When Mr. J was first diagnosed, A and D took us out to dinner every Thursday. And every Tuesday A would send me a text saying, “I’m picking up takeout from HERE. What can I pick up for you and Mr. J?” It took me three months to realize she was doing it every single week. I was in such a fog, and having her feed us twice a week was so welcomed. It taught me how to do that with other people in need. Yes. I am very, very blessed. But also, Teyani, as I have said before, blessed by having you and other Substackers stand by and witness and cheer me on and offer advice. Thank you.
I'm so glad you have friends who are able to just roll with the changes in Mr. J's behavior. All too often, caregivers end up isolated because people aren't comfortable dealing with those changes and/or start getting worried about how to respond--so they just don't. Having a strong emotional safety net is hugely important on this journey. ❤️
Me, too!! A and D are a treasure to us. (The rest of those who are still in touch can be counted on one hand, but we are grateful for our whole almost handful!) And I have you, Pam, and others here at Substack who make this journey so much easier! Thank you for your friendship. I appreciate you.
“A thousand tiny cuts” is a perfect descriptor for so many aspects of this journey. Cuts to your heart. Cuts to his abilities, his brain, his memories it goes on and on. But there is always something to be thankful for, isn't there? Even if we have to dig for it. And in this piece, I see it’s your good friends. What a gift. And I like the way you coach them. I’m going to start doing that too. Thank you, Anne. ❤️
Thank you for your kind words. I find that a simple, preferably non-emotional recitation of what is coming next eases the way for everyone. I hope it works well for you. The trick is making sure you are out of Mr.’s hearing. And yes, you can always find somethiing to be grateful for - even if digging for it is required.
Hugs, hon. We get waaaay too good at pivoting in the moment while pieces of our heart get sliced. You and MR J seem to have had a good time, but I can imagine how much you've had to keep inside. I hope you get a chance to shake off the 'yuck' feelings... they can be overwhelming. I learnt to literally dance it out because my pillows can't take any more frustrated punches. What do you do to release the pain?
Releasing the pain, for me, comes in fits and starts. Sometimes I shake my body like my Great Danes do. Sometimes, I pretend I am an Olympic long jumper, (without the running part) and jump forward as far as I can. If I do this between six and ten times, it tends to shake off my pain - or at least temper it. I also walk for 30 minutes almost every day, which is a good, consistent movement that my body has come to cherish.
Yes. I am fortunate that Mr. J does not currently require full time in person care the way he did in the beginning. I am also lucky to have a treadmill in my house so that, when I am no longer free to leave the house, I can still get my steps in. There are always things to be grateful for!
“A thousand tiny cuts”. Is that why my heart is so wounded?
I find it hard to describe those aberrant moments. They feel like a punch stopping me inside yet outside I’m thinking of how to normalize.
So glad that you have friends like A who know how to simply be pres3nt, and lift the burden off your shoulders for a moment or two
When Mr. J was first diagnosed, A and D took us out to dinner every Thursday. And every Tuesday A would send me a text saying, “I’m picking up takeout from HERE. What can I pick up for you and Mr. J?” It took me three months to realize she was doing it every single week. I was in such a fog, and having her feed us twice a week was so welcomed. It taught me how to do that with other people in need. Yes. I am very, very blessed. But also, Teyani, as I have said before, blessed by having you and other Substackers stand by and witness and cheer me on and offer advice. Thank you.
Hang in there please.
Thank you. I am doing my best. Most days I am pleased with my abilities. Some days, not so much. But for now, overall, I am hanging in!
I'm so glad you have friends who are able to just roll with the changes in Mr. J's behavior. All too often, caregivers end up isolated because people aren't comfortable dealing with those changes and/or start getting worried about how to respond--so they just don't. Having a strong emotional safety net is hugely important on this journey. ❤️
Me, too!! A and D are a treasure to us. (The rest of those who are still in touch can be counted on one hand, but we are grateful for our whole almost handful!) And I have you, Pam, and others here at Substack who make this journey so much easier! Thank you for your friendship. I appreciate you.
“A thousand tiny cuts” is a perfect descriptor for so many aspects of this journey. Cuts to your heart. Cuts to his abilities, his brain, his memories it goes on and on. But there is always something to be thankful for, isn't there? Even if we have to dig for it. And in this piece, I see it’s your good friends. What a gift. And I like the way you coach them. I’m going to start doing that too. Thank you, Anne. ❤️
Thank you for your kind words. I find that a simple, preferably non-emotional recitation of what is coming next eases the way for everyone. I hope it works well for you. The trick is making sure you are out of Mr.’s hearing. And yes, you can always find somethiing to be grateful for - even if digging for it is required.
Hugs, hon. We get waaaay too good at pivoting in the moment while pieces of our heart get sliced. You and MR J seem to have had a good time, but I can imagine how much you've had to keep inside. I hope you get a chance to shake off the 'yuck' feelings... they can be overwhelming. I learnt to literally dance it out because my pillows can't take any more frustrated punches. What do you do to release the pain?
Releasing the pain, for me, comes in fits and starts. Sometimes I shake my body like my Great Danes do. Sometimes, I pretend I am an Olympic long jumper, (without the running part) and jump forward as far as I can. If I do this between six and ten times, it tends to shake off my pain - or at least temper it. I also walk for 30 minutes almost every day, which is a good, consistent movement that my body has come to cherish.
Walking is always good, but it's difficult to plan in, so I do opportunistic movements to temper things, too. Hugs.
Yes. I am fortunate that Mr. J does not currently require full time in person care the way he did in the beginning. I am also lucky to have a treadmill in my house so that, when I am no longer free to leave the house, I can still get my steps in. There are always things to be grateful for!