This might be helpful for caregivers--I am a nurse and there wasn't anything I couldn't do for a patient. BUT --I had to care for my parents when they were dying and I never thought I could provide that same kind of care for them. But, when you have to do it, you just do it. It was surprising-- protecting dignity isn't as hard as you might imagine. When someone is incredibly ill, their mind about that issue isn't the same. It is a little uncomfortable, but the efforts you make that indicate you are repectful (a towel covering, or some other minor adjustments-- looking away, being matter of fact) those efforts seem to be "enough."
I agree, Virginia. Taking care of some of the more personal stuff was much easier than I expected. I guess it's because you know that -- through this care -- you're helping the person.
I went through this with my brothers. As the only girl (and a professional nurse) a lot of my dad's caregiving fell to me, but the brothers kicked in with help as they were able. I made a point of including them in every decision through zoom calls. It was a little more work, but full transparency was important in the aftermath.
I arranged for us to be together in a hotel following my dad's death. A year later, I rented a very large house for us to stay together on the coast of Maine on the anniversary of dad's death and I provided all ameneties. I explained that I couldn't do that every year, but asked that we plan to meet each year after in a manner that met their own financial and social limits. We have done so each year and it has been wonderful.
TLDR-- make sure you have an easy plan immediately in place to continue your new found team identity. If you wait to set it in motion, it will get pushed aside.
When I was in college I got an internship in Florida and fast forward I moved there when I graduated after my boyfriend proposed in the airport at St. Louis. I lived nearly 40 years away from my family in Northern Illinois.
When my parents got older I finally got my husband to move back home. We bought a house with them in mind and two years later we welcomed them into our newly minted multi-generational home--complete with 2 masters, ours in the now finished basement.
I thought we would have them for at least a decade, but a year in Dad died suddenly and Mom followed 10 months later. We were devastated and honestly, still have those moments where it doesn't seem possible to have lost them so soon.
I could not stand being in the house, and we moved from Illinois to Northwestern Alabama to be close to Hubby's cousins. But we remain equidistant to siblings in Illinois and Florida.
Why am I am babbling on? Your piece just reminded me of the caregiver mentality which I loved because we never could have kids. And also brought back memories of how hard it was--the first time wiping your father's behind was one! Together, the good and hard, were so rewarding. I wouldn't change a thing, except to have them still be with us.
Oh yes, I've been unloading to friends about this same topic - and most definitely, we are in the "club-sandwich" generation. I'm learning that self care is critical for the well being of caregivers. A friend told me, "Just do your best and let God do the rest."
When Mel Brooks was asked, "Boxers or briefs?" his answer was "Depends!"
Amy, this essay is amazing. Heartfelt, relatable, deep, funny, thoughtful, brilliant. You are an incredible writer. You also sound like a wonderful part of your large, connected, all too human family. They are lucky to have you. Thank you for writing something that encourages all of us to seek to understand our families while truly being there for them.
You are surely exhausted. Take care of yourselves. On a lighter note my mother thought Depends were the greatest! She has been gone 20 years but I remember my siblings and I taking shifts to keep her comfortable at home. It was tiring but a blessing to be part of her leaving.
Hi, Amy. I'm coming to this edition of your newsletter late. Both parents developed Alzheimer's near the end. My stepdad took care of mom at home in South Fla. and I flew in once a month or so to help (I was still working then). When she started falling (he couldn't lift her) and wandering, she went into a lovely assisted living and later, a nursing home. We moved my (single) dad from Fla. to our home in NOLA, but after eight months he became erratic, uncooperative, and frankly, dangerous. He was also wandering and wouldn't be kept inside. Fortunately, there was a good assisted living in the neighborhood and he was there for 4 years before he passed. People sometimes are judgy about not keeping loved ones at home; but they haven't walked in our shoes. I visited my father every other day, brought him snacks and movies that we watched together. She lived to 90, and he 92. You do what you can.
Hi Cheryl! I well remember driving past the beautiful place where your father was living in your neighborhood. It seemed like a really good situation for all of you.
I don't know if people can really understand what it is like to care for someone who wanders. It is like living in a constant state of high alertness punctuated by moments of total panic.
Oh Amy…what memories you have evoked when my 3 sisters and I cared for our beautiful mom in the final 4 months of her battle with cancer. We all lived in different parts of the country so we each had to fly in when it was our week to be with Mom. All of us brought our own skills, talents, and yes, inadequacies to this experience.
To keep in touch, we made a Google document. The sister caring for Mom typed daily notes in black. The other 3 responded in their chosen color of ink so the caregiver knew who was responding. What a lifesaver it was to be able to have our sisters “on call” when questions and problems arose. Mom said that it was so interesting to see how each of us fit into the caregiver role and she was so grateful to have had 4 daughters! She wondered how it would have been to have had sons . But I think that when there is a need that absolutely must be done, you figure it out, albeit with trial and error.
When I think back on that time in our lives, now 15 years ago, I am so grateful we could provide that true “measure of love” for our Mom’s final journey. It wasn’t easy, at times it was heartbreaking, but we will always know that we were there for her. Bless you, Amy and your sisters/cousins.
I LOVE your technique for handling this. What a great suggestion about the doc! (we used group text and sometimes that became extremely unwieldy)! And I also appreciate that your mother was aware of your care. You four sisters loved her well. What a tribute to her!
When my sis was dying of cancer, the others of us stepped up so she could be in her home as long as possible. We took week-long shifts and I set up her extensive med list on a spreadsheet so the current caregiver could keep track of what she’d been given. One of our group of five remaining sisters, the sick ones twin, ironically, displayed little interest in the setup, choosing to shorten her weeks to three or four days. Someone else, usually me because I had powers of attorney, made up that time. By then, all of us were retired, so our schedules were freer and could make it work. I also tried to be there part of the time when our oldest sister was on “duty” because she had difficulty moving the patient alone. We all brought our strengths and weaknesses. I was happy to spend time alone with my sis and we shared many laughs and many serious discussions about subjects (usually death) which the other sisters hesitated to broach. I don’t regret a minute.
When we were no longer able to care for her alone, we set up a similar schedule to be with her during the day. Again, her twin was not often present, and none of us were able to ask her what was happening. In the last two weeks of her life, I chose to stay day and night with her and held her hand during the hallucinations that haunted her. At times, she’d call out for Mom or Dad. The most painful nights for me were when she thought I was her twin. The first night,I told her it was me, but the nights after, I let her believe her twin was with her. That twin refused to come to the small funeral my sis wanted and hasn’t been in touch with any of us since. Now, when people ask how many sisters I have, I answer five, but in my heart I say only four. The others of us have remained close, though we are at a distance, and celebrate birthdays.
Wow ... Dori -- what a tribute to your late-sister (and your parents) that she was surrounded by and cared for by her tribe of women. Her twin's response is unfortunate; from an outsider's perspective it is hard to imagine the surviving twin experience when one passes. It seems like an extremely vulnerable experience for the surviving twin; it's too bad your sister is handling this the way she is.
We live too long. Nobody wants to say it, and I'm sure I'll get clobbered for doing so, but I don't want to be that hero. I'm old myself now, helping to care for my mother who is 90.
Women always do more than they actually can. We did it for our own children, unlike their fathers, and we'll do it again for our parents.
My mother, now 96, has had dementia for at least ten years. She has gone through the continuum of care, starting with independent living, where she truly thrived for a while. She’s now in memory care. As the eldest and the only girl, I got the strong if unspoken message that I would be expected to take my mom in when the time came. It’s hard to admit, especially after reading about all that you do for family, but I always knew that would not be something I was able to do. I’m blessed with three younger brothers who share the decision making. And even though Mom’s daily needs are now attended to by professionals, there is still a lot - bills to pay, care meetings to attend, emergency room visits, reporting to each other on our visits to Mom. I will never stop feeling like a bad daughter because I don’t do enough. Maybe someday I will acknowledge how much my brothers and I have actually done.
Hi Linda -- my sister/cousins and I actually developed very distinct styles of caregiving. One more remote sister of mine handled ALL the paperwork regarding our family's situation. Oftentimes, I have not attended to physical needs but I'm pretty good at talking and joking and hanging out. (In my opinion, keeping someone company is an important part of caregiving.) Perhaps as the only daughter you have been there for your mother during her very long life in ways that your brothers have not been? PLEASE find a way to cope with these feelings of yours, and don't let these feelings keep you away from your family. Give your brothers credit where it's due and express your gratitude to them -- they certainly deserve it. But yes -- focus on what you have been able to do. Your mom is lucky to have four involved adult children!
I see you are still in Ask Amy mode, which makes me so happy. I shed a few tears reading your reply, but I did take it to heart. Had a great journaling session this morning. Love to you, my sister in caregiving.
As I read all that you and your sisters and cousins have done…that long list from Depends to the tours, paperwork…I cannot believe I, my husband-the-saint, and only niece survived the last 4 years of caring for my MIL, my only 2 sisters and beloved brother-in-law, as they all began to decline at once, all from various dementia. We pretty much lived in a favorite hotel for 2 years until we could find that perfect community (huge shoutout to Kingsway in Schenectady)…my BIL passed a few months back, a sister languishes in hospice care, and my other zips around in a chair as best she can…It wasn’t suppose to be this way. We had grand plans for retirement…the 3 sisters who always put off that visit, that call because, well, work. My advice to anyone with older family still competent: Arrange healthcare proxy, fully completed POAs, ensure solid Wills are in place and beneficiaries are on every account…and if you’re doing an elder’s taxes in NY and they live in a nursing home…yowza! Big refunds thanks to NYS tax credits for said facilities. Best wishes to all the caregivers…
Wow Cindy -- four family members with dementia and needing care! Holy Smokes. And you offer perfect and important advice. I'll be honest with you ... in the midst of this mess I sent a text to my daughters: "I will never do this to you."
All this, and absorbing your brother’s death. Girl, it is a lot (and we haven’t touched on the wider world). I hope you have an emergency stash of your favorite sweet, a cozy blanket, and your canine best bud close by for those moments of respite for you.💕
Hi Susan -- I'm fortunate to say that I have all of these things. And having a sweet dog has been an absolute lifesaver! Honestly, bringing my Miss Molly on overnights and for long stays at the house has been really helpful. EVERYBODY LOVES MOLLY.
There seems to be no situation in which you don’t find a way to make it better with your truly hilarious humor. I do miss reading your advice columns in the newspaper!
In my 40+ years as a dental hygienist, I noticed that there was only one or two men that brought their parents in for dental work. The rest were all daughters. I’m so proud of you and your sisters/sister cousins for stepping up and doing an extraordinary job.
Hi Carol -- I'm very grateful for your observation. My sisters and I are all humorous in that way, I think, and we get it from our late mother, who had a tough life but was always HILARIOUS -- especially about the tough stuff that you can't do anything about.
As one of the founding members of the dependable mod-squad - and one of the crying sisters - I love everything you have written here, sister.
Thank you! I'm so sorry I wasn't able to see the entire project through, but I'm so glad that you were there.
This might be helpful for caregivers--I am a nurse and there wasn't anything I couldn't do for a patient. BUT --I had to care for my parents when they were dying and I never thought I could provide that same kind of care for them. But, when you have to do it, you just do it. It was surprising-- protecting dignity isn't as hard as you might imagine. When someone is incredibly ill, their mind about that issue isn't the same. It is a little uncomfortable, but the efforts you make that indicate you are repectful (a towel covering, or some other minor adjustments-- looking away, being matter of fact) those efforts seem to be "enough."
I agree, Virginia. Taking care of some of the more personal stuff was much easier than I expected. I guess it's because you know that -- through this care -- you're helping the person.
I went through this with my brothers. As the only girl (and a professional nurse) a lot of my dad's caregiving fell to me, but the brothers kicked in with help as they were able. I made a point of including them in every decision through zoom calls. It was a little more work, but full transparency was important in the aftermath.
I arranged for us to be together in a hotel following my dad's death. A year later, I rented a very large house for us to stay together on the coast of Maine on the anniversary of dad's death and I provided all ameneties. I explained that I couldn't do that every year, but asked that we plan to meet each year after in a manner that met their own financial and social limits. We have done so each year and it has been wonderful.
TLDR-- make sure you have an easy plan immediately in place to continue your new found team identity. If you wait to set it in motion, it will get pushed aside.
When I was in college I got an internship in Florida and fast forward I moved there when I graduated after my boyfriend proposed in the airport at St. Louis. I lived nearly 40 years away from my family in Northern Illinois.
When my parents got older I finally got my husband to move back home. We bought a house with them in mind and two years later we welcomed them into our newly minted multi-generational home--complete with 2 masters, ours in the now finished basement.
I thought we would have them for at least a decade, but a year in Dad died suddenly and Mom followed 10 months later. We were devastated and honestly, still have those moments where it doesn't seem possible to have lost them so soon.
I could not stand being in the house, and we moved from Illinois to Northwestern Alabama to be close to Hubby's cousins. But we remain equidistant to siblings in Illinois and Florida.
Why am I am babbling on? Your piece just reminded me of the caregiver mentality which I loved because we never could have kids. And also brought back memories of how hard it was--the first time wiping your father's behind was one! Together, the good and hard, were so rewarding. I wouldn't change a thing, except to have them still be with us.
"The good and the hard" -- I agree that this is the toughest job a person could love to do.
This is so good. Expect to hear “club sandwich generation” nationwide. Also loved “this is not sustainable— and yet we keep going.”
Oh Amy -- thank you so much. I'm thrilled that you read this.
#TeamAmy
Oh yes, I've been unloading to friends about this same topic - and most definitely, we are in the "club-sandwich" generation. I'm learning that self care is critical for the well being of caregivers. A friend told me, "Just do your best and let God do the rest."
When Mel Brooks was asked, "Boxers or briefs?" his answer was "Depends!"
Haha -- wish I'd known that great Mel Brooks quote when I wrote this ...
Amy, this essay is amazing. Heartfelt, relatable, deep, funny, thoughtful, brilliant. You are an incredible writer. You also sound like a wonderful part of your large, connected, all too human family. They are lucky to have you. Thank you for writing something that encourages all of us to seek to understand our families while truly being there for them.
Thank you so much, Lucy. Honestly, when it comes to my family we are absolutely lucky to have each other!
You are surely exhausted. Take care of yourselves. On a lighter note my mother thought Depends were the greatest! She has been gone 20 years but I remember my siblings and I taking shifts to keep her comfortable at home. It was tiring but a blessing to be part of her leaving.
I am trying to imagine a world of caregiving before Depends. Truly a genius invention and a Godsend.
Great to wear before a colonoscopy!!!
Hi, Amy. I'm coming to this edition of your newsletter late. Both parents developed Alzheimer's near the end. My stepdad took care of mom at home in South Fla. and I flew in once a month or so to help (I was still working then). When she started falling (he couldn't lift her) and wandering, she went into a lovely assisted living and later, a nursing home. We moved my (single) dad from Fla. to our home in NOLA, but after eight months he became erratic, uncooperative, and frankly, dangerous. He was also wandering and wouldn't be kept inside. Fortunately, there was a good assisted living in the neighborhood and he was there for 4 years before he passed. People sometimes are judgy about not keeping loved ones at home; but they haven't walked in our shoes. I visited my father every other day, brought him snacks and movies that we watched together. She lived to 90, and he 92. You do what you can.
Hi Cheryl! I well remember driving past the beautiful place where your father was living in your neighborhood. It seemed like a really good situation for all of you.
I don't know if people can really understand what it is like to care for someone who wanders. It is like living in a constant state of high alertness punctuated by moments of total panic.
Oh Amy…what memories you have evoked when my 3 sisters and I cared for our beautiful mom in the final 4 months of her battle with cancer. We all lived in different parts of the country so we each had to fly in when it was our week to be with Mom. All of us brought our own skills, talents, and yes, inadequacies to this experience.
To keep in touch, we made a Google document. The sister caring for Mom typed daily notes in black. The other 3 responded in their chosen color of ink so the caregiver knew who was responding. What a lifesaver it was to be able to have our sisters “on call” when questions and problems arose. Mom said that it was so interesting to see how each of us fit into the caregiver role and she was so grateful to have had 4 daughters! She wondered how it would have been to have had sons . But I think that when there is a need that absolutely must be done, you figure it out, albeit with trial and error.
When I think back on that time in our lives, now 15 years ago, I am so grateful we could provide that true “measure of love” for our Mom’s final journey. It wasn’t easy, at times it was heartbreaking, but we will always know that we were there for her. Bless you, Amy and your sisters/cousins.
I LOVE your technique for handling this. What a great suggestion about the doc! (we used group text and sometimes that became extremely unwieldy)! And I also appreciate that your mother was aware of your care. You four sisters loved her well. What a tribute to her!
When my sis was dying of cancer, the others of us stepped up so she could be in her home as long as possible. We took week-long shifts and I set up her extensive med list on a spreadsheet so the current caregiver could keep track of what she’d been given. One of our group of five remaining sisters, the sick ones twin, ironically, displayed little interest in the setup, choosing to shorten her weeks to three or four days. Someone else, usually me because I had powers of attorney, made up that time. By then, all of us were retired, so our schedules were freer and could make it work. I also tried to be there part of the time when our oldest sister was on “duty” because she had difficulty moving the patient alone. We all brought our strengths and weaknesses. I was happy to spend time alone with my sis and we shared many laughs and many serious discussions about subjects (usually death) which the other sisters hesitated to broach. I don’t regret a minute.
When we were no longer able to care for her alone, we set up a similar schedule to be with her during the day. Again, her twin was not often present, and none of us were able to ask her what was happening. In the last two weeks of her life, I chose to stay day and night with her and held her hand during the hallucinations that haunted her. At times, she’d call out for Mom or Dad. The most painful nights for me were when she thought I was her twin. The first night,I told her it was me, but the nights after, I let her believe her twin was with her. That twin refused to come to the small funeral my sis wanted and hasn’t been in touch with any of us since. Now, when people ask how many sisters I have, I answer five, but in my heart I say only four. The others of us have remained close, though we are at a distance, and celebrate birthdays.
Wow ... Dori -- what a tribute to your late-sister (and your parents) that she was surrounded by and cared for by her tribe of women. Her twin's response is unfortunate; from an outsider's perspective it is hard to imagine the surviving twin experience when one passes. It seems like an extremely vulnerable experience for the surviving twin; it's too bad your sister is handling this the way she is.
We live too long. Nobody wants to say it, and I'm sure I'll get clobbered for doing so, but I don't want to be that hero. I'm old myself now, helping to care for my mother who is 90.
Women always do more than they actually can. We did it for our own children, unlike their fathers, and we'll do it again for our parents.
Dear Lucy -- you deserve a hug and a high five, NOT a clobbering!
My mother, now 96, has had dementia for at least ten years. She has gone through the continuum of care, starting with independent living, where she truly thrived for a while. She’s now in memory care. As the eldest and the only girl, I got the strong if unspoken message that I would be expected to take my mom in when the time came. It’s hard to admit, especially after reading about all that you do for family, but I always knew that would not be something I was able to do. I’m blessed with three younger brothers who share the decision making. And even though Mom’s daily needs are now attended to by professionals, there is still a lot - bills to pay, care meetings to attend, emergency room visits, reporting to each other on our visits to Mom. I will never stop feeling like a bad daughter because I don’t do enough. Maybe someday I will acknowledge how much my brothers and I have actually done.
Hi Linda -- my sister/cousins and I actually developed very distinct styles of caregiving. One more remote sister of mine handled ALL the paperwork regarding our family's situation. Oftentimes, I have not attended to physical needs but I'm pretty good at talking and joking and hanging out. (In my opinion, keeping someone company is an important part of caregiving.) Perhaps as the only daughter you have been there for your mother during her very long life in ways that your brothers have not been? PLEASE find a way to cope with these feelings of yours, and don't let these feelings keep you away from your family. Give your brothers credit where it's due and express your gratitude to them -- they certainly deserve it. But yes -- focus on what you have been able to do. Your mom is lucky to have four involved adult children!
I see you are still in Ask Amy mode, which makes me so happy. I shed a few tears reading your reply, but I did take it to heart. Had a great journaling session this morning. Love to you, my sister in caregiving.
Linda, we all do what we can. Focus on what you have been able to do.
As I read all that you and your sisters and cousins have done…that long list from Depends to the tours, paperwork…I cannot believe I, my husband-the-saint, and only niece survived the last 4 years of caring for my MIL, my only 2 sisters and beloved brother-in-law, as they all began to decline at once, all from various dementia. We pretty much lived in a favorite hotel for 2 years until we could find that perfect community (huge shoutout to Kingsway in Schenectady)…my BIL passed a few months back, a sister languishes in hospice care, and my other zips around in a chair as best she can…It wasn’t suppose to be this way. We had grand plans for retirement…the 3 sisters who always put off that visit, that call because, well, work. My advice to anyone with older family still competent: Arrange healthcare proxy, fully completed POAs, ensure solid Wills are in place and beneficiaries are on every account…and if you’re doing an elder’s taxes in NY and they live in a nursing home…yowza! Big refunds thanks to NYS tax credits for said facilities. Best wishes to all the caregivers…
Wow Cindy -- four family members with dementia and needing care! Holy Smokes. And you offer perfect and important advice. I'll be honest with you ... in the midst of this mess I sent a text to my daughters: "I will never do this to you."
All this, and absorbing your brother’s death. Girl, it is a lot (and we haven’t touched on the wider world). I hope you have an emergency stash of your favorite sweet, a cozy blanket, and your canine best bud close by for those moments of respite for you.💕
Hi Susan -- I'm fortunate to say that I have all of these things. And having a sweet dog has been an absolute lifesaver! Honestly, bringing my Miss Molly on overnights and for long stays at the house has been really helpful. EVERYBODY LOVES MOLLY.
"Our collective mothers were skilled boundary builders who conducted their personal lives behind an opaque privacy screen."
I think this quote of yours is so on target! They had a different way of handling these life events.
Beautiful piece! So important to highlight the struggle and the joy.
Thank you so much. I'm glad you read it!
There seems to be no situation in which you don’t find a way to make it better with your truly hilarious humor. I do miss reading your advice columns in the newspaper!
In my 40+ years as a dental hygienist, I noticed that there was only one or two men that brought their parents in for dental work. The rest were all daughters. I’m so proud of you and your sisters/sister cousins for stepping up and doing an extraordinary job.
Hi Carol -- I'm very grateful for your observation. My sisters and I are all humorous in that way, I think, and we get it from our late mother, who had a tough life but was always HILARIOUS -- especially about the tough stuff that you can't do anything about.