimensions of this discussion within my current life, which is still prominently intertwined in caregiving.
When about ten years ago I found myself caring for a beloved with extreme, consistently symptomatic mental illness, someone I knew who had faced this challenge before me told me about NAMI, and my husband and I immediately signed up for a Family-to-Family course, without which we would have been clueless caregivers reading as fast as we could. NAMI is one model for providing both support and vital information when one finds a precious fruit has rolled far in some respects from the tree, as Andrew Solomon might describe it.
Another point in this post that I have found central in my life relates to how to help explain a disabled person to professionals serving them as well as to others interacting with them. I am regularly in the position of needing to convey information for a little one who is globally disabled and cannot speak. If he is not actually present and I need to discuss his situation, I typically see a great dark cloud pass through the listener's eyes as if the vision of him forming in their minds is one of unrelieved tragedy. So I always show a photo upfront, as soon as I see those dark clouds forming in front of me, of that beautiful, smiling little one with the big glasses and blond curls.
It absolutely does matter how people see the person who needs a lot of care.
Wow, this is so beautifully written. I love the way you talk about disrupting the dark cloud.
My husband passed away from early onset Alzheimer’s disease, frontotemporal dementia, and aphasia in mid-June at age 61. He was loving, smart, athletic, funny, and kind. Eleven months prior I had quit my job to become his full time caregiver. Over the past few years we’ve taken snippets of video while on a walk, vacation, or in the midst of ordinary activities. I treasure those memories as captured on video. They have proved to be helpful for me in several ways. One, they caught a moment in time and helped me to see how my husband’s baseline was shifting as his disease progressed. When you are in the midst of caring for someone, it’s sometimes hard to see the changes (behavioral, emotional, physical, mental, and spiritual) in your loved one however videos reflect that reality at a specific moment in time. These “snapshots” proved to be invaluable when meeting with his neurologist and other doctors. Secondly, now that my beloved is gone, those same videos are precious. Being able to see his beautiful smile and face while hearing his voice and laughter are helping me to heal.
I'm so sorry for your loss, Christine, and inspired by the way you showed up for your husband so fully. Sounds like a beautiful, hard journey.
I’m honored and grateful that I was able to walk him home. Despite his cognitive decline, Lane’s essence remained: loving, kind, and playful. Yes, there were difficult moments which brought me to my knees, and yet, his courage, strength, and love kept me going.
Your family’s choice to move and become part of your father’s caregivers is brave. Remember, though, to carve out moments to care for yourself. I didn’t do that often enough. It’s a tricky balancing act, at times. I wish you the very best as you and your family continue to navigate this unfamiliar terrain each day. I hope you find blessings and many moments of joy and peace.
P. S. I met you at Parker Palmer’s home 14 years ago. His wife Sharon is my mom.
Oh my goodness! Thanks for reminding me of our connection. Your mom is an inspiration in so many ways.
You're just nailing this, Courtney. I say this as one who lived with his mother-in-law the last ten months of her life. Her initial diagnosis was six months or less. Hospice came in. They thought three weeks. We eventually had three last suppers for her, Thanksgiving, Christmas, Valentine's Day, Mother's Day, and her birthday. My wife and I lived with her from Sunday evening until Friday morning (because we could: we're both retired). A caregiver came in every Friday and "stayed" with Mom until one of her out-of-town children arrived to care for her over the weekend. This particular arrangement allowed her to fulfill her one dream: to die in her own home. It also improved the quality of her life. She hadn't seen so much of her children in 40 years or more. After the holidays, I found myself dreading returning to my mother-in-law's home every Sunday evening. I mean, we were convinced she would have died by this point. One day, as I was helping her with compression socks, her foot was squarely in my chest. She said in her sweet, gentle way, "Thank you, Robert, for helping me with this." It was as if a bolt of LOVE shot down her leg into my heart. It melted me, dissolving resistance and resentment. I never had a problem returning to her home on Sunday evenings. It is the gift she gave me before she died. What a gift!
Wow, that moment is so crystal clear and gorgeous. I love it. They do hit you with those bolts of love, don't they? I've never heard of an arrangement like this for elder care. Reminds me of the nesting approach to divorce. How interesting. Thanks for sharing.
Oh Courtney, I am so drawn to your writing and stories about your dad because it is wildly reminiscent of my own journey with my dad. The podcast was beautiful. I wept through it - for your family, for your dad, for your journey, and in a way, for the weird heart aching beauty that dementia can bring in the quiet moments at the end of the day, when you’re able to reflect. My prayers are truly with your family, even though we’ve never met. You’re doing such a good job navigating this road. Some days feel so so hard - the adult daycare description just floored me. I know exactly what you’re talking about.
There is an organization called REMO https://remo.health/ This organization was started by 2 lovely men (IT person/MD) who are passionate about how to support and help caregivers. I was early in the development (only sharing of my story and struggles) of this company while trying to navigate helping my husband, myself and others to try and navigate the challenge of caregiving. Love Mary
Thank you, Mary! I'm excited to check them out.
Thank you for this.
Thanks so much for your incisive interview! I’m ordering AA’s book because it might apply to our two sons’ care of Sharron and me (ages 85 and 86 respectively) in the near future. This book could easily provide an excellent guide to what’s ahead.
In the meantime, I want to extend sincere sympathy to those of you who have given or are now serving as indispensable caregivers. DD
Oh DD, tell your sons I will be here for them when the time comes, and that I would be honored to take my "shift" in care for someone who has cared for my spirit and mind so deeply over the years. Miss you!
This is such a valuable post. I just spent 21 days with my sister as her home hospice caregiver. There is so much in your interview, Courtney, that reflects my experience -- the necessity of deep breathing, for sure, the uncertainty, the shape that advocacy can take -- and things that I certainly would have benefited from hearing five weeks ago. I would add to the idea of using your phone's camera: use your phone's "Notes" app or "Voice Memos" to capture your own observations, snippets of conversation with the loved one, notes from the medical or hospice providers, etc. I kept both a written notebook and my Notes app. These records were invaluable for future conversations.
Thanks Puz. I'm so sorry for the loss of your sister. She was lucky to travel this life with you.
Thank you again for your honest reflection and sharing. This resonates with me in a different way because I am caregiver for my aging husband. I am not aging as fast as he is and the challenges of caregiving for this loved one are similar. I find myself fighting resentment; I don't have enough support network because our children all live miles away; caring deeply about his quality of life but struggling to remember mine is important also. Very similar to your journey in many ways and your writing has helped me reset my thinking and continue on with this very important work. Deeply grateful!
Such a hugely important conversation, Courtney! Thank you!
Also Courtney - tonight I was listening to the latest episode of one of my favorite podcasts, Pure Nonfiction. It's about documentary films and this episode features Angela Patton and Natalie Rae Robison and their film "Daughters" (which you recommended on your Sunday 5 a few weeks ago). Imagine my surprise when Angela mentions you! She said you were the one who got her to do the Ted talk, which led to the documentary. So fun to have my worlds collide and to see fruits of the great work you are doing in the world.
This was a helpful and interesting interview. I want to add another strategy for times when you can't stop worrying: decide that you will spend as much time imagining things going well and how you want them to go as you do imagining the worst-case scenarios. Imagine your loved one doing well, having peace through the process; imagine yourself being strong and brave through the work and through the eventual loss. It makes sense to use your wonderful imagination to dream up good scenarios too!