Care giving is so very very hard, but also can be very beautiful. I’m glad you are writing to make sense of it, and I wholeheartedly recommend having a life away from it as much as you can, too.
Thank you so much. I agree--I have taken small breaks and we're putting some pieces in place so it's not 24/7. My ten year old had a major meltdown this weekend which reminded me to step away when I can. Thanks for taking time to comment and remind me, too.
In a year of absolute s*** (last year), I've discovered grounding in the present moment and not letting all the worries and anxieties of the future drag me under. Wishing you, your family, your mother-in-law, and your sulking dog hope, light, and love x
Thank you for sharing your journey. This is spirituality in action! I have shared this post on my own FB page and a spiritual FB page I am part of. I know that in what you have written (as usual, so beautifully) there will be gems of wisdom and help for others who read it. Life isn't always about enjoying the sunsets and a glass of wine - sometimes it also includes the mosquitoes and evening moths!
Knee-deep, thigh-deep, head underneath. Beautiful. How to swim when you're drowning...? I loved reading this list, and have even been working on a post on balls being dropped. One of the things I like to ask myself when everything is going sideways is, "How 'should' I feel right now, when the shit is hitting the fan?" It helps me root out some of the resistance I often have to feeling my frustration or fear or grief. It helps me to accept that I am human and that the present circumstance is a lot for my limited brain to handle. It even helps me sometimes to move toward or lean into negative feelings, because I realize that when life is gettin life-y, I WANT to have strong feelings about it. Because I care about my life and the dear humans in it. Because I'm still here, fighting for the loveliest life possible!
I like this. I have been at the edge of agitation for a lot of the week and noticed yesterday: oh, that's totally normal for the week we've had. Today, I wrote early, felt calmer. Let's fight together for a the loveliest life possible.
I’m leaning in a lot lately so any strength in numbers (others also leaning in) I’ll take these days! I like the notion of asking how I should feel. That’s a great strategy for altering the mind trajectory, I’m going to ask myself that more. Today. Now.
Alice, I feel not so alone as I navigate a similar rocky stream with my Mom. Seven years into this caregiving role, slipping off many slippery stones and getting very wet on the regular, but also loving this time with my best friend. Caring for Dad in year one as he faced the worst of Parkinson’s and dementia.
Thank you for your beautiful words, lifting my spirit in the midst of the sometimes heavy days
I'm sure some days are very heavy. And yet full of love, too. I like the slippery stones and rocky stream you convey. Thank you for sharing here, with such lovely words and heart. xox
Love your piece will be helpful for so many. I brought my mother to live with me she had vascular dementia later on lung cancer. I live in one bedroom bungalow in sheltered accommodation. I have mobility issues. It was hard but also a privilege you will know what I mean. I don’t think there is a recipe on how, all you can do is your best. You have children and seem to be navigating your way through it fantastically. I took my mum to Jersey Channel Islands as much as I can. She used to take my brother he had muscular dystrophy was his and her favourite place. We used to count the sleeps when got near to going she seemed much better there. Yes there was obstacles as times went on but also just being in a different space was also good for me. Sometimes you would think the dementia was getting worst, it wasn’t it was a water infection. I got that I knew which and if the antibiotics were given straight away, would have 36hours of mania then it would break. She would then go back to herself struggling to find the words. I have passed that advice on to many including carers , surprising how many have water infections particular in care homes and hospital and it is ignored due to thinking it was the dementia. I used to think I should have a tape recorder playing which would say mum drink your drink. Once again you are doing great, continue to take time for yourself. Remember your own advice which is brilliant. Thanks for sharing.
This is so generous and helpful. Thank you. I appreciate your story here, and your advice. I'm going to give her water to drink now--I notice when she's tired or before meals her symptoms are stronger. This is excellent guidance xoxxo
I have just remembered as time went on my mother would leave her evening meal after a bite. By chance I started given it her at 4 and she ate it all. In Jersey because we were out and about we would have large lunch and a sandwich yoghurt about 5. I also found her swallowing got difficult like a child started leaving her vegetables. I discovered the steam bags were smaller she would eat them. I also got some thickening powder for drinks soups etc wouldn’t look very nice in water but ask for advice from occupational therapist. Don’t hesitate to ask me anything might not be able to help. Reading your post don’t think you will need it, especially as you have children. No need to respond think you have your hands full. Take care.
Thanks for this, too. I'm appreciating everything you're saying. She never feels hungry and always eats at this stage--I see the next stage on the horizon and feel better prepared...
Thank you so much, Alice. I navigated my mom's Alz for the last three years. Thank you for capturing some of how this feels. As you point to, so much of this can't be understood...just felt. Sending you care.
Thank you for taking time to read and comment. This feels both very new and very familiar. She gets great joy every evening when I take her Pjs out the dryer and it’s so absolutely gorgeous each time. She says the very same thing, and I hope to give small pleasures for the time we have. Thank you again for reaching out. I feel a lot of hands holding us up on here ❤️
Thank you, thank YOU! I'm so glad it's helpful. And I send your mom a hug from afar. My mother-in-law is re-reading the same page with joy. It's quietly lovely right now.
Oh my gosh... difficult times for certain. Caregiving is demanding, parenting is demanding. Finding yourself between these spaces will remain a challenge. Hold onto those little moments and cherish them. Pour your words in as you can, take strength where you find it. Sending you a HUGE HUG. Bernie
Accepting huge hugs with joy! Thank you. The weekend threw everything quite a bit, and I notice how many small and big things I have to shift. But the spaces are there if I look. Hugs back to you x
This is wonderful. Thank you for it, and I’ve subscribed!
Also, whether by fate or algorithm, this showed up for me on the week that the podcast I produce was an interview with Jessica Guthrie, who shares her story as a caregiver for her mother with Alzheimer’s on Instagram at @careercaregivingcollide. Our podcast is Dying To Tell You and we usually interview people who are facing terminal diagnoses. But Jessica’s story as a caregiver was a perfectly adjacent interview.
Anyway, thank you again and I look forward to reading more!
Oh thank you. I’ll look up the podcast and cue it for a drive between sports. That sounds really helpful—and wonderful timing for me. I feel there’s a lot for me to learn from and listen to. We’re just beginning, but the support on here has been wonderful. Heartening ❤️
Hi Alice, now is your chance to read the first part of my essay "Being caregiver – a dance on a tightrope". Look for part 2 on Monday the 19th. And thanks for inspiring me to get started with posting this one. The responses I have gotten from people I have shown the essay find it helpful. The journey involved is not only challenging, it can be very lonely and the energy to reach out not always at hand.
You really captured the intricacies of caregiving. So many people are in similar situations and can take heart. I have been there too, for 8 years. I survived. The last 2 years I am on my own and can evaluate and appreciate all that I gained and learned from those caregiver years. I have written an essay about it, that I think I will post on Substack in the near future.
Oh please do. And please tag me or share it with me in some way. We had to move Yann's mum into a home as her mental capacity deteriorated, but we'll go to see her today. I really resonate with what you say about caregiving, even though it wasn't for as long as we wanted in our home xox
I don't know how to "tag you", but I have decided to post my essay "Being caregiver – a dance on a tightrope", (which is pretty long) in two parts, on Thursday May 15 and on May 19. So, at least you know when to look for it. I would of course love to hear your comments later on.
I'm so sorry to hear that you're walking this path, Gayle. I learned so many things over the last year and I know I have much to learn, still. Walking quietly alongside you. Alice
This is the first thing I read this morning on here and just so nice (I know I'm six days behind but I think you're used to my bursts of organization and days of missing comments!) Thank you so much, Gayle xoxox
My wish for you is a whole weekend of quiet and lovely.
(With a little hockey tournament thrown in ;-) Such beautiful weather here, it’s helping everyone’s mood!
Care giving is so very very hard, but also can be very beautiful. I’m glad you are writing to make sense of it, and I wholeheartedly recommend having a life away from it as much as you can, too.
Thank you so much. I agree--I have taken small breaks and we're putting some pieces in place so it's not 24/7. My ten year old had a major meltdown this weekend which reminded me to step away when I can. Thanks for taking time to comment and remind me, too.
In a year of absolute s*** (last year), I've discovered grounding in the present moment and not letting all the worries and anxieties of the future drag me under. Wishing you, your family, your mother-in-law, and your sulking dog hope, light, and love x
Thanks for reaching out. It’s good advice and I hope your year has turned a little. Our dog is still sulky, but a little less so…
Thank you for sharing your journey. This is spirituality in action! I have shared this post on my own FB page and a spiritual FB page I am part of. I know that in what you have written (as usual, so beautifully) there will be gems of wisdom and help for others who read it. Life isn't always about enjoying the sunsets and a glass of wine - sometimes it also includes the mosquitoes and evening moths!
You're fab, Justine. Thank you so much. Moths and mosquitos. Absolutely. xoxox
Knee-deep, thigh-deep, head underneath. Beautiful. How to swim when you're drowning...? I loved reading this list, and have even been working on a post on balls being dropped. One of the things I like to ask myself when everything is going sideways is, "How 'should' I feel right now, when the shit is hitting the fan?" It helps me root out some of the resistance I often have to feeling my frustration or fear or grief. It helps me to accept that I am human and that the present circumstance is a lot for my limited brain to handle. It even helps me sometimes to move toward or lean into negative feelings, because I realize that when life is gettin life-y, I WANT to have strong feelings about it. Because I care about my life and the dear humans in it. Because I'm still here, fighting for the loveliest life possible!
I like this. I have been at the edge of agitation for a lot of the week and noticed yesterday: oh, that's totally normal for the week we've had. Today, I wrote early, felt calmer. Let's fight together for a the loveliest life possible.
I’m leaning in a lot lately so any strength in numbers (others also leaning in) I’ll take these days! I like the notion of asking how I should feel. That’s a great strategy for altering the mind trajectory, I’m going to ask myself that more. Today. Now.
Thanks for the thoughts to you both today.
Likewise.
xo
Alice, I feel not so alone as I navigate a similar rocky stream with my Mom. Seven years into this caregiving role, slipping off many slippery stones and getting very wet on the regular, but also loving this time with my best friend. Caring for Dad in year one as he faced the worst of Parkinson’s and dementia.
Thank you for your beautiful words, lifting my spirit in the midst of the sometimes heavy days
I'm sure some days are very heavy. And yet full of love, too. I like the slippery stones and rocky stream you convey. Thank you for sharing here, with such lovely words and heart. xox
🩵
Love your piece will be helpful for so many. I brought my mother to live with me she had vascular dementia later on lung cancer. I live in one bedroom bungalow in sheltered accommodation. I have mobility issues. It was hard but also a privilege you will know what I mean. I don’t think there is a recipe on how, all you can do is your best. You have children and seem to be navigating your way through it fantastically. I took my mum to Jersey Channel Islands as much as I can. She used to take my brother he had muscular dystrophy was his and her favourite place. We used to count the sleeps when got near to going she seemed much better there. Yes there was obstacles as times went on but also just being in a different space was also good for me. Sometimes you would think the dementia was getting worst, it wasn’t it was a water infection. I got that I knew which and if the antibiotics were given straight away, would have 36hours of mania then it would break. She would then go back to herself struggling to find the words. I have passed that advice on to many including carers , surprising how many have water infections particular in care homes and hospital and it is ignored due to thinking it was the dementia. I used to think I should have a tape recorder playing which would say mum drink your drink. Once again you are doing great, continue to take time for yourself. Remember your own advice which is brilliant. Thanks for sharing.
This is so generous and helpful. Thank you. I appreciate your story here, and your advice. I'm going to give her water to drink now--I notice when she's tired or before meals her symptoms are stronger. This is excellent guidance xoxxo
I have just remembered as time went on my mother would leave her evening meal after a bite. By chance I started given it her at 4 and she ate it all. In Jersey because we were out and about we would have large lunch and a sandwich yoghurt about 5. I also found her swallowing got difficult like a child started leaving her vegetables. I discovered the steam bags were smaller she would eat them. I also got some thickening powder for drinks soups etc wouldn’t look very nice in water but ask for advice from occupational therapist. Don’t hesitate to ask me anything might not be able to help. Reading your post don’t think you will need it, especially as you have children. No need to respond think you have your hands full. Take care.
Thanks for this, too. I'm appreciating everything you're saying. She never feels hungry and always eats at this stage--I see the next stage on the horizon and feel better prepared...
Thank you so much, Alice. I navigated my mom's Alz for the last three years. Thank you for capturing some of how this feels. As you point to, so much of this can't be understood...just felt. Sending you care.
Thank you for taking time to read and comment. This feels both very new and very familiar. She gets great joy every evening when I take her Pjs out the dryer and it’s so absolutely gorgeous each time. She says the very same thing, and I hope to give small pleasures for the time we have. Thank you again for reaching out. I feel a lot of hands holding us up on here ❤️
This so gorgeous and helpful. Going to print it out (!) for my mom who is really the big caregiver for my dad. Thank you thank you thank you.
Thank you, thank YOU! I'm so glad it's helpful. And I send your mom a hug from afar. My mother-in-law is re-reading the same page with joy. It's quietly lovely right now.
This is beautiful ❤️. Thankyou for the distillation. (I love a good list)
And thank you xoxox
Oh my gosh... difficult times for certain. Caregiving is demanding, parenting is demanding. Finding yourself between these spaces will remain a challenge. Hold onto those little moments and cherish them. Pour your words in as you can, take strength where you find it. Sending you a HUGE HUG. Bernie
Accepting huge hugs with joy! Thank you. The weekend threw everything quite a bit, and I notice how many small and big things I have to shift. But the spaces are there if I look. Hugs back to you x
This is wonderful. Thank you for it, and I’ve subscribed!
Also, whether by fate or algorithm, this showed up for me on the week that the podcast I produce was an interview with Jessica Guthrie, who shares her story as a caregiver for her mother with Alzheimer’s on Instagram at @careercaregivingcollide. Our podcast is Dying To Tell You and we usually interview people who are facing terminal diagnoses. But Jessica’s story as a caregiver was a perfectly adjacent interview.
Anyway, thank you again and I look forward to reading more!
Oh thank you. I’ll look up the podcast and cue it for a drive between sports. That sounds really helpful—and wonderful timing for me. I feel there’s a lot for me to learn from and listen to. We’re just beginning, but the support on here has been wonderful. Heartening ❤️
Hi Alice, now is your chance to read the first part of my essay "Being caregiver – a dance on a tightrope". Look for part 2 on Monday the 19th. And thanks for inspiring me to get started with posting this one. The responses I have gotten from people I have shown the essay find it helpful. The journey involved is not only challenging, it can be very lonely and the energy to reach out not always at hand.
Thank you! I'll take a look right now xoxo
You really captured the intricacies of caregiving. So many people are in similar situations and can take heart. I have been there too, for 8 years. I survived. The last 2 years I am on my own and can evaluate and appreciate all that I gained and learned from those caregiver years. I have written an essay about it, that I think I will post on Substack in the near future.
Oh please do. And please tag me or share it with me in some way. We had to move Yann's mum into a home as her mental capacity deteriorated, but we'll go to see her today. I really resonate with what you say about caregiving, even though it wasn't for as long as we wanted in our home xox
I don't know how to "tag you", but I have decided to post my essay "Being caregiver – a dance on a tightrope", (which is pretty long) in two parts, on Thursday May 15 and on May 19. So, at least you know when to look for it. I would of course love to hear your comments later on.
Oh good! I'll try to remember to look for it (or just comment here again and I'll make sure to read. I'm really looking forward to it!)
I shared this with my sister as we both watch helplessly as our mom slide down that slippery slope💔
I'm so sorry to hear that you're walking this path, Gayle. I learned so many things over the last year and I know I have much to learn, still. Walking quietly alongside you. Alice
Alice this is SO Powerful and SO Timely. THANK you💞
This is the first thing I read this morning on here and just so nice (I know I'm six days behind but I think you're used to my bursts of organization and days of missing comments!) Thank you so much, Gayle xoxox