Monday, April 29, 2019

Further Progression; Sorrow Mixed with Moments of Joy

I don't know how else to say it. It's so incredibly sad. Some days it hits me harder than others. The last week or so has been especially difficult.

I have updated the progression of dementia page, which you can read by clicking here. There are more changes of course, but it just seems to be happening all too fast. I'm just not ready to let him go.

I look at him and see how precious and how vulnerable he is, relying on the good will of others to look after him and take care of his every need.

I had my yearly physical with Dr. S. last week. It brought back memories of how two years ago she saw Jim for the first time.  It's a vivid reminder of how he went so quickly from the moderate stage to where he is today, at the end stage of dementia.

Jim is profoundly tired these days. He sleeps well at night. He takes a nap between breakfast and lunch at my request. I always hope that he will be rested enough to stay awake for lunch and for the afternoon. But lately he has been falling asleep right after lunch. He is not on any medications that could be causing this; apparently it is simply the progression of the dementia.

Sometimes while he is sleeping I lay on the bed next to him with his head resting on my chest. It's incredibly beautiful. I look at him and it almost feels normal. He doesn't look any different; he is still my very handsome, loving husband whom I adore. For brief moments I can almost pretend we are at home in our own bed, snuggling together like we used to.

And sometimes he opens his eyes, he smiles at me and snuggles in even closer, making a contented sound of "hmmmm". How sweet is that.... So in spite of my deep sorrow, I still have these incredibly beautiful moments that I will cherish forever.

I found an interesting website  that offers a description of the later stage of dementia. It's not much different from Fisher's stages, but it does mention a study where brain scans of meditating monks were found to be similar to those in end stage dementia. The contentment and peacefulness that Jim seems to be experiencing at this stage correlates with this finding.

The vacant look in his eyes is more frequent. It is almost as if he is looking right through me. It's not all the time of course, but more often than it used to be. It brings to mind that I must remember and cherish these moments when we do connect, so that I will always have that in my memory.

I received a lovely email from a reader recently, thanking me for my blog. Her dad has dementia, and she and her mom have been helped by reading through the different posts. What a lovely recognition! It made my day.

Thanks for stopping by. I so appreciate each one of my readers.


21 comments:

Kay said...

Thank you for your beautiful posts, Carole. I’m so in awe of the love you both share for each other even with this devastating illness.

Carole said...

Kay, I'm grateful he has moved beyond the middle stage. That period of time was so very difficult for him. He had so much anxiety, it was hard to watch. He seems so much more at peace now. And even though it represents a progression of the disease, I like to think that he is suffering less at this point.

Your trip to Japan sounds lovely! I enjoy your blog.

Mary said...

This is so sad, but you’re fortunate to have those blissful moments still. They will carry you through someday. You two have had a closeness that many more have not. How lucky!

DJan said...

I have followed the progression of the disease through your blog, and I appreciate having gotten to know you both through it. I am just happy that you have these moments together, even now. It breaks my heart that this awful disease exists and takes our loved ones away from us. Thank you for writing this blog, for all of us.

Friko said...

Dear Carole,
as someone who has recently gone through this process (albeit for 6 months rather than years) I recognise every sign you mention. Appreciating the good moments is really all you can do and when there are bad moments you know why and know to forgive and disregard them. It is so wonderful that you can still be close, mentally and physically. These memories will help you to get through, maybe not at first but certainly later on when time has passed. These memories sustain me now, I think I must have been the luckiest woman alive to have these memories and to have had a wonderful marriage, which, strangely, goes on still. I now feel as if he is here with me, in the background, but as a benevolent presence.

I remember holding hands, kissing, listening to music, stroking each other, during the last few weeks and those are the thoughts that warm my heart. My Beloved knew me until two days before he died. I am so blessed to have that.

Courage, my dear. You too have much to look back on to sustain you when the time comes to say good bye.

My very best wishes are with you.
Ursula

Arkansas Patti said...

It seems that while this stage may be so hard for you, at least it seems to be peaceful for him and those special moments of recognition have become so precious. My heart goes out to you both.

Carole said...

Mary, Yes! I appreciate what we have, the loving bond that draws us close. I can't imagine what it would be like to go through this with someone that you did not love. I am fortunate to have these memories to cherish for ever.

Carole said...

DJan, Thanks for your kind words. It's strange, that even though we've never met we feel like we know each other. And in many respects we do! I think that I were to run into you on the street I would immediately recognize you, and we would have much to talk about (I love both of your blogs!).

Still finding the silver lining. And I expect to do so every day as the future unfolds before us.

Carole said...

Ursula, Your comment means the world to me. I remember only to well when you would write of your journey with your beloved. Thanks for sharing your experience with me. I especially appreciate your comment that your wonderful marriage continues, and that you feel his benevolent presence. I will always remember this, and I know it will help me through the even more difficult times ahead.

Your memories of the last few weeks are so touching. I'm looking to your guidance to help me through this difficult time, as I prepare myself for the inevitable farewell.

Carole said...

Patti, the part about comparing his state of mind to that of deeply meditating monks is so reassuring to me. He is no longer struggling and he seems to be content, peaceful, even happy at times when I see him smile. So grateful for every day I still have with him.

Cathy said...

Many years ago I walked this path with my Aunt - no other family in our state so I was the chosen one. Hers was a faster decline than your loved one but similar in so many ways.
I've been a 'silent reader' of your writings for a long time, can't remember when I first noticed your postings but have enjoyed (if that's the correct term) and almost looked forward to each and every one. Not for the ghoulish effect but to admire the love and dedication you have for and to your 'Jim'
Take care
Cathy

Carole said...

Cathy, Thanks for letting me know! I know exactly what you mean. There are a couple of other dementia blogs that I follow, and I too, look forward to the posts. Living with dementia is a human interest story, and for those of us with personal connections, such as you and I, it is helpful to read of others' experiences.

Your Aunt was fortunate to have you. Take good care Cathy.

Jabberwalky08 said...

Oh, Carole, again thank you so much for these tender words framing such sorrow. We all have more support and encouragement, because of your writing, as we travel along this strange road.

Carole said...

Jabberwalky, You too, know the heartache of this journey. I'm so grateful we are able to support each other and commiserate along the way. It makes a world of difference; I can't imagine going down this road alone.

Mage said...

I too am a great fan of your blog. Thank you.

Carole said...

Thanks Mage! This is a tremendous community of caring folks; the support from everyone has helped to make this journey a little easier.

Tehachap said...

I follow your blog for the strength and connection I receive from you through it. We finally met with the new neurologist today. One more test has been ordered. I will continue to hold fast to hope... hugs to you. Enjoy each precious moment with Jim.

Tehachap said...

p.s. Could you share the blogs on dementia that you've found helpful?

Carole said...

Hi Tehachap, So glad you finally had the appointment with the neurologist. This will hopefully give you and your hubby the information that you need for going forward.

The two blogs I've found helpful are Caregivng in the Forest https://jabberwalky08.wordpress.com and Alice in Memory Land https://aliceinmemoryland.com . I also find great information from Welcome To Dementia Land https://welcometodementialand.com

There are links on my blog's sidebar to all three of these blogs as well.

troutbirder said...

So fast so fast for him Almost 8 years no for my Barb. And now the last six months so fast. We're entering the final stage now. MAYBE ANOTHER YEAR. Iv had a long time to get ready to prepare for it. Plans for my future, friend neighbors and former student in a small town to look out for me and yet.....? I WANT TO HOLD ON A BIT LONGER... ray/Troutbirder. Hang in there Carole....

Carole said...

Thanks for your comment Ray. I so relate to your comment about wanting to "hold on a bit longer". No matter how much we prepare ourselves for the inevitable, it still is just so very hard. You and Barb have had quite the journey together these last 8 years, and now rounding the corner to the final stretch. It's all so hard. I'm glad you're thinking ahead to friends and neighbors who can help you.

Sending lots of good thoughts your way and wishes for a peaceful rest of the journey for both of you.