A lot of the mistakes and bad decisions I make step from a good place in my heart. They usually backfire. One would think I learned my lesson but not yet. I have been thinking about taking him somewhere--after reading this I am thinking maybe not.
Allie - thank you for this comment. Not everything you try will work, but always remember you are doing the best you can - and that has to be good enough. There is no roadmap for how to live this journey, so your love has to carry you. Please, be gentle with yourself. We see you.
Thank you, the sad part of all this is he is making it more and more difficult to love him. The fights and battles everyday are wearing down whatever empathy I have for him. I have been thinking of some trips--not with him. My only goal as of late is to not move him out of the house. That will be good enough for him.
The cramped seat terrified him. The crowds were too much stimulation. His world is getting smaller and no amount of love or planning or hoping can make it larger again. That is the disease. That is not you.
I appreciated how you captured how he felt, terrified and afraid. As caretakers we often talk about what we go through, what we watch leave us, what we deal with everyday- watching someone loose pieces of themselves. But it’s so hard to watch someone feel afraid and they know things are changing for them and sometimes they can’t even put words to it, they just know they’ve changed. It’s frustrating to them. It’s painful for them.
Marcilina, thank you for your comment. There is no way really to separate what we caregivers go through and what our loved ones are. I only wish I had been able to interpret the signals he was sending earlier, so we could have avoided the pain and struggles. If I've learned anything, it's that caregivers need to be gentle with themselves - you're doing the best you can and letting your love guide you.
Thank you Helen. We do the best we can, and sometimes we fall short. But everything is coming from a place of love and that has to be enough at some point. I only wish I had been able to read the signs earlier.
Oh, my heart ached as I read this. Aching still. Fighting tears, honestly. Last summer I booked a similar trip for similar reasons and had a similar awakening to the fact that it would be our last one. I don't want to think about what might be coming. I don't want to think about a day without him. 💔
I just buried my husband and held a touching and lovely celebration of life for him. It was so difficult, but with the help of friends I was able to reach back to days when he was vibrant, whole and healthy, and hold onto those memories. You will make it - be gentle with yourself and let your love guide you.
My husband has Parkinson's dementia (a form of Lewy Body Dementia), which is different from Alzheimer's in many ways--but everything you've described here feels precisely accurate. (I often wondered how it was even possible for him to perform this kind of normalcy when, on a typical day at home, he struggled to put together a coherent sentence.) Now he's in memory care and a hospice nurse comes to check on him each week, so he doesn't have to perform for anyone. We're all on the same sad page. This is both easier and more difficult for all involved.
Pam, thank you for your comment. I walked the same path. It wasn't until Lee was in a small, dedicated memory care home and under hospice care that I finally felt the medical community saw him. Even he, as you say, didn't feel the need to perform anymore. It must have been so exhausting for him. We're on the same page, sad as it is, so we help hold each other up. Be gentle with yourself. We see you.
A lot of the mistakes and bad decisions I make step from a good place in my heart. They usually backfire. One would think I learned my lesson but not yet. I have been thinking about taking him somewhere--after reading this I am thinking maybe not.
Allie - thank you for this comment. Not everything you try will work, but always remember you are doing the best you can - and that has to be good enough. There is no roadmap for how to live this journey, so your love has to carry you. Please, be gentle with yourself. We see you.
Thank you, the sad part of all this is he is making it more and more difficult to love him. The fights and battles everyday are wearing down whatever empathy I have for him. I have been thinking of some trips--not with him. My only goal as of late is to not move him out of the house. That will be good enough for him.
Vicki,
This part you wrote:
The cramped seat terrified him. The crowds were too much stimulation. His world is getting smaller and no amount of love or planning or hoping can make it larger again. That is the disease. That is not you.
I appreciated how you captured how he felt, terrified and afraid. As caretakers we often talk about what we go through, what we watch leave us, what we deal with everyday- watching someone loose pieces of themselves. But it’s so hard to watch someone feel afraid and they know things are changing for them and sometimes they can’t even put words to it, they just know they’ve changed. It’s frustrating to them. It’s painful for them.
Thank you for sharing your story. 💛
Marcilina, thank you for your comment. There is no way really to separate what we caregivers go through and what our loved ones are. I only wish I had been able to interpret the signals he was sending earlier, so we could have avoided the pain and struggles. If I've learned anything, it's that caregivers need to be gentle with themselves - you're doing the best you can and letting your love guide you.
So difficult to read, yet so necessary.
Thank you Helen. We do the best we can, and sometimes we fall short. But everything is coming from a place of love and that has to be enough at some point. I only wish I had been able to read the signs earlier.
Oh, my heart ached as I read this. Aching still. Fighting tears, honestly. Last summer I booked a similar trip for similar reasons and had a similar awakening to the fact that it would be our last one. I don't want to think about what might be coming. I don't want to think about a day without him. 💔
I just buried my husband and held a touching and lovely celebration of life for him. It was so difficult, but with the help of friends I was able to reach back to days when he was vibrant, whole and healthy, and hold onto those memories. You will make it - be gentle with yourself and let your love guide you.
Thank you, Vicki. I’m so, so sorry. May you always be able to hold onto the memories.
My husband has Parkinson's dementia (a form of Lewy Body Dementia), which is different from Alzheimer's in many ways--but everything you've described here feels precisely accurate. (I often wondered how it was even possible for him to perform this kind of normalcy when, on a typical day at home, he struggled to put together a coherent sentence.) Now he's in memory care and a hospice nurse comes to check on him each week, so he doesn't have to perform for anyone. We're all on the same sad page. This is both easier and more difficult for all involved.
Pam, thank you for your comment. I walked the same path. It wasn't until Lee was in a small, dedicated memory care home and under hospice care that I finally felt the medical community saw him. Even he, as you say, didn't feel the need to perform anymore. It must have been so exhausting for him. We're on the same page, sad as it is, so we help hold each other up. Be gentle with yourself. We see you.
Vicki so proud of you for building community around your writing. This was a joy to see today