Thank you. I wish that someone had told me ahead of time that so much of my life would change with Dan's death. Yet, they could have told me and I may not have been able to understood in the way I do, now.
Beautiful piece, Janice. If only we understood, when we were young, that our beliefs would change radically and often. Maybe then we could prepare for it. You write so honestly about your life with Dan, and it resonates, not because any of us have lived it in the same way, but because you're putting yourself out there in a way that most women can relate. Especially women of our era.
Our strength is in our ability to understand ourselves better now. Not that we could change anything, but coping and adjusting are things that aren't new to us. We need to take the time to celebrate who we are and what we've come through.
I feel hope in everything you write. You've done that for me. Thank you.
Hi Ramona, Thank you! You touch on the topic of a future article, ironically. I tend to talk about what I wished to have done better, but I'm coming to the understanding of what I did manage and to celebrate the courage it took to do so - as we all should.
Thank you for this essay, Janice. I’m intrigued by you saying “I had to release my beliefs about their honesty and my ability to advocate for Dan.”
My father is in a nursing home and I feel like my ability to advocate is lacking. When I bring up my concerns, they just look at me and nod and say they will do x, y, and z and never do.
Fighting for better care for my father leaves me angry and stressed and exhausted. And if I stop fighting, I feel like I’ve failed my father.
Hi Teri, No, I really wasn't. I begged to be kept informed and to be close to Dan when he was there. They were in agreement when I challenged them, but it didn't happen. Maybe, my expectations were too high . .and in fairness it was during the pandemic which added another layer of constraints and issues.
I contacted everyone even the director of the program to get heard - maybe I should have contacted their corporate headquarters. We considered moving him, but given the dementia, he would have been even more traumatized. There was only so much I, and you, can do. Dan and your father are in their system.
I know the feeling - of having failed - it still haunts me. I wanted to be able to do more. The best I can do is know that I did everything I could - and it sounds as if you are too.
I am in the same boat as Teri with my Mom, and it is more difficult than I ever imagined. Thank you for your response to her Janice as it is very comforting. It seems the frustration is universal. Given the lack of staffing, never mind quality staff who are educated in caregiving and actually care about the elders, as well as the stresses of the medical team being totally stretched it seems hard to see a decent solution.
Sadly, I don't think this situation is going to change soon given the global demographics of the Baby Boomers aging.
Hi Donna, I had an expectation - a false one - that if I chose a quality facility and was willing to pay the financial price that our needs would be met. He was there for five months, every visit after the first, I saw decline. So, as you say this seems to be a universal issue - the nature of facilities in general - rather than the failure of a specific site. I don't know what the answer is.
I agree with Janice; it’s a systemic problem. We are paying over $9000.00 a month for my father’s care. They don’t provide physical therapy, occupational therapy, or speech therapy, even though we are willing to pay out-of-pocket. The Medicare Advantage program is a joke; it provides fewer days of therapy than plain Medicare provides. It provides fewer days in hospital as well and invariably they discharge on a Friday when the nursing home will have a skeleton staff for the weekend. I could go on, but I’ll stop here.
I guess I have to satisfied that I’m making the attempt to be an advocate, although it’s hard.
Hi Teri, I was paying $12,000 a month by the end of Dan's care. That is the point I came to - by his being at the facility, he was in their system. I did my best to advocate, to be there for him - and they would only allow so much. It was the hardest time of my life.
I appreciate how you identify the beliefs you held and how they had to change or you chose to change them. Many folks stick to their beliefs as they age and seem to struggle more than they need to on an already challenging path. I have found the work of Byron Katie very helpful, she has taught me to question if my thoughts are true and it turns out they rarely are!
Thank you, Janice, for sharing your doubts and beliefs with us. We are all going through the same thing - or will be, and it is good to know that we are not the only ones. I always believed I would die in my fifties, as I lived a rather dangerous life style. But I didn't, and I am ...ahem...well past that age and am making it up as I go along. You have helped me figure it out.
Hi Sharron, So am I - well past that age. When I was younger, I wanted to lived to be 113. Where that number came from, I'll never know and now I'm not so sure. Like you said I am making it up as I go along.
Great piece. You tell it like it is and that is most valuable
Thank you. I wish that someone had told me ahead of time that so much of my life would change with Dan's death. Yet, they could have told me and I may not have been able to understood in the way I do, now.
Beautiful piece, Janice. If only we understood, when we were young, that our beliefs would change radically and often. Maybe then we could prepare for it. You write so honestly about your life with Dan, and it resonates, not because any of us have lived it in the same way, but because you're putting yourself out there in a way that most women can relate. Especially women of our era.
Our strength is in our ability to understand ourselves better now. Not that we could change anything, but coping and adjusting are things that aren't new to us. We need to take the time to celebrate who we are and what we've come through.
I feel hope in everything you write. You've done that for me. Thank you.
Hi Ramona, Thank you! You touch on the topic of a future article, ironically. I tend to talk about what I wished to have done better, but I'm coming to the understanding of what I did manage and to celebrate the courage it took to do so - as we all should.
Great! Can't wait to read it.
Yes. Hope is Janice's gift to us.
Thank you for this essay, Janice. I’m intrigued by you saying “I had to release my beliefs about their honesty and my ability to advocate for Dan.”
My father is in a nursing home and I feel like my ability to advocate is lacking. When I bring up my concerns, they just look at me and nod and say they will do x, y, and z and never do.
Fighting for better care for my father leaves me angry and stressed and exhausted. And if I stop fighting, I feel like I’ve failed my father.
Where you able to find a balance?
Hi Teri, No, I really wasn't. I begged to be kept informed and to be close to Dan when he was there. They were in agreement when I challenged them, but it didn't happen. Maybe, my expectations were too high . .and in fairness it was during the pandemic which added another layer of constraints and issues.
I contacted everyone even the director of the program to get heard - maybe I should have contacted their corporate headquarters. We considered moving him, but given the dementia, he would have been even more traumatized. There was only so much I, and you, can do. Dan and your father are in their system.
I know the feeling - of having failed - it still haunts me. I wanted to be able to do more. The best I can do is know that I did everything I could - and it sounds as if you are too.
I am in the same boat as Teri with my Mom, and it is more difficult than I ever imagined. Thank you for your response to her Janice as it is very comforting. It seems the frustration is universal. Given the lack of staffing, never mind quality staff who are educated in caregiving and actually care about the elders, as well as the stresses of the medical team being totally stretched it seems hard to see a decent solution.
Sadly, I don't think this situation is going to change soon given the global demographics of the Baby Boomers aging.
Hi Donna, I had an expectation - a false one - that if I chose a quality facility and was willing to pay the financial price that our needs would be met. He was there for five months, every visit after the first, I saw decline. So, as you say this seems to be a universal issue - the nature of facilities in general - rather than the failure of a specific site. I don't know what the answer is.
I agree with Janice; it’s a systemic problem. We are paying over $9000.00 a month for my father’s care. They don’t provide physical therapy, occupational therapy, or speech therapy, even though we are willing to pay out-of-pocket. The Medicare Advantage program is a joke; it provides fewer days of therapy than plain Medicare provides. It provides fewer days in hospital as well and invariably they discharge on a Friday when the nursing home will have a skeleton staff for the weekend. I could go on, but I’ll stop here.
I guess I have to satisfied that I’m making the attempt to be an advocate, although it’s hard.
Hi Teri, I was paying $12,000 a month by the end of Dan's care. That is the point I came to - by his being at the facility, he was in their system. I did my best to advocate, to be there for him - and they would only allow so much. It was the hardest time of my life.
Simply heartbreaking.
I appreciate how you identify the beliefs you held and how they had to change or you chose to change them. Many folks stick to their beliefs as they age and seem to struggle more than they need to on an already challenging path. I have found the work of Byron Katie very helpful, she has taught me to question if my thoughts are true and it turns out they rarely are!
Donna, I totally agree, Byron Katie's four questions are very helpful.
Thank you, Janice, for sharing your doubts and beliefs with us. We are all going through the same thing - or will be, and it is good to know that we are not the only ones. I always believed I would die in my fifties, as I lived a rather dangerous life style. But I didn't, and I am ...ahem...well past that age and am making it up as I go along. You have helped me figure it out.
Hi Sharron, So am I - well past that age. When I was younger, I wanted to lived to be 113. Where that number came from, I'll never know and now I'm not so sure. Like you said I am making it up as I go along.