Thank you for your essay, which I found via Cori Carl and the Caregiver Gateway.
Although most adults say they want to stay at home for 'as long as possible', my experience with loved ones has changed my mind. I want to go to residential care while I still have enough mental capacity to adjust to the change and to form new relationships.
I waited until it was a safety issue with my latest elder, and now I see that she was overwhelmed and anxious a lot of the time for her last year 'at home' but has relaxed and is happier after a short adjustment period.
I've also seen that a partner or children, once relieved of the weight of 24/7 care, can relax into simply spending time with you as a partner, or as a child, and not as a carer first and foremost, and that can be a precious, precious gift for both of you.
Michelle, thank you for sharing your experiences and reflections. I agree wholeheartedly with you that residential care can be such a gift.
In my family's experience, aging at home sounded good in theory but was a whole different thing in practice -- especially exhausting for my dad as he tried to keep house, shop and make meals while caring for my mom.
When my parents moved into the retirement community, they landed in assisted living (Dad's independent living + Mom's need for memory care = assisted living). In their case it meant that housework and meals were taken off Dad's list of to-dos, and there was help available for getting Mom dressed and other activities of daily living.
But Dad continued to work pretty hard watching over her. I don't think he even realized how hard he was working, and we had to really push him to add in some respite care and friends, in addition to me often being there, of course.
All that said, I think our imperfect setup worked as well as we could have hoped for given our family's needs, desires, quirks and (dare I say it?) disfunctions. In retrospect, the most helpful thing of all was that our underlying relationships were able to withstand the many negotiations involved.
I recently found out I have the worst possible genetic combo for Alzheimer's (APOE e4 double variant). I wrote about it in my piece Will My Brain Betray Me? And I talked about what I would want from my loved ones if the worst happens. But I didn't think of all of these 16. Thanks for sharing.
Leslie, I'm so sorry to hear that and am very interested in reading your piece to learn how you engaged with that news and your thoughts on it. Thank you for sharing this. I'm praying that the worst will never happen and sending warm wishes your way.
Great resource, thank you for sharing. I think the more we can talk about the difficult what ifs and wishes when it comes to aging and dementia, the better the possible outcomes for everyone. ❤️
Yes, Anna, I completely agree. To quote Mr. Rogers, "anything that's human is mentionable, and anything that's mentionable can be more manageable." How many times have we found that to be true?
I would make lunch for my mother-in-law and we would eat together. Minutes later, she would ask me when we were going to have lunch. I told her we already did. This happened over and over until I finally said, "Okay, let me make lunch for us." And I did and we ate again. Oh well.
Thank you, Rachel — I’m glad to hear you see the love <3!
And amen to No. 9. I was initially going to focus today’s post completely on the importance of in-home and respite care … and will circle back to that in the future. It’s such an important topic.
Early on have a "Goals of Care" Conversation. My husband wanted three things, to live in our house as long as possible, to avoid going to a facility if at all possible, and to sleep in the same bed with me.
Thank you for your essay, which I found via Cori Carl and the Caregiver Gateway.
Although most adults say they want to stay at home for 'as long as possible', my experience with loved ones has changed my mind. I want to go to residential care while I still have enough mental capacity to adjust to the change and to form new relationships.
I waited until it was a safety issue with my latest elder, and now I see that she was overwhelmed and anxious a lot of the time for her last year 'at home' but has relaxed and is happier after a short adjustment period.
I've also seen that a partner or children, once relieved of the weight of 24/7 care, can relax into simply spending time with you as a partner, or as a child, and not as a carer first and foremost, and that can be a precious, precious gift for both of you.
Michelle, thank you for sharing your experiences and reflections. I agree wholeheartedly with you that residential care can be such a gift.
In my family's experience, aging at home sounded good in theory but was a whole different thing in practice -- especially exhausting for my dad as he tried to keep house, shop and make meals while caring for my mom.
When my parents moved into the retirement community, they landed in assisted living (Dad's independent living + Mom's need for memory care = assisted living). In their case it meant that housework and meals were taken off Dad's list of to-dos, and there was help available for getting Mom dressed and other activities of daily living.
But Dad continued to work pretty hard watching over her. I don't think he even realized how hard he was working, and we had to really push him to add in some respite care and friends, in addition to me often being there, of course.
All that said, I think our imperfect setup worked as well as we could have hoped for given our family's needs, desires, quirks and (dare I say it?) disfunctions. In retrospect, the most helpful thing of all was that our underlying relationships were able to withstand the many negotiations involved.
I recently found out I have the worst possible genetic combo for Alzheimer's (APOE e4 double variant). I wrote about it in my piece Will My Brain Betray Me? And I talked about what I would want from my loved ones if the worst happens. But I didn't think of all of these 16. Thanks for sharing.
Leslie, I'm so sorry to hear that and am very interested in reading your piece to learn how you engaged with that news and your thoughts on it. Thank you for sharing this. I'm praying that the worst will never happen and sending warm wishes your way.
Great resource, thank you for sharing. I think the more we can talk about the difficult what ifs and wishes when it comes to aging and dementia, the better the possible outcomes for everyone. ❤️
Yes, Anna, I completely agree. To quote Mr. Rogers, "anything that's human is mentionable, and anything that's mentionable can be more manageable." How many times have we found that to be true?
Aw love Mr. Rogers ❤️
A Gen X icon!
I would make lunch for my mother-in-law and we would eat together. Minutes later, she would ask me when we were going to have lunch. I told her we already did. This happened over and over until I finally said, "Okay, let me make lunch for us." And I did and we ate again. Oh well.
Oh, Susan, yes, there's the solution, hard as it can be to enter into that other world. What a wonderful daughter-in-law. <3
Thank you for the 16 things. I champion number 9 - don't feel bad or guilty if you can't care for me 24/7 - find help or a new place to live.
Plus, I love your newsletter photographs, they show so much love.
Thank you, Rachel — I’m glad to hear you see the love <3!
And amen to No. 9. I was initially going to focus today’s post completely on the importance of in-home and respite care … and will circle back to that in the future. It’s such an important topic.
Early on have a "Goals of Care" Conversation. My husband wanted three things, to live in our house as long as possible, to avoid going to a facility if at all possible, and to sleep in the same bed with me.
Anna, this is such an important suggestion. Thank you for sharing your experience and your wisdom here. I feel for you both.