Art went down to tell mom it was time to sleep in the evening and make sure she's taken her medication, used the bathroom, etc. If I go down, she will argue with me that she's not ready and that she's watching TV or whatever, even though she's staring blankly at Japanese baseball that she doesn't understand at all. Her dementia is worsening. However, she will listen to Art (sometimes) and meekly go to bed. (My daughter says it must be a guy thing.) If we don't make sure she's gone to bed, she could easily fall asleep sitting up on the sofa... which she has.
So anyway, one evening Art came upstairs after getting her to sleep and sighed, "Aren't we retired? When is it our time to relax and enjoy ourselves?" He has remarked that we are truly running a care home here having all our time governed with her care except when she's at day care Monday thru Fridays from 7:30 AM-3:00 PM.
And I've been grateful for everything he's done helping to care for her since 2006 when she asked us to return to Hawaii after my father passed away.
Anyway.... I'm being diverted from what I was planning to write about.
Soooo when Art sighed, "When is it our time to relax and enjoy ourselves?" it reminded me of the song from West Side Story and I burst out singing,
"There's a time for us, Some day a time for us, Time together with time to spare, Time to look, time to care, Someday..."
He asked where that song was from so I looked it up (just to be sure) and it said Romeo and Juliet.
What?!? I thought it was West Side Story. So I researched this further. Would you believe the song from West Side Story and Romeo and Juliet have the same melody?
This is Barbra Streisand and Josh Groban singing A Place For Us from West Side Story. I think it's from 1961. (I was singing the 2nd verse.) This version was created by Leonard Bernstein and Stephen Sondheim.
And this is Andy Williams singing A Time for us from Romeo and Juliet. Apparently the lyrics were written in 1968.
So there you have it. I think.
POSTSCRIPT 1: Art just reminded me that it's really been only since 2022 or so that we began seeing Mom's slow decline. Prior to that she was doing very well and loved to clean, read, cook and work in the garden. We joked to friends that she was taking care of us and we enjoyed taking her on trips. I guess that's what makes it so very sad to see because she was really active and cognitively super sharp until then. There are so many emotions a caregiver goes through as you feel someone leaving you a little at a time.
POSTSCRIPT 2: The other day, I saw mom sitting on the sofa looking really weary. This was at 9:00 in the morning. I asked what was wrong and she said she was really tired and thought she was going to die. Mom is 96. She's never said anything like this before.
This freaked me out completely! I told her she should just take a nap and she might feel better. I watched her sleeping, making sure her chest was rising up and down. I texted my brother who told me that mom had told him her young life was "hell" and that being cared for by Art and me was heaven to her now in her old age. He told me I should be comforted that when the time comes that she has to leave us, we can feel we've done our best.
And that made me cry.
Well... she got up from her nap feeling much, much better.
Huge sigh of relief. I gave her a nice dessert that night. I swear... she's going to give me a heart attack.
And yes, I do have the best brother in the whole world along with the best husband… ❤️
The hardest part of being a caregiver is the Anticipatory Grief we have as we watch our loved one slowly decline bit by bit. For 10 years, I watched my husband decline and many times he'd just tell me he wanted to go to sleep and not wake up. You are doing an amazing job. And thankfully you do have elder day care to give you a break.
You guys are the best and you will not regret one moment of caring for her. Thank you.
It's hard to see your parents declining - and you may be sure your children are watching you just as closely. The child really does become father to the man.
West Side Story is essentially Romeo Juliet set in modern times so it doesn't surprise me they share the same song too.
Taking care of our parents is not an easy task. I am essentially in Art's position in our household with a live in MIL however, she is 77 years old and not 96. Twenty more years of this situation scares the heck out of me!
Sounds like she may soon choose her time to depart and it is her right to do. You have done a wonderful job of caring for her and she is very grateful for that.
Being a caregiver is hard work. The alternatives are bleak. Nursing homes are a business, geared to profits. Staff is minimized to cut costs, the staff is overworked and care is rushed. The advertisements always show smiling caregivers with their residents. The reality could not possibly be more different. You and Art are giving your mother a great gift. Never forget that.
Awww…😢 this made me tear up. My dad lived until almost 103 and it was very sad to see the dad that I once knew slip away from old age. (Luckily he did not have dementia.) Yes, when the time comes, we can take comfort in knowing we did what we could to help them in their transition. ❤️
Hi Pat, I miss the times we all spent together. I remember your telling us about your dad. I'm so glad he didn't have dementia. It's so hard to see memories disappear. But wow! 103! That's awesome!
My grandfather is 96 too, and he has expressed similar sentiments. You, Art and your brother have done wonderfully in making her feel happy every day. Thank you for sharing with us, it is not easy to navigate caregiving at all.
You and Art are amazing "children" to take such excellent care of your mother. I mean, you moved back home to do this. That was a very big deal to begin with.
Yes, she is getting older and needing more care, aren't we all. Terry is only 76, but after this liver procedure on Tuesday, he is moving very slowly, and I mean VERY. I can only imagine what your mother is like at 20 years older.
Also, you and Art get to do A LOT of things besides just the care of your mother. Look at all the travel you have done this year. I feel the same for us, and we didn't go as far or as for as long as you. We have had a marvelous year of time spent with our kids and just now, at the end of the year, these health issues are being taken care of, and taking time and energy. We are thankful for the time we had to do so many fun things during the year and now we must do the not-so-fun-things so that next year will again be a good year.
Your brother is terrific to step in while you are gone, sort of like our dear Kirby who steps in and cares for the cat colony while we are away. We really are living remarkable lives with good people.
Oh, Kay, how this post brings back memories of my mom. She lived with us the last 15 years of her life (except for the last year when she was in a memory care unit (at a beautiful place where I met her for tea every day after work). But she was diagnosed with Alzheimer's at 92, (stayed with us till 93 and died at 94 due to complications from Alzheimer's). It was when the doctor told us that she couldn't be home alone anymore (both of us worked)that we decided on moving her to the memory facility. I've always regretted sending her there... felt like I should have quit work and kept her home. But by this time, she wasn't happy anymore and I felt it was getting hard on DH, so it seemed the right solution. However, if I had any idea that she wasn't going to live out that year, I would have kept her home with us. You and Art are doing the right thing. Your mom is happy. That means so much...
And yes, I remember that song from West Side Story! And I used to sing it too... because the kids, their spouses, grandkids, and my mom all lived with us for a time... ( I loved it, but wondered too if there would ever 'be a time for us')
Although my mom didn't live with me, I was three minutes away and spent a lot of time with her, helping her live the way she wanted in her own house. It was hard though. She didn't fail mentally, only physically. It was painful for such an independent and active person to be so hampered yet I think I smoothed out the rough edges of it for her. Up until her death, she was touchingly grateful for everything I was doing. I miss her every day. Art and you are wonderful helpers to your mom and provide a secure and loving place for her. Just make sure to care for yourselves as well!
our moms do not live with us...so the hubs and i do have a lot of alone time and are able to still takes fun little day trips. i think that is really important. his mom, 88, lives at home and we have 24 hour care in the house for her. we still have to do everything else, it's a lot. my mom, 91, will not allow someone to live with her, she's in bad shape and i take things one day at a time. we pay chucks sister to help us and stay with her some, but i am doing everything else. food shopping, preparing meals....paying all the bills for both of them and it is starting to bring me down a little. you are doing the right thing, but that does not change feeling overwhelmed...and maybe a little sad about our circumstances. we both have siblings that will not help with anything, nothing and that really upsets me!! you are a very kind soul, our parents did a lot for us!!
It really is a time for us and for those around us. And many of us are so unprepared. We can try to turn back the aging process with nutritional corrections, stem cells, science, replacement parts, etc. but it is still time that wins. Your mom is one of the lucky ones because she has you. And we are all blessed because we get to peek into your loving life with your wonderful family. Mahalo for sharing.
A really dedicated and hard working care giver knows how stressful caregiving is. Your mother appreciates what you do. sometimes the irrational brain doesn't communicate how much it is appreciated.
Your mom IS one of the lucky ones, but caregiving is hard and the ravages of time are relentless and hard to watch. You and Art need to take advantage of all of the respite you can get.
Gosh, I remember that song from West Side Story. Didn't know it was in Romeo and Juliet. I'll have to check my album when Zefferilli did that movie. You and Art are the rare pair of angels to be taking care of your Mom. If she gets confused, her heart knows that you've taken good care of her. And even angels need a rest. Its not uncommon for an elderling parent to not want immediate care or attention from their direct child, and seemingly are more cooperative with another. When I've taken care of nurse colleagues parents, my colleague will end up asking me to go into the room to get the parent to do something, because of that phenomenon. I didn't say it is rational, it just happens, even with the littlest things. Don't take it personally. Elderlings will sometimes try to warn or control their exit from this world, even within dementia. Some don't want their family members around when their body slows down and leaves this world, because they don't want "to trouble them or upset them." She's lived a very long life and you two have made it a wonderful time for so long. Remind her and yourselves of all the trips you've taken with her, and even seeing her sisters via Facetime for the first time. It's a bit early, but consider reading one of those hospice booklets I sent to you. One has a lot of tips on dealing with and communicating with her even at this point. You know, like if she says the sky is green, you don't try to correct or argue with her, you just go along with it. She may talk about relatives who are gone, and you can probably extract a story from that chat. Some folks talk about a transportation method, as part of their time to figure out how they do the work of exiting this world. Wonder if she'll say something about the bicycle rides she endured as a child. I had one hospice patient who kept talking about "catching the apple train." His relatives were confused. An older relative came to visit and told us that during his childhood, they'd play in the apple orchards in Washington state, hopping on to the apple carts that ran on a train track during harvesting! Offer her food and treats she likes. I'm not sure we're overtly worried about her labs at this time, but certainly attempting to keep her blood pressure correct may get trickier. Especially when they're thirsty but won't drink enough, so many elderlings would just like a popsicle like they had as a kid. Get one for yourselves too! You probably qualify to have someone come into your home to help. Might check with the hospital's social services or the daycare director. Hugz, thinking of you. Linda B.
Kay of Musings: Thank you so very much, Linda. We’re really having to watch ourselves and remind each other that she just CAN’T remember. Art prepares her dinner each night while I’m giving her a bath and puts extra effort into making it pretty. She comes to the table and always exclaims how beautiful and delicious it all looks. AND I give her a tiny dessert because her appetite isn’t the same these days. We have to adapt our care of her constantly as more and more of her memory fades.
I’ve lost two dear friends a couple of years ago. Jean asked her husband to leave the room to get something and then she passed away while he was gone. My other friend, Peggy’s husband told me that just before she died she was talking to her mom and brother who passed away many years before. I’m always on edge now watching to make sure her chest is moving up and down when she’s napping.
Bless you two. You are doing a beautiful job taking care of her. Of all the older patients i saw in nursing homes, it seems maybe 30% had regular visitors beyond the caretakers. At least 40% have no visitors or caring family at all. You are doing a most honorable task. Chat with her distant memory and see what unknown stories she still has. Open ended questions make for some interesting results. Like, what were games that she used to play with her siblings? Don't be afraid; it's usually comforting for your elderling. Some speak of actually seeing their long gone relative in the same room or at the end of the bed. Who is to know what really happens? Hang in there, Linda B.
My mom died a yr ago in August at the age of 91. She spent the last 6 mos of her life in a long term care facility. I spent a lot of time with her there to augment the custodial care offered. As a retired nurse, I was cognizant of the signs of pending death. On the morning she passed, I laid in bed with her in my arms. She took her last breath like that, a gentle passing. When there's dementia, we lose our loved ones twice, first to dementia then to death. You & Art are caring angels to your mom. Take care of yourselves as well.
Kay of Musings: Hello Mona… I’m sorry this is late. I’ve been so preoccupied … and now am suffering from vertigo. Your mom’s passing was so beautiful. I hope my mom can have the same beautiful passing.
Kay, my mom passed six months ago, and we often felt When is our time? Hang in there, your time will come and you will miss your mom so much Thank you so much to have a helper in Art and that your filial piety is well noted by all those who read your blog and all your friends. She is at home and she loves being there and you are honoring her and God is blessing you with the ability to take care of her. You are doing such a wonderful job. My mom never wanted to go to a care facility and we were able to take care of her at home. I know many are not, but we were blessed to be able to. When she is gone you will be lost for months, that is ok. That is the usual feeling of lost and grief. Sending love to you and Art
Being a full-time caregiver is one of the hardest jobs in the world. You and Art have been an inspiration to me in the way you care for your dear mother.
It is not easy looking after a parent or parents ... You and Art have been, and continue to be, wonderful. Sending you both a big hug across the miles.
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The hardest part of being a caregiver is the Anticipatory Grief we have as we watch our loved one slowly decline bit by bit. For 10 years, I watched my husband decline and many times he'd just tell me he wanted to go to sleep and not wake up.
ReplyDeleteYou are doing an amazing job. And thankfully you do have elder day care to give you a break.
You guys are the best and you will not regret one moment of caring for her. Thank you.
It's hard to see your parents declining - and you may be sure your children are watching you just as closely. The child really does become father to the man.
ReplyDeleteWest Side Story is essentially Romeo Juliet set in modern times so it doesn't surprise me they share the same song too.
ReplyDeleteTaking care of our parents is not an easy task. I am essentially in Art's position in our household with a live in MIL however, she is 77 years old and not 96. Twenty more years of this situation scares the heck out of me!
Sounds like she may soon choose her time to depart and it is her right to do. You have done a wonderful job of caring for her and she is very grateful for that.
ReplyDeleteYour mom is so lucky to have you Art and your brother.
ReplyDeleteYou sound like such a lovely person, its no surprise that you have a wonderful husband and brother.
ReplyDeleteCeci
Thank you so much, Ceci. This is so very kind of you to say,
DeleteBeing a caregiver is hard work. The alternatives are bleak. Nursing homes are a business, geared to profits. Staff is minimized to cut costs, the staff is overworked and care is rushed. The advertisements always show smiling caregivers with their residents. The reality could not possibly be more different. You and Art are giving your mother a great gift. Never forget that.
ReplyDeleteYou have hard decisions ahead. Follow your heart not your head❤️
ReplyDeleteKay of musings: Thank you Betty. I’m trying. It’s definitely a challenge though.
DeleteAwww…😢 this made me tear up. My dad lived until almost 103 and it was very sad to see the dad that I once knew slip away from old age. (Luckily he did not have dementia.) Yes, when the time comes, we can take comfort in knowing we did what we could to help them in their transition. ❤️
ReplyDeleteOops, this is Pat.
DeleteHi Pat, I miss the times we all spent together. I remember your telling us about your dad. I'm so glad he didn't have dementia. It's so hard to see memories disappear. But wow! 103! That's awesome!
DeleteMy grandfather is 96 too, and he has expressed similar sentiments. You, Art and your brother have done wonderfully in making her feel happy every day. Thank you for sharing with us, it is not easy to navigate caregiving at all.
ReplyDeleteYou are all a wonderful, caring family, and that includes you for sure.
ReplyDeleteLovely story about Mom. We know there is an end for all of us but we can't help but feeling WE are not ready for them to go.
ReplyDeleteYou and Art are amazing "children" to take such excellent care of your mother. I mean, you moved back home to do this. That was a very big deal to begin with.
ReplyDeleteYes, she is getting older and needing more care, aren't we all. Terry is only 76, but after this liver procedure on Tuesday, he is moving very slowly, and I mean VERY. I can only imagine what your mother is like at 20 years older.
Also, you and Art get to do A LOT of things besides just the care of your mother. Look at all the travel you have done this year. I feel the same for us, and we didn't go as far or as for as long as you. We have had a marvelous year of time spent with our kids and just now, at the end of the year, these health issues are being taken care of, and taking time and energy. We are thankful for the time we had to do so many fun things during the year and now we must do the not-so-fun-things so that next year will again be a good year.
Your brother is terrific to step in while you are gone, sort of like our dear Kirby who steps in and cares for the cat colony while we are away. We really are living remarkable lives with good people.
Oh, Kay, how this post brings back memories of my mom. She lived with us the last 15 years of her life (except for the last year when she was in a memory care unit (at a beautiful place where I met her for tea every day after work). But she was diagnosed with Alzheimer's at 92, (stayed with us till 93 and died at 94 due to complications from Alzheimer's). It was when the doctor told us that she couldn't be home alone anymore (both of us worked)that we decided on moving her to the memory facility. I've always regretted sending her there... felt like I should have quit work and kept her home. But by this time, she wasn't happy anymore and I felt it was getting hard on DH, so it seemed the right solution. However, if I had any idea that she wasn't going to live out that year, I would have kept her home with us. You and Art are doing the right thing. Your mom is happy. That means so much...
ReplyDeleteAnd yes, I remember that song from West Side Story! And I used to sing it too... because the kids, their spouses, grandkids, and my mom all lived with us for a time... ( I loved it, but wondered too if there would ever 'be a time for us')
DeleteAlthough my mom didn't live with me, I was three minutes away and spent a lot of time with her, helping her live the way she wanted in her own house. It was hard though. She didn't fail mentally, only physically. It was painful for such an independent and active person to be so hampered yet I think I smoothed out the rough edges of it for her. Up until her death, she was touchingly grateful for everything I was doing. I miss her every day. Art and you are wonderful helpers to your mom and provide a secure and loving place for her. Just make sure to care for yourselves as well!
ReplyDeleteour moms do not live with us...so the hubs and i do have a lot of alone time and are able to still takes fun little day trips. i think that is really important. his mom, 88, lives at home and we have 24 hour care in the house for her. we still have to do everything else, it's a lot. my mom, 91, will not allow someone to live with her, she's in bad shape and i take things one day at a time. we pay chucks sister to help us and stay with her some, but i am doing everything else. food shopping, preparing meals....paying all the bills for both of them and it is starting to bring me down a little. you are doing the right thing, but that does not change feeling overwhelmed...and maybe a little sad about our circumstances. we both have siblings that will not help with anything, nothing and that really upsets me!! you are a very kind soul, our parents did a lot for us!!
ReplyDeleteIt really is a time for us and for those around us. And many of us are so unprepared. We can try to turn back the aging process with nutritional corrections, stem cells, science, replacement parts, etc. but it is still time that wins. Your mom is one of the lucky ones because she has you. And we are all blessed because we get to peek into your loving life with your wonderful family. Mahalo for sharing.
ReplyDeleteA really dedicated and hard working care giver knows how stressful caregiving is. Your mother appreciates what you do. sometimes the irrational brain doesn't communicate how much it is appreciated.
ReplyDeleteYour story is a testament to the beautiful relationship you and Art have with your Mom.
ReplyDeleteYour mom IS one of the lucky ones, but caregiving is hard and the ravages of time are relentless and hard to watch. You and Art need to take advantage of all of the respite you can get.
ReplyDeleteShe has lived a very long and fruitful life. I hope she passes easily when the time comes, Kay.
ReplyDeleteGosh, I remember that song from West Side Story. Didn't know it was in Romeo and Juliet. I'll have to check my album when Zefferilli did that movie.
ReplyDeleteYou and Art are the rare pair of angels to be taking care of your Mom. If she gets confused, her heart knows that you've taken good care of her. And even angels need a rest. Its not uncommon for an elderling parent to not want immediate care or attention from their direct child, and seemingly are more cooperative with another. When I've taken care of nurse colleagues parents, my colleague will end up asking me to go into the room to get the parent to do something, because of that phenomenon. I didn't say it is rational, it just happens, even with the littlest things. Don't take it personally.
Elderlings will sometimes try to warn or control their exit from this world, even within dementia. Some don't want their family members around when their body slows down and leaves this world, because they don't want "to trouble them or upset them." She's lived a very long life and you two have made it a wonderful time for so long. Remind her and yourselves of all the trips you've taken with her, and even seeing her sisters via Facetime for the first time.
It's a bit early, but consider reading one of those hospice booklets I sent to you. One has a lot of tips on dealing with and communicating with her even at this point. You know, like if she says the sky is green, you don't try to correct or argue with her, you just go along with it. She may talk about relatives who are gone, and you can probably extract a story from that chat. Some folks talk about a transportation method, as part of their time to figure out how they do the work of exiting this world. Wonder if she'll say something about the bicycle rides she endured as a child.
I had one hospice patient who kept talking about "catching the apple train." His relatives were confused. An older relative came to visit and told us that during his childhood, they'd play in the apple orchards in Washington state, hopping on to the apple carts that ran on a train track during harvesting!
Offer her food and treats she likes. I'm not sure we're overtly worried about her labs at this time, but certainly attempting to keep her blood pressure correct may get trickier. Especially when they're thirsty but won't drink enough, so many elderlings would just like a popsicle like they had as a kid. Get one for yourselves too!
You probably qualify to have someone come into your home to help. Might check with the hospital's social services or the daycare director. Hugz, thinking of you. Linda B.
Kay of Musings: Thank you so very much, Linda. We’re really having to watch ourselves and remind each other that she just CAN’T remember. Art prepares her dinner each night while I’m giving her a bath and puts extra effort into making it pretty. She comes to the table and always exclaims how beautiful and delicious it all looks. AND I give her a tiny dessert because her appetite isn’t the same these days. We have to adapt our care of her constantly as more and more of her memory fades.
DeleteI’ve lost two dear friends a couple of years ago. Jean asked her husband to leave the room to get something and then she passed away while he was gone. My other friend, Peggy’s husband told me that just before she died she was talking to her mom and brother who passed away many years before. I’m always on edge now watching to make sure her chest is moving up and down when she’s napping.
Bless you two. You are doing a beautiful job taking care of her. Of all the older patients i saw in nursing homes, it seems maybe 30% had regular visitors beyond the caretakers. At least 40% have no visitors or caring family at all. You are doing a most honorable task. Chat with her distant memory and see what unknown stories she still has. Open ended questions make for some interesting results. Like, what were games that she used to play with her siblings? Don't be afraid; it's usually comforting for your elderling. Some speak of actually seeing their long gone relative in the same room or at the end of the bed. Who is to know what really happens? Hang in there, Linda B.
DeleteMy mom died a yr ago in August at the age of 91. She spent the last 6 mos of her life in a long term care facility. I spent a lot of time with her there to augment the custodial care offered. As a retired nurse, I was cognizant of the signs of pending death. On the morning she passed, I laid in bed with her in my arms. She took her last breath like that, a gentle passing. When there's dementia, we lose our loved ones twice, first to dementia then to death. You & Art are caring angels to your mom. Take care of yourselves as well.
ReplyDeleteKay of Musings: Hello Mona… I’m sorry this is late. I’ve been so preoccupied … and now am suffering from vertigo. Your mom’s passing was so beautiful. I hope my mom can have the same beautiful passing.
DeleteKay, my mom passed six months ago, and we often felt When is our time? Hang in there, your time will come and you will miss your mom so much Thank you so much to have a helper in Art and that your filial piety is well noted by all those who read your blog and all your friends. She is at home and she loves being there and you are honoring her and God is blessing you with the ability to take care of her. You are doing such a wonderful job. My mom never wanted to go to a care facility and we were able to take care of her at home. I know many are not, but we were blessed to be able to. When she is gone you will be lost for months, that is ok. That is the usual feeling of lost and grief. Sending love to you and Art
ReplyDeleteBeing a full-time caregiver is one of the hardest jobs in the world. You and Art have been an inspiration to me in the way you care for your dear mother.
ReplyDeleteIt is not easy looking after a parent or parents ...
ReplyDeleteYou and Art have been, and continue to be, wonderful.
Sending you both a big hug across the miles.
All the best Jan
A beautiful, poignant post.
ReplyDelete