Monday, May 20, 2019

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.

19 comments:

Barbara said...

Reading your posts has been so beneficial about what we know and do not know about dementia. As a severe diabetic, I run the risk of dementia. I would prefer to have one of the other numerous diseases that diabetes affects but you don't get to chopse. However, I do choose to inform my kids of my (non)expectations should I get to a disastrous stage. You are so very lucky to have had coverage for the care. My friend's mother was just diagnosed with Alzheimer's, does not have care insurance and already so many problems have arisen. You been a wonderful support to your husband and I admire you for everything you have gone through. I continue to hope for the most moments of reality possible. Thank you for sharing.

Anonymous said...

I may not comment every time but it saddens me each time. My mom died of it too but her decline was short and quick - she just went into stage 4 rapidly it seemed like one week to the next. She was in hospice care for less than 2, I learned that the body knows how to live, i.e. breathe, the heart pumps, etc and the body knows how to die slowly and without pain. As the Alzheimer's Association said this disease is the long goodbye. Your incredible love - in between the two of you shines through your pain. I hope the blogging lessens the pain somewhat but I truly understand your pain, frustration, anxiety and fear. God walk with you both. -N

Carole said...

Barbara, thanks for your comment. Sorry to hear about your diabetes. That too, is a stressful chronic condition that can be difficult to manage. Family support is so important; I'm glad that your kids are in the loop, and that you are keeping them informed.

The financial piece is very tricky. As you might guess, long term care is very, very expensive. We did not have long term care insurance. And medicare and private health care insurance do not cover extended care at a memory care facility. With the help of an attorney who specializes in elder law, I was able to take advantage of strategies (all perfectly legal) that helped to preserve some of our financial assets. I still pay a very large sum for his care every month, but at least it is not $144,000/year, which is the cost of private pay care.

I'm glad that you enjoy reading my blog. I like to think that it helps others who might know someone with dementia, or perhaps are on this journey with a loved one as well.

Carole said...

N - Thanks so much for your comment. I remember you from comments in the past. The pain from the loss of your mom is still there. For those that we love in this life, I don't think that the love ever goes away. One of my very kind readers described the loss of her husband as now being a "benevolent presence" in her life. I love thinking about it that way! Our loved one will always be with us, even after the physical body is gone.

I'm grateful every day for this incredibly strong bond that we have, and I know that our love will sustain me through the inevitable difficult times ahead. Thanks for your kind words N.

Jabberwalky08 said...

Thanks Carole, again, for the tender description of your life with Jim now. Most of us never see those private moments, nor learn how to be there with our spouse in these late stages of the journey - your writing helps so much.
Wishing you a peaceful heart and a calm mind these days.

Carole said...

Thanks Jabberwalky. It helps me so much to be able to put my thoughts into words. Therapeutic in a way...

And sometimes it's helpful to look back to where we were, and to realize that in spite of this dramatic decline, he is much happier and more content than he ever has been in a very, very long time. Heartbreaking for me to see the loss, but knowing that he is finally at peace as this disease ravages his brain means everything to me.

DJan said...

There are no words. I feel so privileged to having got to know both you and Jim through your posts. From the early days when he was agitated and wandered not knowing where he was, to this day when he is mostly sleeping and still being there occasionally for you, it's hard but also somehow comforting. I know he's content and not in pain, and that must feel very comforting to you. Sending you my sincere thanks for continuing this blog.

Carole said...

Thanks DJan. As I typed out my response to Jabberwalky above, it really hit me, that the most important thing is that Jim is finally at peace with this disease. It helps me immensely to be able to frame all of this with this realization. From his perspective, he is finally resting comfortably, not tortured psychologically any more by the horrifying betrayal of his brain disease.

My kind readers help me to process all of this, with their support, readership and comments. And for that I am so grateful.

Arkansas Patti said...

Jim's delight in seeing you brought tears to my eyes. He seems to keep giving you little but enormously meaningful gifts to thank you for all your care. I too am relieved for you both that he is content and not agitated. That would be almost too much to bear.

Carole said...

Oh, Patti, your response means so much to me. I just read your blog this morning and am so glad that you finally have some relief from the occipital neuralgia.

I like how you phrased it "keeps giving little, but enormously meaningful gifts". I couldn't have said it better, and it helps me to feel all that closer to him. ❤️

Cathy said...

I remember your last little trip south during winter and the trials of that trip, then how you pondered over the question of handing 'care' over to someone else - yet here you are all that time later still able to give Jim a little bit of that personal care yourself. Just that little bit must also 'help' you as well as let you remain in physical contact with the love of your life.

Carole said...

Cathy, you are so right! Still being able to provide care for him means the world to me. I just know that if the real Jim could speak to me now, he would reassure me that we are both doing the best we can under the circumstances. In his professional life he was a strong advocate for those with very great needs. I always admired him for that. I think about how important it was to Jim to always respect and provide the very best care for the most vulnerable in life. If the situation was reversed, he would be there for me. Such a bittersweet time in our life.

troutbirder said...

I think we're still in stage six. Compare to where you and Jim are now Barb light is still shining. I've had to delay my knee replacement due to the recent pseudo gout episode shot which put a two month delay on the surgery. So yesterday after a morning at Cottage went out for lunch and to see a movie called
A Dogs JOURNEY. Finding myself all alone in the theater and unable to stop crying when the names of my several of the dogs and then two grandchildren appeared in the plot.... I stuck it out to the end. A happy ending actually and when I left kept reminding myself "We're a team and we keep on truckn. Some friend had visited Barb and later I got an email which used the phrase "it will be a blessing when....: Not yet.

Carole said...

Ray, This is such a hard journey. People mean well, but it's not helpful for someone else to say "it will be a blessing when..." Just as every dementia journey is unique, our ways of coping are unique as well. Hang it there. Sending warm thoughts and blessings your way.

Jeff said...

This is hard to watch and my prayers are with you and Jim. My mother is in a stage similar to Jim and has been that way for the past five years. It is so hard to watch, even from a distance. Blessing

Carole said...

Thanks Jeff. I'm so sorry to hear about your mother. It's such a cruel disease. I think it might be even harder for you, watching from a distance. Glad you stopped by.

Kay said...

I know your blog has been helpful and supportive for a lot of people who are in similar positions. Thank you for sharing your knowledge, Carole.

Carole said...

Thanks Kay. It actually is therapeutic for me to write. And I’m always grateful to think that my blog can be of support to others too.

Kylan Gentry said...

Hello everyone on here, I want to share with you all a great testimony on how I was cured by Dr Jekawo, who cured so many diseases.
I was suffering from herpes and diabetes also my little sister was a victim of blood cancer too but with the help of Dr Jekawo we are all fine, well with his natural remedies that he prepare then send to us through dhl courier he then instruct us on how to drink the herbal medicines which we did and today we are completely well, we have being living free for 2 years now and it's seems like a God sent when I met him online by a lady giving testimony online like I'm doing right now.also I have introduce Dr Jekawo to several colleagues from works suffering from different kind of diseases and Dr Jekawo has healed all of them with his herbal knowledge. he's a great man with ancestral power to cure people with herpes,cancer,diabetes,hepatitis,hpv,lupus,als,hiv/aids, also spiritual consultation he's available for that as well.
I email him on: drjekawo@gmail.com because that's the only source to get to him as he lives far from the United state,I told him that I will be giving testimony on his behalf because he's a good man with a Godly heart.