Saturday, July 6, 2019

Transition....

I knew it would happen eventually. Just wasn't expecting it quite so quickly. The betrayal of his physical body and his brain...he didn't deserve that. No one does.

This is a very hard post for me to write. The last couple weeks of his life things moved pretty quickly.  The dementia had spread to his brain stem, the part of his body responsible for the very basic functions of life that we take for granted; ability to swallow, breathing, and functioning of his heart.

It is too raw and painful for me to share all of the details of the end of his life, but I will tell you that up until the last two days of his life, he was still able to let me know that he felt my presence. At the end, I was spending all day and night, not wanting to leave his side. I would sleep right next to him in his small single bed, and he would snuggle right up to me, as if acknowledging that he knew I was there.

The last day of his life, my sister stopped by for a visit in the afternoon. She has experience as a hospice nurse, and her presence was very comforting. She left after a couple of hours. At that point I just crawled into bed with him, totally exhausted myself and just wanting to be close to him. I sensed that he was near the end. I laid my head on his chest and just closed my eyes, just resting, not sleeping. Just the two of us, with me holding him in my arms. I suddenly realized that his chest was no longer rising.

I like to think that he chose that very special moment in time to transition from his body. Physically together and holding him close for the last time. It was all very surreal. But also very peaceful.

Shortly thereafter, two very dear friends (who didn't know each other before that day!) Amy and Camille, came by. They both had planned to stop in for a visit. Little did they know that their timing was nothing short of a miracle. They helped me with some of the more practical things that had to be done. And then Amy followed me home and stayed for a while to make sure I was ok.

The last two weeks have been a blur. Phone calls to be made, final details for arrangements...all the things that must be done at a time like this. Calling hours were a blessing I never expected. So many people came; the consoling words and the many wonderful and kind things that were shared about him really touched my heart.

Family and friends have been amazing. So grateful for their kindness, caring and support. Dr. M. has been with me every step of the way. Her reassurance that I did not have to travel this sad journey alone, that she would be there to support me, has given me so much comfort and encouragement. I was able to share my deepest sorrows with her, knowing that she provides a soft place to land, during this very difficult time of life.

Jabberwalky, who has walked this journey for a very long time has been an incredible support to me as well. Having a spouse with dementia, she knows first hand how difficult it can be. Our email correspondence has helped both of us to keep our sanity. It helps so much to know that someone else really knows and can relate to the heartache  of watching a loved one succumb to this disease.

My sweetheart. His body and his brain failed him, but his soul is within me. I feel his presence. Every day I feel his love, his gentle kindness and his soft voice telling me that he is still here with me. It's the guy I fell in love with; the dementia has him no more. He is finally free of this cruel disease..

Gratitude:

*  He found a way, even at the very end of his life to let me know that he was still there!

*  My hairdresser Lisa, who came every 4 weeks to cut his hair. They had a very special connection, and one of the sweetest things she said was that she would still come to see him even if he was bald!

*  Healing relationships. A gift from him that I never expected; his illness and passing has brought family members even closer together.

*  Gifts of love and caring from friends and family. The thoughtful phone calls, visits, offers of help; all so appreciated.

*  He is still with me. I hear his soft voice, reassuring me, telling me he loves me, and letting me know that he'll be with me as I transition into uncharted territory. I won't be alone.

*  And for you, dear readers. When I poured my heart out, you were here for me. The kindness, the thoughtful comments, and the caring has touched my heart. You reached out to me to let me know that you cared. And that means the world to me.




50 comments:

Kay said...

Ohhhh... Carole. I'm tearing as I write this. Your poignant post captures the beauty of Jim's transition and how your love and his eased his way. You have been such a loving, devoted wife, partner, friend. I'm so sorry for all the pain you are going through, but I'm glad so many people are coming to comfort you at this difficult time. I'm sending all my love from across the ocean.

Carole said...

Thanks Kay. I feel fortunate to be so supported. One of the more challenging things for me on this journey was asking for and accepting help/support. I'm the kind of person who doesn't like to impose on others. But I did as for that support and was so blessed with the response of others. In retrospect, I think it was a gift to them, as much as it was to me.

Friko said...

Poor dear Carole, there was no other outcome, you knew that. But now, that is has actually happened it must have been a great shock. I remember I just didn’t believe it when Beloved actually died, really and truly died, didn’t just temporarily take a break but left, completely and finally. And still, he is with me at all times. Always will be. As your dear husband will be. It doesn’t change, it cannot change when we, who are left behind, have had such a wonderful closeness with the person just gone.

You have a rocky road ahead, but you are strong and you will find a path through. And you will have memories nobody can take from you. Those memories are my companions now and they make the days easier to bear. I hope that you too will find that to be true.

Carole said...

Oh Friko, you know only too well the grief of which you speak. I hold on to the cherished memories we shared. And I believe the only thing that keeps me going is knowing that he is still with me. I feel his presence and it will help me in the days ahead as I find my way again.

Arkansas Patti said...

When you hadn't posted in a while I so feared this outcome. Even when forewarned, it is still a shock. My heart goes out to you but am grateful that you were with him all the way and that he knew it. I am ever so grateful that you do have support at this painful time.
Rejoice that you two had a love so few get to experience. Lean on those who offer and don't be afraid to reach out. Jim is at peace and I pray that you can feel some of that yourself.
Hugs from Arkansas.

Carole said...

Patti - Indeed, I am so grateful for the love that we shared. He was a psychologist. Later in life he had more of an administrative role, but still was in human services. I was so touched by people who knew him professionally, as they would share stories of how he made a difference in so many lives. His quiet, gentle personality offered support and help to so many people.

Thanks for your kind words. I feel those hugs.

jalna said...

I'm so sorry, Carole. My heart is heavy for you. Thank you for having allowed us to be a part of your journey.

Tehachap said...

Oh my word... not what I expected to see/read. Tears are falling as I write this. I thank you from the bottom of my heart for sharing your journey with me. As you say, I knew it would come to this, but when it happened, I wasn't expecting it. May God bring you comfort.

DJan said...

I knew as soon as I saw your email in my inbox. After the last post, it seemed it wouldn't be long before he would be unable to continue on in his body as it was. I know, as you said so eloquently in this post, that he is no longer in the grip of that dreadful disease, and that his spirit continues on, in all of us in some way. I grew so close to him through your posts that I felt I knew him a little. And you are so blessed to have a support group surrounding you in this terrible time. I wish only the best for you in the days ahead. Please don't stop writing, at least some update now and then. I send you my love along with all the others who love you. I have cried for your pain many times, and the tears flow easily now.

Carole said...

Jalna, Thanks for your kind words. It has been quite a journey, one that had me frequently questioning myself, if I was doing the best I could for him. But I am now at peace, knowing that I did the best I could to support him along the way. And I believe that he would think so too.

Carole said...

Tehachap - Thanks Carol for your sweet comment. I know that you too, are facing some challenges ahead of you in the years to come. Your husband is fortunate to have you there to walk beside him.

Grief - I experienced it with every loss that he suffered over the years. I grieved for him, and I grieved for me. Now it is different. Hard to explain. Part of me is comforted by the fact that I believe he is still with me. I feel his presence and the calmness that was always part of his sweet personality. But I grieve the future that we will not have; a future of good health and exploring our retirement life together. But it wasn't in the cards for us. So I'll go forward with my life, knowing that he'll always be with me, guiding me and loving me all of the way.

Carole said...

DJan - Your words really touch my heart. Indeed, tears flow easily these days. I have found great comfort from the poet Mary Oliver, specifically Red Bird, and Evidence. When she lost her spouse of many years, some of her poetry reflected her life following the death. She has been described as a keen observer of the natural world and her gratitude for its gifts. Nature is a big part of her poetry.

Also, I have found peace in reading the works of Thich Nhat Hanh. Specifically, I'm now reading No Death, No Fear. The Buddhist teachings offer so much comfort for times such as these.

One of the things that really touched my heart...The two days prior to his death, staff would stop in, one by one to say their good byes, tears streaming down their cheeks. Hugs and comforting words exchanged. We really were part of a very caring family at Iroquois.

Amy said...

Carole, I'm so sorry for the loss of your sweet husband. Like a commenter above, I feared the worst after your last post. My prayers are with you and your family at the end of this heartbreaking journey.

Carole said...

Amy, thanks for your kindness. I'm so touched by the tenderness and thoughtfulness of you, and all my readers. The support has been so helpful through all of this.

Anonymous said...

May God Rest His Soul and now a new Journey begins for him as he evolves and becomes more than he was. I'm glad that he is with you - I too can Sense that he is and he will always be with you. I can See him smiling knowing that he's finally free of his fragile body. It is wonderful to see a love that endures beyond time and beyond life. God bless you ! -N

The Invisible Woman said...

Carole, your journey has been an inspiration to me. I hope to be as strong as you if my beloved husband is ever stricken with dementia. Honestly, you’ve reminded me of how much I need to love him now - before the real challenges start. Thank you for including complete strangers in your struggle.

Snoskred said...

I'm so, so sorry for the loss of your sweetheart. Much love to you.

Anonymous said...

My deepest condolences to you Carole. My thoughts and prayers continue to be with you at this very difficult time. I've been a frequent visitor of your blog since your first posting. Your blog attracted me, for my late grandfather also suffered this very cruel disease. He transitioned in 2017. Before his passing, my mom was his caregiver since his early stages of dementia. One afternoon, I stumbled upon your website and immediately called to inform my mom of your blog site. Through you and your sweetheart, we learned so much about dementia that we never knew about. Seeing and hearing the progression of what my grandfather and Jim went through is beyond words. But, I will pray to grandpa that when he meets Jim, to take great care of him and to show him around Heaven! Please take care of yourself and continue to blog. Hugs to you Carole

tahoegirl.blog said...

It is a profound and sad period of your life. You helped the love of your lineal the way to his final moments. That is bravery in it's finest. Knowing you were there with Jim is such a beautiful thing. Take care. And thank you for sharing this journey.

Barbara said...

Thank you for sharing this journey with us. I feel that if someone I love is ever in this situation I will be much better prepared to understand what happens step by step. I am so sorry for your loss and can't imagine how you survived this trip. Bless you and may the Lord heal your heart with his Love.

Carole said...

N - Oh, you truly understand! Thanks for the comforting words.

Carole said...

Invisible Woman - When we're reminded that we're never guaranteed beyond the moment, it puts things into a different light. I'm so grateful that others have been touched by my blog. The heart-felt expressions have been an amazing support to me. So glad that you found my blog, and joined this wonderful community of caring folks.

Carole said...

Snoskred - Thanks for your kind expression of caring.

Carole said...

Carole - Thanks so much for reaching out to me and sharing about your grandfather. It is deeply gratifying to know that my blog may have helped others in some way. At the memory care unit, I was so happy to have to opportunity to help the new family members understand this disease, and ways they could still support and care for their family member, in spite of the fact that residential care was needed.

So many times the unknowing think it is simply a matter of being forgetful. Oh, if only it were as simple as that. I do believe that the more we educate ourselves and others, the better the quality of life/care for the caregiver as well as the person with dementia.

I love to think of your grandpa and my husband, meeting up, sharing stories, and knowing that they will always watch over and be there for us.

Carole said...

Tahoe Girl - Thanks for your kind comment. I love your blog by the way. You too have a journey that has been challenging. Details will always be different, but we must remember that we're all in this together, supporting each other and our loved ones through difficult times in life.

Carole said...

Barbara - Thanks for your kind words. When I look at the statistics of prevalence of dementia, it makes me realize that it is more common than we realize. I think that sometimes the person or the family member is able to "cover" for quite a while, until the symptoms become more obvious and we recognize it for what it is.

It's a reminder that if someone seems off a little bit, or just not right, the response of kindness is always a winner. I'm so glad if my blog has furthered your's and other's understanding of this disease.

I enjoy your blog too, by the way.

Anonymous said...

Thank you for sharing your journey with us. It was very informative and emotional. Your love for each other will live on. Sorry for your loss.
De (a reader/follower from Hawaii)

Carole said...

De - Aloha! Thanks so much. Yes, our love will live on. I feel his presence with me, and it is so reassuring. Night time is often the most difficult. But I feel his presence and imagine him telling me that he is with me and that things will be ok.

AWmom said...

So sorry for your loss .I have followed your journey for a long time,It will be a year since we lost my mother in law to this cruel disease. God Bless you on this new journey,

Carole said...

AWmom - You know only too well how difficult this journey can be. So sorry to hear of the loss of your mother-in-law. Thank you for your thoughtful comment.

Anonymous said...

Dear Carole, What a wonderful love story! Surely you will cherish forever your last sweet moments with Jim. As others have said, thank you for sharing your and Jim's story with us through this blog. We are the richer and wiser for it. A loss for you that is inestimable. May you find comfort and peace in the days ahead, knowing you loved and cared for Jim so wonderfully right up to his last moment on earth. I hope you will take just as much care of yourself now. Becky

Carole said...

Becky - It still seems surreal at times. Waves of emotion hit me at times, sometimes when I least expect it. I miss the future we would have shared together. It's a difficult time for me, as expected. But so grateful for the supports I have in my life. Thanks for your kind words Becky.

troutbirder said...

:( So sad. Carole you have given me the insight find my way along this awful journey and the courage to face each new twist and turn in the road for that I shall be forever grateful.
Ray

Carole said...

Ray - I am so glad that i could be of help and support to you. I think of you and Barb often, knowing that things have been especially difficult for both of you, as this cruel disease takes over Barb's body. Wishing you peace and strength, as you walk with Barb on this difficult path of life.

celia said...

Carole, sincerest condolences. Celia

Carole said...

Thank you Celia.

Dr Sock said...

Oh Carole, I am sitting here with tears running down my cheeks. I am so sorry to hear that Jim has slipped away. Such a tragic loss. And yet, he’ll always be with you in your heart, and you’ll always have the happy memories of the life that you had together. With your loving care, you were able to help him through the final transition in the gentlest way possible. I’m so sorry.

Jude

Mage said...

Thank you for writing the story of your lives. I too have tears. You gave him such a wonderful final few days. Gave it to us too. Thank you.

Carole said...

Jude - Thanks for your kind comment. My life right now seems so different. I don't quite know what to do. But that is all a normal part of grieving. I'm working on being kind to myself, after having lived under so much stress, and then the trauma of losing the love of my life. I'll work through it, with the help of my therapist and close friends and family. Thanks for your support Jude.

Carole said...

Mage - It was cathartic for me to be able to write and share our story. The response from you, and all the other kind readers was a blessing I never expected. And for that I'll always be grateful. Thank you for your kind words.

Susan said...

Thank you for sharing your lives with us. You have shown me this journey can be done gracefully with so much love and courage. I can only hope and pray if and when this time comes for us, I can do and be half of what you have been. Please know I am so sorry and that you are in my thoughts and prayers.

Carole said...

Thanks for your kind words Susan. Someone said to me that the devastating sorrow experienced following death is the price we pay for having loved so deeply. Our love was a gift that we never took for granted. As the disease progressed, my heart guided me every step of the way, feeling honored to be able to be with him on this final path of his life. I'm not saying it was easy; it wasn't. So much heartache along the way for both of us as the disease ravaged his brain and body. But it never occurred to me to do anything but love him and be there for him, just as I know he would have done so for me.

Catalyst said...

I am so very sorry. But you wrote about it with tenderness and love.

Carole said...

Thanks for your condolences, Catalyst. It was a journey of love, for sure.

Love your blog, by the way. A little lightheartedness; just what I needed! :-)

gigi-hawaii said...

I am deeply sorry for your loss. But, he is there with you in spirit. Blessings.

Anonymous said...

Thanks Gigi. So grateful that I still feel his presence.

Carole

Ien in the Kootenays said...

Thank you for sharing this. I just came here from Troutbirder’s, and wish I had noticed you sooner. This may sound crazy, but in a way I envy you. Grief is the price we pay for love. It sounds like you had much of it. My husband died June 1 2018, in a lovely small care facility attached to our village hospital. He had been suffering from a disease that has characteristics of both Parkinson’s and Alzheimers. Progressive Supranuclear Palsy. All symptoms were also aggravated by profound deafness that runs in his family. I recognise much of your journey. The delusions, my goodness! If I had enjoyed half the adventures he thought I might be having it would have been an interesting time. Wishing you warmth from all the good memories and strength in healing.

dkzody said...

I had lost track of your blog and when I went looking, I found your very sad note. My condolences on the loss of your sweet husband. You traveled a very hard road. May you find some rest. I know you have consolation of your sweetheart's homogenize with you right there with him.

Perhaps, when things settle down some more, you can come back and visit here with us, letting everyone know how you are doing and getting on with your life.

dkzody said...

Wish I could do an edit on that last comment! Guess my proofreading skills are pretty poor.

>>I know you have consolation of your sweetheart's homogenize with you right there with him. <<

Should say-- I know you have consolation of your sweetheart's homegoing with you right there with him.

Tehachap said...

November 5, 2019 -- thinking of you these days and wondering how you're coping. Please consider posting again to let us know how you are doing. Hugs to you ... T