So, it turns out, the Palace of Joy is a suburban house - three bedrooms, two baths, living room and kitchen. Two single beds in each room. It’s the last place Jurate will move into that she is aware of. The move was made this afternoon. I don’t know if I have mentioned her decline before, but it seemed she would decline a bit, then “plateau” for some varying period of time, then drop noticeably, coming back up a bit and then plateauing at that point till the next time. Long and slot, but if you graphed it, the line was definitely down.
Damn Tom this life is a bitch sometimes. My heart hurts for you and Jurate. I look at her picture and see a beautiful woman with a spirit that glows. We had to place my mom with Alzheimer’s in a residential care home. It’s a wonderful place but I still feel like I should be the one taking care of her. But I couldn’t with my job and time away from home. She knew it was the right decision but it still broke my heart. Take care my friend and know we are all here supporting you. 💖
I cried for you, Tom. It's sweet of Jurate to not want to be a bother and so tough for you either way. Many of us have been where you are now and where you will be going. Take care of yourself.
I’ve always looked at Hospice as the well-managed transition away from this life. None of us knows what happens “after” but we can see every instance right up until that. Care for Juarte, care for you so that you both get the best of what’s left.
Holding you in my heart as you walk this last journey together.
The space, the experiences, the caring and feelings you share bring us closer together. Your tenderness within your fight, the love within you life. To you, Tom, and to Jurate, we are with you. Amen.
Very sorry to hear this. You and she are handling an impossible situation the best way you, and she can. That is all you can do. It's not enough, but out is part of life.
When I couldn’t sleep, I knew that one of my nighttime buds on substack could distract my mind. And you did. Taking me back several months to my own journey thru hell. I will say, be grateful that she could still articulate what she wanted. Alz doesn’t allow for that. Also, don’t have a wreck on the way home from the inevitable funeral. It’s the best way I know to make the worse day in your life so much worse. I wish there were words to make this more bearable, but I have none. I truly believe that the love doesn’t die, despite that “til death do us part” thing. True for kitties too.
I'm glad you reached out so we can extend our hands and offer you a virtual hug. If not tears right now, I hope that letting your words flow, and reading ours,
TC, I lost my Dad to Parkinson's March 24th, 2020. It is a cruel disease and you and Jurate have been in my thoughts daily since I learned of her diagnosis a bit prior to her sister's visit this fall.
"the Catholics were right - Purgatory exists." What a sincere and accurate elucidation of this portion of life. I felt that way even as I sat next to my Dad in the end stages of this horrid condition, for in his case his mind was also quite changed and often hallucinatory. He was gone from me, even while he was sitting next to me.
I am holding you, Jurate, and her sister in my heart as you walk this journey. Life really presents us with some very difficult times and I appreciate you sharing this with us. Please keep us posted, there are so many of us who care about you, and especially at this difficult time.
You and Jurate have done the right, if so difficult, thing. What a blessing that she was cogent enough to make the decision. And how amazing that you were able to care for her at home for this long. Sending hugs and good energy to you both, and to The Palace of Joy.
I’m crying for you, TC. And if I was there with you, we’d find a playground and swing on the swings, shoot some hoops, play some jacks, and hang out. Do that with someone. And let go of that used to be “skill” of not crying. We’ve got our arms around you.
I imagine Jurate using the sky as her palette. She will paint some amazing sun and moon scapes.
It’s possible the next time you see Jurate, there may be some comfort that she is settled for more care. What both of you are enduring is almost unbearable, but doing what we can with what we know/have at the time is all that’s possible. The Catholics did roll out purgatory, except for infants who were unlucky enough to die before being baptized, they got sent to something called “limbo.” We have you in our hearts dear TC.
Yes myself as well. My father, my grandfather, 2 uncles. Your courage is astounding. My experience is that the alternative to hospice is not the kindest, falls and unnecessary pain and trauma. Your love and kindness will ensure her safe passage my friend. Your story with her is not over. Peace.
My heart aches for you. The process of dying is sometimes sudden, sometimes long, protracted and expected. No matter how, separating from those we love is painful. May every good memory be a comfort to you and peace be with you both.
Damn Tom this life is a bitch sometimes. My heart hurts for you and Jurate. I look at her picture and see a beautiful woman with a spirit that glows. We had to place my mom with Alzheimer’s in a residential care home. It’s a wonderful place but I still feel like I should be the one taking care of her. But I couldn’t with my job and time away from home. She knew it was the right decision but it still broke my heart. Take care my friend and know we are all here supporting you. 💖
It would have broken your heart if you had spent every day with her,,, there is no escape for those with a heart, but love shines through
As Karen said - life truly IS a bitch far too many times.
And you are truly in our thoughts and prayers - for whatever good that is.
I cried for you, Tom. It's sweet of Jurate to not want to be a bother and so tough for you either way. Many of us have been where you are now and where you will be going. Take care of yourself.
I’ve always looked at Hospice as the well-managed transition away from this life. None of us knows what happens “after” but we can see every instance right up until that. Care for Juarte, care for you so that you both get the best of what’s left.
Holding you in my heart as you walk this last journey together.
You have described the essence of hospice perfectly. Hospice is personal, private, and gentle.
The space, the experiences, the caring and feelings you share bring us closer together. Your tenderness within your fight, the love within you life. To you, Tom, and to Jurate, we are with you. Amen.
So true Fern. Well put. Thank you.
Very sorry to hear this. You and she are handling an impossible situation the best way you, and she can. That is all you can do. It's not enough, but out is part of life.
When I couldn’t sleep, I knew that one of my nighttime buds on substack could distract my mind. And you did. Taking me back several months to my own journey thru hell. I will say, be grateful that she could still articulate what she wanted. Alz doesn’t allow for that. Also, don’t have a wreck on the way home from the inevitable funeral. It’s the best way I know to make the worse day in your life so much worse. I wish there were words to make this more bearable, but I have none. I truly believe that the love doesn’t die, despite that “til death do us part” thing. True for kitties too.
I'm glad you reached out so we can extend our hands and offer you a virtual hug. If not tears right now, I hope that letting your words flow, and reading ours,
helps you navigate through this difficult time.
Sending you and Jurate love and light. Your created community is with you in spirit. Take care of yourself during this difficult time.
I’m so sorry. I know it’s hard. We each have to figure out how to best get through it by ourselves. I’ve been there. You’ll be fine; somehow.
The only words I can offer are don't be sad that it's over, be glad that it happened.
Hold your memories with her close, she will always be with you.
Last sentence is the path for the love to get to you
It’s a shock, I know. You have a community here, lean on us.
TC, I lost my Dad to Parkinson's March 24th, 2020. It is a cruel disease and you and Jurate have been in my thoughts daily since I learned of her diagnosis a bit prior to her sister's visit this fall.
"the Catholics were right - Purgatory exists." What a sincere and accurate elucidation of this portion of life. I felt that way even as I sat next to my Dad in the end stages of this horrid condition, for in his case his mind was also quite changed and often hallucinatory. He was gone from me, even while he was sitting next to me.
I am holding you, Jurate, and her sister in my heart as you walk this journey. Life really presents us with some very difficult times and I appreciate you sharing this with us. Please keep us posted, there are so many of us who care about you, and especially at this difficult time.
You and Jurate have done the right, if so difficult, thing. What a blessing that she was cogent enough to make the decision. And how amazing that you were able to care for her at home for this long. Sending hugs and good energy to you both, and to The Palace of Joy.
I’m crying for you, TC. And if I was there with you, we’d find a playground and swing on the swings, shoot some hoops, play some jacks, and hang out. Do that with someone. And let go of that used to be “skill” of not crying. We’ve got our arms around you.
I imagine Jurate using the sky as her palette. She will paint some amazing sun and moon scapes.
Salud, friend. 💜✨
🗽
It’s possible the next time you see Jurate, there may be some comfort that she is settled for more care. What both of you are enduring is almost unbearable, but doing what we can with what we know/have at the time is all that’s possible. The Catholics did roll out purgatory, except for infants who were unlucky enough to die before being baptized, they got sent to something called “limbo.” We have you in our hearts dear TC.
I had 15 years of Alz limbo. Not a God thing.
Yes myself as well. My father, my grandfather, 2 uncles. Your courage is astounding. My experience is that the alternative to hospice is not the kindest, falls and unnecessary pain and trauma. Your love and kindness will ensure her safe passage my friend. Your story with her is not over. Peace.
My heart aches for you. The process of dying is sometimes sudden, sometimes long, protracted and expected. No matter how, separating from those we love is painful. May every good memory be a comfort to you and peace be with you both.