Three Years From Mild Stage Dementia to End Stage Dementia

I have updated the progression of dementia page which you can read by clicking here. 

You may remember that I bonded with Camille, the wife of one of the residents of the memory care unit. Sadly he passed away last week. Services were today. I expect that my friendship will Camille will continue. The bond we have is so strong. We both know what it means to lose your beloved husband.

Technically of course, Jim is still alive. But so much has been lost. I still hang on to the bits and pieces of him that I am able to find each and every day.

Regular readers will remember the post (February 2018) describing the disastrous result when the decision was made to discontinue his citalopram. Today, now that Jim is in the end stage of dementia, he no longer needs the citalopram. Recently it was tapered to a lower dose and then stopped completely. I hoped that perhaps he would have more wakefulness. But there has been no improvement in his somnolence.

Jim sleeps through the night. Staff awaken him for meals and he manages to stay awake for 1.5 - 2 hours, and then falls right back to sleep. Sometimes he will actually sleep through a meal; this is while he is at the table, food in front of him and someone trying to awaken him to feed him. I'm struggling with this. As you might imagine I want every moment I spend with him to be one of wakefulness.

From what I have read, the increased somnolence is typical of end stage dementia. Jim is not struggling at all. He is content, never agitated, and sometimes will smile! Intermittently he demonstrates a true connection with me. Other times there is a vacant stare....wish I knew what he was seeing/thinking.

Jim is having some early signs of dysphagia (problems swallowing). He occasionally has a delayed swallowing response when food/beverage is in his mouth. Occasionally he will cough after taking a drink or eating some food. The concern is for aspiration, where the food/drink enters the windpipe instead of the esophagus. I'm going to talk to the speech/language therapist about a swallowing evaluation. In the meantime, it's important to make sure he is wide awake when he is being fed and to make sure that his cervical spine is upright during meal time.

Jim has a new wheelchair; it provides more support for his body, especially when he is fatigued.

All of these changes, the somnolence, the dysphagia, decreased mobility are all results of further damage to the parts of the brain responsible for these functions.

Jim has always been a very conscientious about his oral care. Faithfully brushing and flossing and seeing a dentist 4 times a year was part of his routine. He has a beautiful smile that just melts my heart.

When Jim was no longer able to brush his teeth, he would let me help him. At first it was just getting him started and then he could finish the task. Now of course, I brush his teeth for him. But the amazing and wonderful thing is that he still enjoys it! He has lost the ability to consistently spit from his mouth. Sometimes he would spit, sometimes he would swallow it, and sometimes it would sit in his mouth for a very long time before he either spit or swallowed.

I use a very small and very soft toothbrush. Because of the problems with spitting, I switched to toddler toothpaste, using only a tiny bit. It's safe if it is swallowed. It still seemed confusing for him, so I now dip his toothbrush in an oral rinse specifically for mouth care. It doesn't produce a lot of liquid, so the spitting part is no longer an issue. He's very happy to let me brush his teeth with this. I then followup with a tooth sponge (dipped in the oral rinse) and go over his teeth again for good measure.

After we're done, he seems so happy! I know that sounds silly, but it must be a ritual that was important to him, and he is still able to have a nice clean mouth and a beautiful smile. Oral care is a terrible problem in a lot of long term care settings. There is often resistance to it, and sometimes it is not the top priority for overworked staff.

A couple of weeks ago, I entered his room to find two staff getting him cleaned up and ready for lunch. He was lying on his bed. Matt said playfully "Carole's here! I bet you want to see her!" As staff moved away from the bed, I stepped in and Jim reached up with both arms and pulled me tight to hug me! I couldn't believe it. He was so happy to see me!

Earlier this week when I came to see him, I sat on the edge of his bed. He opened his eyes, turned to me, caressed both sides of my face and gave me the most beautiful smile and his gorgeous brown eyes lit up. Wow. I'll never, ever, forget that moment.

So yes, I still have these very precious moments that will live on in my heart forever.

It was about three years ago that I first started blogging. At the time, Jim was in the mild stage of dementia (Fisher's Stage 4). So many changes in such a short time! I've learned so much about this dreaded disease. That knowledge has helped me to be a better care partner for Jim. It gave me patience and strength when I thought there was none to find.

This blog has been an incredible support to me, as I pour out my heart, and my kind readers respond with such thoughtfulness. I will always be grateful. Thank you.