Our Last Mile

ButterflyWings

Well forum mates - friends, there have been many near-misses and false alarms on this long journey. My beloved DH has fooled us many times, or let's say trickster dementia has. Some of you will recall I saved his life at least a couple of times, knee-jerk reaction and loving instinct. And he was thought for sure to be in his last moments 2-3 times in the last couple of years. So I have stopped giving notice of his imminent demise as DH rallied to the amazement of his medical team. I am certain this is the last mile, though.

We are in a slow-motion holding pattern as I watch this precious man slip into what is known as the actively dying phase. Being unable to tell us whether or where it hurts, makes me desperately hope that the next day/days are swift for him to take his leave. I am just holding him, playing music favorites, have told him how wonderful our life has been and that he can go — wiping his face, moistening his lips and rubbing a little lotion on his skin. A gentle massage.

I have lots of helping hands, but they are out of sight unless needed, to help bring me a meal or throw away hygiene products after I change him, or just check on us/me with a hug and a smile. I have heard so many times these final months that God will bless me for what I am doing. We know, that's not why we do it. Caregiving is just what we do, with no expectation of getting anything back. As hard as it is, I always realize mine is the easy part. I have not had to live the nightmare that he is trapped inside. Losing everything. I am only losing him and our life together. But mine will go on.

Praying for his gentle release, finally, and that he will soon be running free, talking a blue streak again, and with none of these earthly restraints. Just yesterday he opened his eyes and said "Hey Pretty"! A few hours later it was "Hey" to get my attention (a welcomed, complete sentence in late stage Alzheimer's). I smiled and said "Hey" back — then was surprised to hear a part 2: "I love you". Made me tear up behind my smile. He is trying so hard, and it breaks my heart. One of his friends says they think he doesn't want to leave me. Just being together in silence as we have been for the last many months, as this is what things have deteriorated to.

Less than 95 lbs. now, skin hanging off his skeleton, I have feared his falling and breaking something since he faints easily, so the lax caregiver had to go. So…as in the mid-stages, its been just me pretty much. Homebound again. And with an even more vulnerable and dependent PWD LO. Bless his heart. I am tired and honestly in an extended period of numbness, but feeling so blessed to have shared so much quality time with the love of my life before this horrid disease began unraveling his very being. This is all so unfair, we all know.

Though I cannot begin to express how much I will miss him, I am watching the undeniable end of this last mile and just want him safe and free. Soon. Wish us luck. What a weird thing to say, but what else is there? Thank you all for all the love, shared wisdom, kind thoughts and understanding through the years. Praying and working for a cure.

wose

I am speechless and in awe of you. You’re so strong, kind and loving that surely the Lord will answer your prayers and bring peace to your DH. I am hoping that peace and comfort will find both of you soon. I was very blessed by your kind words, I only wish I had some comforting words for you at this time. You and hubby are in my thoughts and prayers.💕💙 You truly are such a blessing and comfort to him💔

SDianeL

I am so sorry. I was there last August. I have thought of you often. Praying for a peaceful passing for him and for your strength and comfort in knowing you did everything you could and lovingly cared for him. The last words my DH said to me were “ love you too Babe” I will cherish that always. Proof that love lives on even with this terrible disease. Sending love and hugs. 🙏 💜

Joe C.

BW, I’m sorry that you have reach this point in the journey. I will keep you and your husband in my prayers.

LJCHR

Praying for strength now and after. So sorry you are at this stage.

fmb

Oh Butterfly Wings! I am in tears at this news! Having gone through this just last month, I can only imagine the heartbreak and mixed emotions you are experiencing as part of you prays for his peaceful release and another part of you screams "NO!" at the thought of losing his earthly presence forever.

Your DH's words of love are such a precious gift! Roger's last words to me the day before he died were "Love you" as he brushed his lips against my cheek. I will treasure that memory forever. And like you, I sat vigil at his bedside, reminiscing about our lives together and finally giving him permission to let go, with the assurance that I will be alright. He peacefully left this world a few minutes later. I pray that your DH is blessed with a peaceful and painfree death, filled with the grace of God.

You are simply an amazing caregiver. I am in awe that you have had the strength and courage to be able to keep him at home throughout this arduous journey. Thank you for the support, wisdom and love you have shared with this community. I am praying that you receive the strength and grace you need in these final days and as you enter an entirely new phase of your earthly journey. ((hugs))

M5M

Oh my goodness, ButterflyWings….how eloquently said. Tears are streaming down my face as I read your journey. Thank yo so much for posting in the midst of these stressful last days, I think it is good to " read ahead", to see how it might go. Blessings on you and your beloved.

White Crane

Dear Butterfly Wings, I have tears in my eyes reading your post. Your love for your dear husand is so evident and beautiful as you tenderly care for him through his last mile. My prayers are with both of you. May God grant him a peaceful release from this terrible disease and grant you comfort in knowing he is free.

Buggytoo

Wishing you great peace and comfort in this final chapter.