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

Thank you for putting your feelings into words. We share many experiences in the process and circumstances of loosing our husbands. It’s been seven years and I have made peace with our farewell.
I did have to leave our home, but the children and grandchildren are able to enjoy it still as a vacation home. I don’t regret the move at all, and I’m taking pleasure in the steps I take to build a new life.
You seem very balanced. I’m sure you will find your way. Best wishes and lots of hugs.

My deepest sympathy for your long journey and loss.

I think you are right about that hug. I lost my wife of 53yrs in April and I miss the hugs and hand holding and just sitting together.
There is much love and some good advice in the replies to your messages. Use your family and trusted professionals to help you through the paperwork. Try to keep up your routines and fitness and your social activity. Coffees and meals with family and friends are important as are any work activities that you still have.From chats with my friends who have also lost partners I have found that we all ‘talk’ to our missing partners as we move through the day. I have printed some favourite photos and put them around the house. In the grand scheme of things it is at times bloody awful. But at those times I get comfort from remembering some of our hugs and silly times together and that helps. My best wishes.

Welcome @loisjparrish. I see from your bio that you've participated in the Mayo Clinic HABIT program. Are you caring for someone living with MCI?

Yes, I am. My husband was diagnosed about 15 months ago. We have told our children, and he had told his sister, but not his brothers. I have confided in a few close friends.

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

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. ♥️

in reply to @hbjuniperflat I am glad that you have grandchildren to help you on your new journey. Interestingly enough, I ran into a neighbor earlier today and was talking to her about my friend who has dementia, and to whom I am her primary caregiver. My neighbor, age 85, told me that after she cared for her late husband who also had dementia, she had to take 2 months off of work just to get back to some sense of "normal." No matter how much we love those we care for with this relentless disease, it does take its emotional toll upon us.
I used the word "sacred" because with your husband in hospice, and you by his side, it reminded me of when I was caring for both of my parents, especially my mother, when they were in hospice, dying of cancer. When my mother was dying and had reached the point of "no return, no response" a sort of quietness fell upon the room, and the hospice nurse had "warned" us that at some point my mother might begin crying out for my late father, which she did. I had placed old pictures of him on the wall adjacent to her bed so that his "spirit" would possibly be there with her, and I remember being so astonished when she did cry out for him, reaching for the ceiling. I am not necessarily a religious person, but am a spiritual person, and it was only then that I began to believe that perhaps there was some kind of "intervention" that had caused my mother to awaken and cry out for my father. The hospice nurses were wonderful, and one in particular gave me specific instructions on how my mother should be carried out of the house when the undertaker came to "get" her and things of that nature. She had been bathed on her last day by the same home health nurse who had cared for my father years before, and with everything happening, I really felt it was some kind of "sign" for lack of better word. And to think that my mother and I were never necessarily close by any stretch of imagination.
After my mother passed, my sister invited all kinds of people over to the house to have dinner which I prepared, and I remember it being so loud and a bit obnoxious for lack of better word, because all I wanted to do was sit with her and play this classical music she like so much. People kept coming into her room to "look" and that really bothered me. My teenage nephew began removing things from the house and that really annoyed me.

So, sacred seems to be the correct word for your experience, simply because it is so deep and personal, the experience you had, the time you spent caring for your husband, knowing full well that he would never recover.
I remain with deep sympathy for your loss. Caregiving is something not everyone understands until they have been there, and being a caregiver for someone with dementia is especially tasking, at least in my experience. While I have in essence "lost" my best friend, I remain loyal and devoted to her simply because I don't know what else to do, even knowing that caring for her is taking its toll on my own health. I have been reminded by my doctor on more than one occasion that often the caregiver dies before the person they care for, and I am willing to take this risk, simply because my devotion to my friend is so strong. However, I have now reached out to one of her friends to tell them that my friend needs more care, and while I am willing to do what is necessary to ensure she is safe, fed and things of that nature, I have now asked for some financial compensation, something I have not done previously. I may fail at my attempt to get something in terms of financial help, but I will not give up on my friend, because this is what we do for those we love, right?

You seem like such a beautiful person, and your unwavering love and devotion to your husband is to be commended. Hold on to your strength and resolve, as I am sure you will find your way back to a more peaceful place where you can look back and say, " I did it, I stayed and I did not give up." Your strength is to be admired, because what you have been through is one of the most difficult tasks associated with being married to someone with dementia, I know this from my sister, who I hope carries through with her plans after the first of the year, Taking care of my brother in law, who will always be my hero, is taking such a toll on her that I am afraid for her own health and sanity. Her kids have tried to talk her out of it,but I think she is smart enough to realize that life as she knows it now, cannot continue. I have offered to move in with her, but she does not want me to give up my own place in case something happens to her and I am left "homeless." However, in my mind, something could always happen as we never know what the next day will bring. I have had to learn this the hard way, and I have no fear of losing my place, because if something does happen to her, I know I can always pick up the pieces and start over.
Please continue to hold on to your strength, as it shows you have a strong character, not one that many these days.
Be blessed and you will find joy again, it may just take time, which I bet you will use wisely.