Journey's end

MrToad

Fellow travellers on the dementia journey: for most of the last 17 years I have been a sporadic visitor here. Apologies for being out of touch so often. I have always found this place to be a great source of support on my caregiving journey and I am grateful to so many friends whose location and names I will never know. Over the years I have tried to give back as best I could, and I hope I have been of some help to a few others.

My wife Kathleen’s journey came to its end in December. It was the classic pattern of Alzheimer’s—she lost more and more abilities, until her brain forgot how to get her heart to beat. But she smiled almost until the last (a little like the Cheshire Cat disappearing completely except for his smile). It was a calm, comfortable end to a long journey.

These were the most difficult years of my life. Yet they were also in many ways, the most beautiful. I got to spend so much focused, in-the-present time with her, more loving time in these last few years than in our previous 35 years of marriage. I got to take care of my best friend so thoroughly so comprehensively. I got so close to her. I came to love her so much more profoundly.

In Better Days, I worked hard and had some measure of success in the world, but nothing I did in my first, my chosen, career was nearly as important as what I did in my second, un-sought career. I suspect that may true too for many of you, except for all you Nobel Laureates out there, and even then…

During the journey I used to say, “I miss her as she was; I love her as she is”. Now that she is gone, I recognize that I loved Kathleen far more at the end than at the beginning. It is awful that she or anyone else have to endure this journey, but I celebrate her consistent sweetness as the disease stole ever more of her abilities.

I know that not everyone’s journey is one of slow, graceful, peaceful, decline. Some are much more full of conflict. Some are much shorter. I am sorry that this is so. But I am grateful that I was able to celebrate so many days of my wife’s life, her smile, her gentle squeeze of my hand. She left in peace and it is my belief that all of her good memories have now been restored to her beautiful spirit. And I often feel her presence as I do what I can to help some other folks on the journey through the nonprofit I set up, inspired by my caregiving experience (dfsaline.org).

I can almost hear her say, “You go, Toad”.

fmb

I am so sorry for the loss of your dear Kathleen. You were an exemplary caregiver. Thank you for your beautiful essay on the grace and joy to be found in caring for those we love. I lost my beloved husband January 21, and like you, believe that caring for him was by far the most important, fulfilling and sacred thing that I will ever do in my life. I also love what you are doing in your community to support people with dementia, their caregivers and families, and wish your endeavor every success.

MrToad

Thank you. As I tell my pastor, I'm just doin' what I think I am supposed to be doin'

SusanB-dil

Hi MrToad - so sorry on the loss of your sweet Kathleen. It doesn't matter if you come here on the site a little or a lot. She was blessed to have you in her life watching out for her.

SDianeL

so sorry for the loss of your Kathleen. I lost my husband Lonny in August. I couldn’t care for him due to my cancer diagnosis and it broke my heart. Thank you for all your help the last few years. Kathleen was lucky to have you. You both were blessed with love that will endure in the beautiful memories. You honor her memory by helping others on this journey. God Bless. Please keep in touch.

Jgirl57

A long journey indeed. So very sorry for your loss of your beloved wife and I wish for peace to you and your family.

GothicGremlin

I'm so sorry for the loss of your wife, Kathleen. It's a long, hard journey, for sure.

It's been almost a year now since I lost my sister, Peggy, to this horrible disease.

And thank you for everything you do in giving back - setting up, and running a non-profit is a bit of work. I know because I did the same, although that was my day job before Alzheimer's pulled me away.

harshedbuzz

Mr. Toad—

I am sorry for the loss of your dear wife.

HB

dancsfo

I'm sorry for your loss. I wish you peace.

ALCB

I'm so sorry for your loss, MrToad. We're here for you for whatever you need whenever you need it ❤️

Beachfan

I am sorry, Mr. Toad. I remember you well! Your Kathleen was lucky to have you. I wish you peace and comfoin the days ahead. 🙏🏻🙏🏻

ronda b

So sorry for your loss of your wife. The way you explain the last years of it gives me hope and comfort.

AlzWife2023

Thank you for sharing such a beautiful tribute to your wife, Kathleen (and to the caregiver’s journey. I am proud of you! I was scared when I saw “17 years” but I also feel prepared to care for my honey if his journey is this long. I agree with all the sentiments you’ve expressed and also feel that despite the material and egoistic sacrifices caring is the best work I can do. Peace to you & I am excited to check out your website.

MrToad

Thank you friends for all your kind words. I am glad that my words have been of some help to you. I try to provide some insight, some encouragement, to others. I am often asked to talk to various groups about our bittersweet journey of love, or about how to dispel the stigma ("It's a Disease, not a Disgrace") and help persons dealing with dementia to come on out of the shadows of shame.

Accordingly, my team at Dementia Friendly Saline MI and I work to provide some enjoyable experiences for persons living with dementia and their care partners. We run social events like Memory Cafes, Dementia Friendly Movies, Dementia Friendly Live Theatre, Dementia Friendly Art Fairs, Dementia Friendly Shopping events, and our Dementia Friendly Community Chorus. And it's all because of my Best Friend's journey.

SusanB-dil

"It's a disease, not a disgrace" I like that.

Thank you for all you are doing with those experiences.