Heidi Levitt and her husband Charlie Hess have collaborated on WALK WITH ME, a tender, love-filled documentary covering the first four years of their learning to live as caregiver and patient.
I took care of my father for several years before he passed at age 91. Being a caregiver is exhausting. Watching my father waste away and finally pass away before my eyes was traumatizing. You never really recover.
My family is in a version of this now. My dad is 99(!) with no memory loss, but his 94-year-old wife, my stepmother, is somewhere midstream. Since my brother and I do not live in the city where our dad is, we are fortunate to have found a caregiver who has taught me so much about how to create a gracious and dignified life for two very old people, one of whom cannot recall conversations from an hour prior. My stepmother will decline in this next year or so, and then we will have to adapt. There is so little support for families and caregivers. It’s as if we are meant to disappear. But my dad is still engaged with life and my stepmother still has enjoyable experiences. And they still share good times together. In a prior time we would all be living together, but now this doesnt happen. Some friends have talked about a kind of communal living experience, more humane and compassionate than current institutions. Thanks for sharing this very important post.
Even if families would all live together, the particularities of Alzheimer’s are intense. But yes: would be easier, if our society lived that way. And if our government would deign to acknowledge the 7 million currently living with dementia and the toll it takes on their loved ones.
Where I live, in BC, Canada, there is government subsidized long term care, which is used by people with dementia. It costs 80% of your income, with no obligation to sell assets.
In the US there is Medicaid supported care but you have to spend all your assets to get it. This can leave the spouse destitute.
There’s a good series at the NYT called “Dying Broke” that describes it.
I'm looking forward to watching the interview with Heidi, but in the meantime, thanks for this really important story and for letting us know that the doc exists. I hope I'll get to see it soon.
I think we need to have a real conversation about the ability for people to be able to euthanize themselves like they do at Dignitas. You have to be lucid enough to know what you’re doing but with a clear dementia diagnosis of this is going to get exponentially worse. Do any readers here really want to get into the feces throwing stage and have that be how you are remembered? Oh, and do you want to drain them of their money, health, and wellbeing?
I totally agree Route66Gal. My mom slowly wasted away from dementia over a period of 5 years. She lost the ability to feed herself, toilet herself, walk, talk, recognize anyone. It was awful. She would've been horrified if she was cognizant of how she ended up. I do not want that for myself. I read Amy Bloom's "In Love" about her husband's dementia and decision to end his life at Dignitas. The U.S. needs more options like that. Now.
I loved that book. Unabashedly. But it is also controversial in Alzheimer's circles, especially in caregiver support groups. Do I think people who want to end their lives, given such a diagnosis, deserve to do so? Absolutely. But I also do not think this disease offers a one-size-fits-all solution.
Agree, there certainly is no one-size-fits-all solution. The moments you describe below about Bridget are beautiful and rightfully treasured. My mom had a few of those moments, but was also completely bedridden and incapacitated. We kept her alive and very well taken care of for five years, but, in my opinion, it was no kind of life. I know she wouldn't have wanted it if she was able to tell us so. And I know I certainly don't want it and have specified as much in my will.
But of course, it's a very personal decision and it's everyone's right to choose what they want their health plan to be. I just wish the U.S. was less afraid of death and would get off this "keep them alive at all costs" mentality.
Thank you, as always, for bringing attention to this. You're a gem.
Yeah, I think there's a huge difference, too, between early onset Alzheimer's and more usual one that happens in later years. Bridget still goes on long walks every day with her caregiver. It's a conundrum when you still have young kids. Anyway, it's a horrible disease. Just horrible.
I know that would be my choice, given this diagnosis. And I wish it were a possible choice for us in the U.S. without having to fly to Switzerland. But I also see the daily moments of intense joy my partner's wife experiences, whether that's dancing with us, singing lyrics to songs she used to know, eating a good meal, or taking a walk outside. She even, on occasion, finds an odd sense of humor. One moment stands out in particular: she was walking down the stairs with her caregiver, and Townsend said, "Hey, Bridget, it's a beautiful day today!" And, without missing a beat, she started to hum the tune to, "It's a beautiful day in the neighborhood" from the Mr. Roger's show. With kind of a wink and a smile, as if she were in on the joke. Then she laughed. She has end stage Alzheimer's at this point, but she and her impish spirit are still "in" there somewhere, and she never expressed a desire to end her life before things got really bad, so we continue to make that life and her as comfortable as possible.
I took care of my father for several years before he passed at age 91. Being a caregiver is exhausting. Watching my father waste away and finally pass away before my eyes was traumatizing. You never really recover.
Oh, Amy. Yes. It’s a lot.
My family is in a version of this now. My dad is 99(!) with no memory loss, but his 94-year-old wife, my stepmother, is somewhere midstream. Since my brother and I do not live in the city where our dad is, we are fortunate to have found a caregiver who has taught me so much about how to create a gracious and dignified life for two very old people, one of whom cannot recall conversations from an hour prior. My stepmother will decline in this next year or so, and then we will have to adapt. There is so little support for families and caregivers. It’s as if we are meant to disappear. But my dad is still engaged with life and my stepmother still has enjoyable experiences. And they still share good times together. In a prior time we would all be living together, but now this doesnt happen. Some friends have talked about a kind of communal living experience, more humane and compassionate than current institutions. Thanks for sharing this very important post.
Even if families would all live together, the particularities of Alzheimer’s are intense. But yes: would be easier, if our society lived that way. And if our government would deign to acknowledge the 7 million currently living with dementia and the toll it takes on their loved ones.
Where I live, in BC, Canada, there is government subsidized long term care, which is used by people with dementia. It costs 80% of your income, with no obligation to sell assets.
In the US there is Medicaid supported care but you have to spend all your assets to get it. This can leave the spouse destitute.
There’s a good series at the NYT called “Dying Broke” that describes it.
Of course we pay higher taxes here.
Thank you for sharing this, Deborah. Made me tear up and ask myself, would I do this for my partner?
Thank you for this lovely note. xx
I'm looking forward to watching the interview with Heidi, but in the meantime, thanks for this really important story and for letting us know that the doc exists. I hope I'll get to see it soon.
I think we need to have a real conversation about the ability for people to be able to euthanize themselves like they do at Dignitas. You have to be lucid enough to know what you’re doing but with a clear dementia diagnosis of this is going to get exponentially worse. Do any readers here really want to get into the feces throwing stage and have that be how you are remembered? Oh, and do you want to drain them of their money, health, and wellbeing?
I totally agree Route66Gal. My mom slowly wasted away from dementia over a period of 5 years. She lost the ability to feed herself, toilet herself, walk, talk, recognize anyone. It was awful. She would've been horrified if she was cognizant of how she ended up. I do not want that for myself. I read Amy Bloom's "In Love" about her husband's dementia and decision to end his life at Dignitas. The U.S. needs more options like that. Now.
I loved that book. Unabashedly. But it is also controversial in Alzheimer's circles, especially in caregiver support groups. Do I think people who want to end their lives, given such a diagnosis, deserve to do so? Absolutely. But I also do not think this disease offers a one-size-fits-all solution.
Agree, there certainly is no one-size-fits-all solution. The moments you describe below about Bridget are beautiful and rightfully treasured. My mom had a few of those moments, but was also completely bedridden and incapacitated. We kept her alive and very well taken care of for five years, but, in my opinion, it was no kind of life. I know she wouldn't have wanted it if she was able to tell us so. And I know I certainly don't want it and have specified as much in my will.
But of course, it's a very personal decision and it's everyone's right to choose what they want their health plan to be. I just wish the U.S. was less afraid of death and would get off this "keep them alive at all costs" mentality.
Thank you, as always, for bringing attention to this. You're a gem.
Yeah, I think there's a huge difference, too, between early onset Alzheimer's and more usual one that happens in later years. Bridget still goes on long walks every day with her caregiver. It's a conundrum when you still have young kids. Anyway, it's a horrible disease. Just horrible.
I know that would be my choice, given this diagnosis. And I wish it were a possible choice for us in the U.S. without having to fly to Switzerland. But I also see the daily moments of intense joy my partner's wife experiences, whether that's dancing with us, singing lyrics to songs she used to know, eating a good meal, or taking a walk outside. She even, on occasion, finds an odd sense of humor. One moment stands out in particular: she was walking down the stairs with her caregiver, and Townsend said, "Hey, Bridget, it's a beautiful day today!" And, without missing a beat, she started to hum the tune to, "It's a beautiful day in the neighborhood" from the Mr. Roger's show. With kind of a wink and a smile, as if she were in on the joke. Then she laughed. She has end stage Alzheimer's at this point, but she and her impish spirit are still "in" there somewhere, and she never expressed a desire to end her life before things got really bad, so we continue to make that life and her as comfortable as possible.
We have MAID in Canada but you have to be of sound mind.
You can understand the reasoning.
Great interview! I look forward to seeing Heidi's film. Have you seen Seth and Lauren Rogen's film, Taking Care?
So excellent!