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The Last Phase of the Caregiver's Journey...

Caregivers: Dementia | Last Active: Dec 2, 2023 | Replies (18)

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@frances007

in reply to @hbjuniperflat You are an amazing woman with a tremendous amount of courage, and I share your grief. Being a caregiver to my best friend is difficult enough, but I cannot imagine how it must have been for you to have a spouse with this horrible and unforgiving disease that only progresses and leaves one without any hope. My sister is going through the same thing with her husband to whom she has been married to for 53 years, and has finally decided to place him in a facility after the first of the year. I was watching a movie last night, in which a couple got married, and as the marriage vows were being said back and forth, I thought to myself, "wow, there are people in this world who really take those vows seriously" like you and my sister. I have never been married, so I cannot speak from personal experience, but I commend you for your dedication to your husband, your strength to do the right thing for him even if his demise has left you with an overwhelming sense of loss and grief. If things happen for a reason, he obviously chose you to be his wife because of who you are and what you did for him, even knowing that there was little hope of a recovery. I am deeply sorry for your loss and I wish I had just the right thing to say. However, your experience is so personal and perhaps even sacred, and only you will be able to navigate the path of time, and hopefully at some point you will be able to find some inner peace to be able to enjoy what sounds like a lovely place to be/live. Let the quietness surround you and the answers will come.
"Your heart knows the way, Run in that direction." Rumi

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Replies to "in reply to @hbjuniperflat You are an amazing woman with a tremendous amount of courage, and..."

Thank you so much for your kind words of encouragement. I found your use of the word sacred very interesting. As my husband was moving from “transitioning to actively dying” ( according to the hospice nurses), I remember being upset by a loud, boisterous relative who had come to say his goodbye to my husband. His joking and laughter was really getting to me as I felt like my husband, who was unresponsive by then, was lying in a sacred place. Maybe I was just too emotionally drained by that point, but I also remember asking someone to invite the loud relative to another room in our home in order to return my husband’s space to a more serene environment.

I can understand why your sister would need to place her husband in a care facility. Caring for someone 24/7 is a daunting task that can go on for a very long time. It certainly takes a toll on the family member(s) who are in that role. Fortunately, I was able to keep my husband at home to the very end, which was our desire, but before I truly knew he was nearing the end of his journey, I was worried that I was reaching the point where I could no longer keep him safe at home. Sometimes I felt like I was living with, and suffering from a disease I didn’t even have… my prayer during those times was to ask that there would be enough of me left at the end of our Parkinson’s/LBD journey to find joy again. I have five beautiful granddaughters who are now helping me to begin transitioning to a life outside of my caregiving role. ♥️