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.
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 ❤️
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, 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.
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
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 ❤️
I just read the article featuring your mom and step-dad. What accomplished people they are! So impressive, all of the letters after their names! And what helpful, clear insights they shared. Brave P—so inspiring.
Thank you for this post and little list. Anyone who has ADHD, ADD or trouble focusing can take from this. I have those same silver fish flit and slither into the ether and subconscious. One thing I have learned this past year is the power of passive meditation. When I lose a thought, later, I meditate on the particulars surrounding the thought even if it’s right before bed. Often it takes me into the physical space and allows the thought to come back. It’s even come back days later under familiar circumstances, and so I rush to scratch it down in any way I can. The dream writing is a useful way to recapture the thought as well, because recently I’ve been dreaming my creative narrative. I need to practice morning pages more. I’ve abandoned the practice (I do that every once in a while for lengths of time), and when I’m diligent with them I usually can recall the flash as is scurries through my minds eye again.
Enjoy this lovely weekend. Much appreciated reading this today.
Thanks a lot, Stephan. I haven't heard of that before--passive meditation--and I like the whole concept. I enjoy those quiet moments when everyone is in bed. My mother-in-law has eased some of the night wandering now she's a little more settled, too. I'm going to try this. And I like the idea of dream writing, too.
This weekend has a lot of sunshine in the forecast. It's a beauty of the prairies and this strange winterless winter, we're headed for more plus numbers.
I’m loving your posts btw. Going to continue to read more as they fly in.
As I engage my writing practice more I look forward to the motivation and dialogue. I don’t have near enough of that with my circle. It’s time to explore my surroundings and community of writers and creatives more. We have all hibernated so much lately that with all the things going on around us our mutual comfort and contact is more important than ever I feel. For me anyway and I’m a virtual hermit at the best of times despite my social animal outward nature when I do engage in public things.
Oh, yes, the silver fish! That was such a great metaphor! I've never thought of trying to meditate my way into remembering a thought! Fascinating. Can you do some morning pages tomorrow? Or Sunday? I think your comment may be calling you to do some, even if you can't be "diligent"!
Marika I started my MP’s again on Feb 1. So much soup to spoon through though. Lol. I’m excited again now that I’m reading others also use them. I appreciate the comment and encouragement.
Oomph! I hear you, Alice. I've been keeping an eye out for your article. Soulful resonance, heartache and hugs. I'm relieved your Mum and you can discuss this together, but I am so sad to hear her husband also has Alzheimer's. Here, if you have questions or just want to chat. I also took solace in writing - long update emails to friends or journaling. Take care
Thank you so much, Victoria. I am grateful for how you've reached out. We've just started, and I knew writing was going to help me so much with the transition. It's interesting how all the work we've done with my son with ADHD and severe anxiety has also helped and shaped what I'm able to do. I plan to spend some more time on your Substack later today and over the weekend. You have a lot of great information on there.
Gosh yes! Your piece certainly suggests a high level of natural agility and adaptability. Post comments and any questions on my articles if you have them, and I'll try to respond. You're already doing what I would've suggested - put all 'shoulds', 'musts' and 'ticking the list' aside. You're trusting your gut feeling, right?! So I'd say trust that over any books! ;-) Like you said, being present and reminiscing as a family& having 'you-time', is key. Take care P.s calendar planning how and when you can get a break helps ;-)
We're finding there are moments which we just haven't accommodated. Like: so and so has to go to hockey and so and so to soccer and WHO IS HOME with our eight year old and Grandmama??? Today we have a pick-up from school juggle. It feels like we get all the balls in the air then suddenly... whoops!
But I think we're getting to a place of ease. Interspersed with crazy. Staying in the moment is helpful--she's already quite unwell and realising this will get harder for her isn't pleasant.
....and these are the times you need to forgive yourselves quickly, none of us are perfect - as I say to other carer-friends, our inner critic and standards are driven by the strength of our love...the more we love the tougher we are on ourselves, sounds like you're doing your absolute best Anna de la Cruz is amazing too!
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.
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 ❤️
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…
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.
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
This is beautiful ❤️. Thankyou for the distillation. (I love a good list)
And thank you xoxox
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
🩵
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 ❤️
I just read the article featuring your mom and step-dad. What accomplished people they are! So impressive, all of the letters after their names! And what helpful, clear insights they shared. Brave P—so inspiring.
I’ll let them know xoxox
You will probably like The Rational Caregiver by Deborah Greenhut. Highly recommended.
Thanks so much. I’ll look for it ❤️
Thank you for this post and little list. Anyone who has ADHD, ADD or trouble focusing can take from this. I have those same silver fish flit and slither into the ether and subconscious. One thing I have learned this past year is the power of passive meditation. When I lose a thought, later, I meditate on the particulars surrounding the thought even if it’s right before bed. Often it takes me into the physical space and allows the thought to come back. It’s even come back days later under familiar circumstances, and so I rush to scratch it down in any way I can. The dream writing is a useful way to recapture the thought as well, because recently I’ve been dreaming my creative narrative. I need to practice morning pages more. I’ve abandoned the practice (I do that every once in a while for lengths of time), and when I’m diligent with them I usually can recall the flash as is scurries through my minds eye again.
Enjoy this lovely weekend. Much appreciated reading this today.
Cheers. SF
Thanks a lot, Stephan. I haven't heard of that before--passive meditation--and I like the whole concept. I enjoy those quiet moments when everyone is in bed. My mother-in-law has eased some of the night wandering now she's a little more settled, too. I'm going to try this. And I like the idea of dream writing, too.
This weekend has a lot of sunshine in the forecast. It's a beauty of the prairies and this strange winterless winter, we're headed for more plus numbers.
Thank you for writing!
Ali
I’m loving your posts btw. Going to continue to read more as they fly in.
As I engage my writing practice more I look forward to the motivation and dialogue. I don’t have near enough of that with my circle. It’s time to explore my surroundings and community of writers and creatives more. We have all hibernated so much lately that with all the things going on around us our mutual comfort and contact is more important than ever I feel. For me anyway and I’m a virtual hermit at the best of times despite my social animal outward nature when I do engage in public things.
Staying tuned. Again, have a nice weekend.
I got to the page this morning before everything and it made the day feel much more shimmery.
Oh, yes, the silver fish! That was such a great metaphor! I've never thought of trying to meditate my way into remembering a thought! Fascinating. Can you do some morning pages tomorrow? Or Sunday? I think your comment may be calling you to do some, even if you can't be "diligent"!
I'm going to. Thanks, Marika! I got up this morning and wrote which was a balm.
Marika I started my MP’s again on Feb 1. So much soup to spoon through though. Lol. I’m excited again now that I’m reading others also use them. I appreciate the comment and encouragement.
Oomph! I hear you, Alice. I've been keeping an eye out for your article. Soulful resonance, heartache and hugs. I'm relieved your Mum and you can discuss this together, but I am so sad to hear her husband also has Alzheimer's. Here, if you have questions or just want to chat. I also took solace in writing - long update emails to friends or journaling. Take care
Thank you so much, Victoria. I am grateful for how you've reached out. We've just started, and I knew writing was going to help me so much with the transition. It's interesting how all the work we've done with my son with ADHD and severe anxiety has also helped and shaped what I'm able to do. I plan to spend some more time on your Substack later today and over the weekend. You have a lot of great information on there.
Gosh yes! Your piece certainly suggests a high level of natural agility and adaptability. Post comments and any questions on my articles if you have them, and I'll try to respond. You're already doing what I would've suggested - put all 'shoulds', 'musts' and 'ticking the list' aside. You're trusting your gut feeling, right?! So I'd say trust that over any books! ;-) Like you said, being present and reminiscing as a family& having 'you-time', is key. Take care P.s calendar planning how and when you can get a break helps ;-)
We're finding there are moments which we just haven't accommodated. Like: so and so has to go to hockey and so and so to soccer and WHO IS HOME with our eight year old and Grandmama??? Today we have a pick-up from school juggle. It feels like we get all the balls in the air then suddenly... whoops!
But I think we're getting to a place of ease. Interspersed with crazy. Staying in the moment is helpful--she's already quite unwell and realising this will get harder for her isn't pleasant.
....and these are the times you need to forgive yourselves quickly, none of us are perfect - as I say to other carer-friends, our inner critic and standards are driven by the strength of our love...the more we love the tougher we are on ourselves, sounds like you're doing your absolute best Anna de la Cruz is amazing too!