Thursday, January 10, 2019

"He's Still In There!"

Jim remains in Fisher's Stage 7c of dementia. According to the website, this stage can last about a year to a year and a half. But what I have learned is that dementia progression is so different for each person.

The description of the different stages has been helpful to me, as I strive to understand the progression, what to expect, and how best to support Jim throughout this journey.

My relationships with other family members on the memory care unit help to sustain me. In October, a gentleman was admitted to the memory care unit following several serious strokes, resulting in vascular dementia. The onset of his dementia was sudden. One day he was perfectly normal, and then the next he experienced these life altering strokes. I've gotten to know his wife as well as a close family friend. The bond with these two women is very strong, as we share, support and commisserate on this journey of dementia.

The schools were closed today due to a bad snowstorm and icy roads. Last year I took chances with  driving that were not safe. I promised myself that I would use school closings as a guide for traveling the steep hilly roads to the nursing home. I comfort myself knowing that he is in good hands. The staff are very fond of him and he will receive the help he needs.

There were two deaths yesterday. One of them hit me pretty hard. The assumption is that once someone is placed in memory care, aggressive medical care is no longer provided. Comfort care becomes the norm. This all sounds so reasonable given that we are talking about a progressive fatal disease.

Jean was in her 80's, very spry and full of life. She was still able to walk with her walker. Her verbal skills were excellent. She could talk your ear off! She was one of the "higher functioning" residents. She was the queen of trivia and a strong participant in all the activities.  She developed a urinary tract infection. Unfortunately she was allergic to many antibiotics. The ones that she could take did not adequately treat her infection. If this happened to you or to me, we would have been hospitalized for stronger IV antibiotics. Her family chose not to do this, and thus the infection spread throughout her body to all of her organs, eventually taking her life.

I would never be presumptuous enough to second guess a family's decision. But I have to say that it shook me. What would I do if something like that happened to Jim? I'm not ready to let Jim go. I need him. I can't wait to see him every day. He still knows me and loves me. His tender touch, his loving eyes and his sweet kisses all tell me how much he loves me, even if he doesn't have the words to say so.

I look at Jim and see someone who still has a good quality of life. He is happy and content for the most part. He participates in activities, even if it is passive, observant participation. You can see his face light up, hear the chuckle he makes when he is amused and see him smiling when he is feeling happy.

But what would the "real" Jim say about all of this? We used to joke about "just pull the plug!" when talking about what we would want if afflicted by a devastating fatal illness. But what if that perspective has changed? Could he/we ever have imagined a good quality of life with a diagnosis of dementia?

I'm so confused; I don't know what the right answer is. I plan to talk to Dr. M. tomorrow when I see her. She has helped me through so much on this journey. Her insight, her support and her wisdom have seen me through some very tough times. So grateful for her.

Jim's birthday is coming up; he'll be 70! I'll bring a chocolate chip cookie cake and have the celebration as a part of the afternoon activity so that all the residents can enjoy the celebration and the cake.

One of my sisters came to visit Jim! The visit went well and plans have been made for repeat visits. One of the things she said to me was "He's still in there!". Yes, Jim is still in there. Although he really couldn't speak, he responded with his smiling eyes, laughter, appropriate vocalizations, and body language. Yes, he is in there.

So in spite of his dementia, in spite of his limitations with activities of daily living, speech and ambulation, he is still with me. It feels so good to be able to type those words and feel the warmth in my soul as I feel his love and his connection to me.

I will tell you that Blogger STILL is not letting me comment on my own blog. How crazy is that. I've rebooted my computer, logged out and then back in, you name it I've tried it. I even googled for possible solutions, but came up empty handed. So I will continue to respond to comments, but it will be "anonymous" and then I will sign my name so you know it is me. 

And so dear readers, it feels good to reconnect with all of you. Thanks for stopping by.


dkzody said...

I'm glad your sister came to visit. Nice to have family support.

Carole said...

Yes! It meant so much to me. I saw her transition from not wanting to see a photo of him to saying she wanted to visit him. So grateful.

When someone chooses not to visit, or to not ask about him, it feels like he is already dead to them. Harsh words, but that is what it feels like.

DJan said...

I am always happy to see you show up in my mailbox. I've wondered how Jim is, how you are, and now I know you are both doing just fine. I was again reminded from your post about how young Jim was when he developed symptoms. When I think about how much better everything is for you now, I know if something similar to Jean's situation were to happen to Jim, you would make the right choice. For now, it's not an issue. And you are among many of my friends who are having problems with Blogspot and comments. I allow anonymous comments just for them. I hope they fix it!

Tom said...

Who am I to offer any kind of advice or suggestion? Yet it still seems to me that life is worth living as long as you need him, can't wait to see him and he still knows you and loves you. But ... don't drive in the snowstorm!

Mary said...

That would be a tough call. Three things come to mind. 1) What if any, discussions on these types of occurrences you had in the past and what were his wishes then. 2) the inclination to keep them alive for your needs and 3) and imagining what you would want if it was you.
Each individual, each circumstance is a choice and we all do what we think is best.

Anonymous said...

Thanks for your encouragement DJan. I hope you are right, that I would make the right decision. It’s so hard because I want to do the right thing for Jim, but I know that my thoughts are muddied by my own feelings and needs.

Glad I’m not the only one with problems with blogger comments. As you can see above, it allowed me to comment to dkzody using my sign-in, but not to you!


Anonymous said...

Thanks for your perspective Tom. It rings true to me. It helps me to hear someone’s voice other than my own.
We got about 8 inches of snow yesterday. But today the roads are clear, thanks to the plows and the sanders. 11 degrees though; time for the long down coat.


Anonymous said...

Such a thoughtful comment. And as I sit here, I don’t know what I would want if the situation were reversed. More to ponder...


Anonymous said...

Hello! Glad to hear that things are somewhat stable. Your planned birthday celebration will, I’m sure, be delightful. It’s good that you have a good support network at the facility. Especially glad to hear that he is “still in there”. All the best to you and Jim, D(javanut021–I am also having comment issues)

Anonymous said...

I’m glad the holidays are behind us. I didn’t write about it, but the celebrations and parties on the memory care unit were lovely. Always bittersweet though, as things have changed so much for us. I look forward to his birthday, a nice low key celebration.

Thanks for stopping by D.


Tehachap said...

I've been thinking of you off and on for the past week, feeling that it had been some time since we last heard from you. So VERY glad to hear that life continues on for you and Jim. Continued blessings to you both. How wonderful that he's still there with you, even though he can't always communicate in words. His spirit is still alive and present. Hugs...

Carole said...

Hi Carol. Good to hear from you too. Life seems so much more settled compared to two years ago. I sometimes look back to when Jim was still at home and wonder how we both survived that difficult time. But we did, and the sweetness of our daily visits sustains me.

Barbara said...

Have you checked Google+ Comments. then Settings, then Posts, Comments and Sharing, then near bottom of choices - Use Google+ Comments - change drop down to No. I've heard somewhere that can cause a problem.

Carole said...

Thanks Barbara. I’ll try that. As you can see from my above comments, the problem seems intermittent.

Dr Sock said...

Dying due to an untreated UTI - that seems harsh. Recently, a dear former colleague passed away due to infected pressure sores that formed as a result of nursing neglect, and that didn’t heal because he was a diabetic. It was an extremely painful death. It made me angry and sad to hear of it.

Every one of us is going to die eventually, but one hopes for a death without suffering, and that holds off as long as the person is still enjoying life.


Anonymous said...

Thanks for your thoughtful comment Jude. I’m clearer on the issues now. Being able to write about it, talk to Dr M. and hearing from my kind readers has helped to bring better clarity.


troutbirder said...

Be well. My wife Barb is now out of the "lock Up" at St. Mary
's in Rochester Minnesota after three weeks their Today was off to Memory Care. A new stage of life for both of us. Toutbirder (Ray) Still reviewing books on the old blog...:)

Anonymous said...

Oh my goodness. Thanks for the update Ray. This is always such a challenging time in the journey of dementia, both for the caregiver and for the person afflicted with this cruel disease.

I'll be thinking of you and Barb as you transition down this path, hoping you can both find your way to peace and contentment.


troutbirder said...

I’m finally back online after about a month. The war between Yahoo and Google ended. Almighty Google finally let me into my own two blogs. A miracle, as it were.
I'd like to tell you all the up and downs I've had dealing with Barb demetia Stage6 and a Valentine dance after lunch at memorycare in Rochester Cottagewood, the fight Ive fought over dumb lawyer rules at both Mayo Clinic and Memory Care. I may write a best seller on that last subject. If interested I can be emailed at