Thanks for sharing your experience, so very important, Janice! I too did not realize the multidimensional impacts on me when I took on the role of my mother's fulltime live-in solo caregiver as her dementia progressed. It took a long time, nearly a year, where I saw my life quality decline alongside hers, that I saw I needed to make some changes, and fortunately, she had the money saved to do so, and before her dementia, would have insisted I not sacrifice my well being for her, and so now she is a good memory care facility, (she's 87) but it was a wrenching decision for me as her oldest daughter and there is still grief and loss around having to make this decision but it was the only sustainable solution for both of us. Now I know she is getting well cared for, 24/7. I think you are so wise to point out the need for a plan and to be prepared but sometimes despite the best preparation we can find ourselves overwhelmed.
Hi Amy, That it is a heart-wrenching decision, the hardest one I ever made. So true, sometimes the best preparation doesn't totally address the challenges involved - hopefully, it helps to a degree.
A great review, Janice. I sent it on to my friend who is really struggling to keep it together caring for her husband with dementia, who is increasingly more mean and angry. I hope she will get help.
She is at a loss.I hope your words reach her in some way.She lives so far away...
I get this, in theory. But when we experience caregiving for the first time, we don't have that type of perspective. I got and get advice from people all the time, online and from people who know me, but when I was in the midst of what felt like constant caregiving, I was not in a place to hear it. And, like you say, a lot of it doesn't seem germane to the situation.
I've always been the type of person to try and be prepared for everything. But when I think I'm prepared for what might happen, I find I'm not at all prepared. I'd put a lot of energy trying to suss out red flags and small fires and the danger came from a completely different direction. Hindsight is always 20/20 but I think other than trying to find time for self-care, and, depending on the person one has to care for, getting all the legal documents in order, I don't know how much I could have done that would have made caring for my aunt with dementia easier.
Hi Steve, Your point is well taken. We can only be as prepared as we can be - but wouldn't you say that you were further ahead by having done that? Fortunately we had wills and powers of attorney in place prior to Dan's surgery and memory lapse. He would have agreed to see a lawyer one day and refused to go the next. Had I known more about the disease, I would have requested medications to ease his anxiety and aggressiveness, which may have eased things. At least in my situation, had I known more I might have been able to do more, had I taken better care of myself, I might have been able to keep him home longer or make it a bit easier. No matter how much we plan, though, it is a challenging task.
For sure. Beyond challenging. I was more or less thrust into caregiver role with no help other than people telling me what a great nephew I was. That comment ended up driving me crazy. I didn't live with or anywhere near my aunt (a 6 hour drive away), which was both a good and bad thing. Good in that I could have a little bit of a life; bad in that I had to drive down every 6 weeks or so to take her to doctor appointments and relieve the live-in caregiver (this was during COVID, prior to vaccines). Thank goodness for Instacart and Amazon, which kept her supplied with food and pretty much anything else she needed.
My aunt never had kids and pushed away all her friends (except one, who helped me when she could; I tried to save those times for emergencies), so it was only me who could help. I'm glad to have done it -- especially now that she's in a good memory care facility and the list of 100 items to take care of each month for her is down to a manageable 10.
I know more about Medicare and the myriad ways it's designed to screw seniors out of their money than I know about my own HMO plan. Honestly, I'm grateful that there are resources online to learn about the "business" of caring for a senior, though it's been like a needle in a haystack to find anyone at any of the support organizations in her area that can help me. It's all "waiting lists" and "we don't service that town yet."
Anyway, thanks for your 'Stack and sharing your insights.
Hi Steve, Your Aunt was very lucky to have you. It sounds like you did the very best you could given challenging circumstances. My hope is that posts like yours - and mine - will warn others of unforeseen pitfalls that can arise.
I hear you and empathise. We do our best with what/how we can with limited to no sleep. I know that part extremely well, as I was in hypervigilance mode for a few years for Dad. Hindsight can be a painful, harsh inner critic. Mum and I were blessed to have each other through Dad's care.
Today's modern systems demand that we first learn and then try to fit into whatever generic solutions they 'kindly' offer - square holes, when we each have unique, bespoke, tailored shapes. None of our situations can be neatly cookie-cut to what's on offer. So much admin, frustration and battles exist around this in the UK and from what I hear in the US too.
I hope through our publications we can raise awareness, and offer resources & support to others before they enter a crisis. An aspiration I hope for is to shift the narrative around caring from 'not-me-dom' or something to ignore/deny/ 'cross that bridge when we get there'...to something that can be entered into proactively as a community of support.
I'd like to link to this article from my publication to share your thoughts. The resources in the Family Caregiver toolbox and Caring bridge could be a great help to many others.
I'd welcome your free subscription so that we can cross-post and share more insights, and create synergies with our readership.
Janice, I recall that you read and reviewed Alfred's Journey. Now comes Hannah which btw is dedicated to my sister that I've written about who is battling Alzheimer's. Hannah's Journal is a short, quirky and (I think) fun book to read about a 15 year old girls search for happy. I am going to be taking it to a senior community to share next month (over 4 sessions). Anyway, if you are interested and willing to read and review, I happy to pop one in the mail but I'd need your address. are you willing? No pressure. Thanks. Jill
Being prepared would have made caregiving more manageable for me.
Nice post, thank you for your insights!
I'll just add here too that 'The stress of caregiving can influence the immune system, and result in reduced immune responses'
Janice, you should write the book on no. 1.
Whew, I can feel the stress of this situation in the words of this post. Once again, thank you so much Janice for this helpful info.
Thank you always for sharing your beautiful insight ❤️
Thanks for sharing your experience, so very important, Janice! I too did not realize the multidimensional impacts on me when I took on the role of my mother's fulltime live-in solo caregiver as her dementia progressed. It took a long time, nearly a year, where I saw my life quality decline alongside hers, that I saw I needed to make some changes, and fortunately, she had the money saved to do so, and before her dementia, would have insisted I not sacrifice my well being for her, and so now she is a good memory care facility, (she's 87) but it was a wrenching decision for me as her oldest daughter and there is still grief and loss around having to make this decision but it was the only sustainable solution for both of us. Now I know she is getting well cared for, 24/7. I think you are so wise to point out the need for a plan and to be prepared but sometimes despite the best preparation we can find ourselves overwhelmed.
Hi Amy, That it is a heart-wrenching decision, the hardest one I ever made. So true, sometimes the best preparation doesn't totally address the challenges involved - hopefully, it helps to a degree.
A great review, Janice. I sent it on to my friend who is really struggling to keep it together caring for her husband with dementia, who is increasingly more mean and angry. I hope she will get help.
She is at a loss.I hope your words reach her in some way.She lives so far away...
Hi Sharron I hope she does, too, it is such a challenge, in so many ways,
I get this, in theory. But when we experience caregiving for the first time, we don't have that type of perspective. I got and get advice from people all the time, online and from people who know me, but when I was in the midst of what felt like constant caregiving, I was not in a place to hear it. And, like you say, a lot of it doesn't seem germane to the situation.
I've always been the type of person to try and be prepared for everything. But when I think I'm prepared for what might happen, I find I'm not at all prepared. I'd put a lot of energy trying to suss out red flags and small fires and the danger came from a completely different direction. Hindsight is always 20/20 but I think other than trying to find time for self-care, and, depending on the person one has to care for, getting all the legal documents in order, I don't know how much I could have done that would have made caring for my aunt with dementia easier.
Hi Steve, Your point is well taken. We can only be as prepared as we can be - but wouldn't you say that you were further ahead by having done that? Fortunately we had wills and powers of attorney in place prior to Dan's surgery and memory lapse. He would have agreed to see a lawyer one day and refused to go the next. Had I known more about the disease, I would have requested medications to ease his anxiety and aggressiveness, which may have eased things. At least in my situation, had I known more I might have been able to do more, had I taken better care of myself, I might have been able to keep him home longer or make it a bit easier. No matter how much we plan, though, it is a challenging task.
For sure. Beyond challenging. I was more or less thrust into caregiver role with no help other than people telling me what a great nephew I was. That comment ended up driving me crazy. I didn't live with or anywhere near my aunt (a 6 hour drive away), which was both a good and bad thing. Good in that I could have a little bit of a life; bad in that I had to drive down every 6 weeks or so to take her to doctor appointments and relieve the live-in caregiver (this was during COVID, prior to vaccines). Thank goodness for Instacart and Amazon, which kept her supplied with food and pretty much anything else she needed.
My aunt never had kids and pushed away all her friends (except one, who helped me when she could; I tried to save those times for emergencies), so it was only me who could help. I'm glad to have done it -- especially now that she's in a good memory care facility and the list of 100 items to take care of each month for her is down to a manageable 10.
I know more about Medicare and the myriad ways it's designed to screw seniors out of their money than I know about my own HMO plan. Honestly, I'm grateful that there are resources online to learn about the "business" of caring for a senior, though it's been like a needle in a haystack to find anyone at any of the support organizations in her area that can help me. It's all "waiting lists" and "we don't service that town yet."
Anyway, thanks for your 'Stack and sharing your insights.
Hi Steve, Your Aunt was very lucky to have you. It sounds like you did the very best you could given challenging circumstances. My hope is that posts like yours - and mine - will warn others of unforeseen pitfalls that can arise.
I didn’t realize until after I read my mom’s diary how hard the caretaker job was on her. She looked so “in control” of things. I wish I had known…
I hear you and empathise. We do our best with what/how we can with limited to no sleep. I know that part extremely well, as I was in hypervigilance mode for a few years for Dad. Hindsight can be a painful, harsh inner critic. Mum and I were blessed to have each other through Dad's care.
Today's modern systems demand that we first learn and then try to fit into whatever generic solutions they 'kindly' offer - square holes, when we each have unique, bespoke, tailored shapes. None of our situations can be neatly cookie-cut to what's on offer. So much admin, frustration and battles exist around this in the UK and from what I hear in the US too.
I hope through our publications we can raise awareness, and offer resources & support to others before they enter a crisis. An aspiration I hope for is to shift the narrative around caring from 'not-me-dom' or something to ignore/deny/ 'cross that bridge when we get there'...to something that can be entered into proactively as a community of support.
I'd like to link to this article from my publication to share your thoughts. The resources in the Family Caregiver toolbox and Caring bridge could be a great help to many others.
I'd welcome your free subscription so that we can cross-post and share more insights, and create synergies with our readership.
The best advice: Not everyone is a caretaker. The second best piece of advice: Don't feel guilty when you recognize this may be true for you.
The third piece of advice: Accept it. Do the best you can for the situation and remember to take care of yourself.
Repeat number two as many times as needed. You will save yourself years of therapy.
Janice, I recall that you read and reviewed Alfred's Journey. Now comes Hannah which btw is dedicated to my sister that I've written about who is battling Alzheimer's. Hannah's Journal is a short, quirky and (I think) fun book to read about a 15 year old girls search for happy. I am going to be taking it to a senior community to share next month (over 4 sessions). Anyway, if you are interested and willing to read and review, I happy to pop one in the mail but I'd need your address. are you willing? No pressure. Thanks. Jill