"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.