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.

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.

Friday, April 5, 2019

Memory Care Unit; Things that Might be Helpful to Know

While most of our experiences at the memory care unit have been positive, there have been a few bumps in the road. Not totally unexpected given the challenges of providing care for 40 residents with dementia. Regular readers will remember over a year ago, when the physician lowered Jim's citalopram without consulting with me first. Jim's agitation increased dramatically, he had trouble sleeping, and lost his appetite. You can read about it here. Things stabilized once his usual dose was resumed. But I remember only too well the frustration of this experience. Worst of all, Jim suffered mightily. He was inconsolable during this period.

Fast forward to today. I learned yesterday that this occurred with another resident just recently. Her decline was even more dramatic than Jim's. Family is, of course, very upset. I was able to share with Ilene (daughter) about the GDR (Gradual Dose Reduction) policy as mandated by the federal and state government. We commiserated about our frustration and decided to do something about it.

Together, Ilene and I are developing a welcome packet for new family members that includes information about GDR and other basic, helpful information about our unit. When I look back on our first couple of weeks here, I remember feeling totally overwhelmed. I always make an effort to reach out to new family members, but perhaps putting something in writing would be helpful too.

Ilene created a form to document a GDR; it is filled out by the nurse manager and is signed by the physician, the nurse and the family member prior to the medication change. This way family members are aware right from the beginning, they know that they have a right to refuse this change, and are able  to monitor for changes if the medication is decreased.

While we are still working on the GDR form, I want to share with you the welcoming letter that I created; it covers some helpful tips for newcomers. While the specifics for memory care units are different, a lot of the basic concepts will be the same.

Welcome to the Memory Care Unit

There are many challenges facing us when the decision is made to place our family member in memory care. We hope that this information will help with the transition. 

  • Be sure to reach out to other family members for any questions that you may have. You’ll find that we are well connected and we support each other on this difficult journey of dementia. We’re a friendly group and we often feel like one big family. As you get to know the residents and family members, you’ll find that our caring spills over to all the residents on this unit.
  • Be sure to introduce yourself to the staff. Socorro is the Nurse Manager and Tifanie is the lead LPN. RN uniforms are royal blue, LPN uniforms are light blue, and CNA uniforms are navy blue. There is a daily posted schedule in the office that shows which CNA is responsible for the care of your family member. 
  • Structured activities are offered each day. The schedule for the activities is posted on the white board just as you enter the unit. The activity leaders are caring and experienced in working with folks with dementia. The activities provide an opportunity for folks to socialize with each other as well as to participate in different activities. You’ll find everything from Bingo, to Happy Hour (non-alcoholic beer and wine), to seasonal celebrations. 
  • There are plenty of beverages and snacks available at all times on the unit. Ask a staff person or a family member where to find the goodies. Kate is the dietician for our unit (maroon top). You'll often see her on the floor at lunch time.She is very happy to work with  you to make sure dietary needs and preferences are met. There are always two alternatives at each meal, and other options are available also, if needed.
  • If needed, physical, occupational and speech therapy are provided.
  • Family council meetings are held occasionally. Usually there is a mailing or a notice at the front desk giving notice when the next one will be held. These meetings are for questions and concerns specific to the unit, but not specific to an individual resident. We are encouraged to start with the nurse manager for concerns specific to one person.
  • Occasionally there are untoward events, such as falls or a change in health status. If you wish to be notified of these events when they occur, be sure to let the Nurse Manager know. 
  • You may wish to review the plan of care on a regular basis. This will provide you with information on the specifics of the care and level of assistance needed for your family member.
  • Sometimes medication changes are made. If you wish to be notified before medications are changed, be sure to let the Nurse Manager know. CMS (Centers for Medicare and Medicaid Services) regulations require attempts to gradually reduce the dose of certain medications. This includes anti-anxiety, antidepressant and antipsychotic medications. The response is monitored and documented. Family members can provide important feedback in this type of situation. 
The journey continues. I'm hoping my blog can in some small way make a difference and help others who are traveling down this road. 

Thanks for stopping by.


Thursday, March 28, 2019

Primitive Reflexes and Further Decline, But Still Connecting

It seems to be happening so fast! It's been a difficult few weeks, as I observe further decline in Jim's ability to function. Today I updated the specifics of these changes on the second page of my blog, which can be found here.

Primitive reflexes are seen in infants. Sucking reflex and startle reflex are two such examples. Developmentally, these reflexes disappear at the baby grows. In my quest to understand the changes that I've seen in Jim, I've discovered that these primitive reflexes can reappear in late stage dementia. Over the last few weeks, I've observed both of these reflexes with increasing frequency.

At meal time especially I see the sucking reflex. Anything that he can bring to his mouth seems to elicit this response. When I approach him with a spoonful of food, he often will purse his lips, trying to suck on the food that is on the spoon. He  often reaches for utensils, napkin, placement, clothing protector, seemingly anything but food, and will exhibit this reflex. It has resulted in some challenges to help him actually ingest food. His weight is stable, and he drinks plenty of fluids (via straw), so no worries at this point about adequate intake.

Yesterday there was a close call at bingo. As I've mentioned before, Jim is a passive participant at structured activities. He seems to enjoy being present, but is not able to actually participate. Yesterday he picked up a bingo chip, brought it up to his mouth, made a sucking noise and it went into his mouth! I was able to safely extricate the chip without much difficulty, but it was alarming to me. If he had actually tried to swallow it he would have choked for sure.

I've notified the appropriate staff, including therapists, about my concerns. Putting into place the appropriate safeguards within a very busy memory care unit will be challenging for sure.

Jim startles very easily. In spite of my soft voice and slow movements, the slightest unexpected movement or sound causes him to be startled. His body jerks back, his arms go up and there is an involuntary movement in his legs. I'm doing my best to keep things even keeled for him, but sometimes it seems unavoidable.

I've read that as the dementia progresses there is a loss of peripheral vision and eventually a loss of distance vision beyond a couple of feet. Jim seems to have lost the peripheral vision. Not sure about the distance. But I'm grateful for my own awareness so that I can adjust what I do in supporting him with this change in vision.

Physical therapy continues, but I have to say it seems pretty discouraging. I'm not seeing improvement as I had hoped. If anything, he seems more unsteady when standing.

Awareness of his surroundings seems to be diminishing further. It's harder to break through and find him. The vacant look is increasingly present. But he's still in there, and I can still find him.

Yesterday we were sitting in his room, he in his wheelchair and me on his bed. On a whim, I lifted one of my legs and rested it on both of his legs. He immediately started rubbing and massaging my leg! Wow! It was an incredible way to connect with him. I took my shoe off and he started massaging my foot! An amazing physical and emotional connection that made us both very happy.

Years ago we used to give each other back and leg massages, especially following a difficult hike or bike ride. Somehow his brain was able to fire on all of its cylinders at that moment yesterday  and create an experience for us that I will never forget.

Still able to connect, to find him.

Thanks for stopping by. I so appreciate the support of all my kind readers.

Saturday, March 9, 2019

Where Do I Begin....

It's been quite a while since I last posted. It's been a difficult time, as I witness the further progression of Jim's dementia. If you are interested in reading the specifics of his progression, I recently updated the second page of my blog at this link.

His mobility has declined quite a bit. He now needs a wheelchair most of the time. Occasionally he is able to use a walker for short distances, but someone must be near him to make sure he doesn't fall. Physical reasons have been ruled out as an explanation for this decline. Thyroid functioning is OK, blood pressure is fine, there is no infection, and he is not on any medication that could contribute to this decline. The consensus from the professionals is that the decline in his mobility  is a progression of his dementia.

He is receiving physical therapy to optimize the strength in his legs. For as long as possible, the goal is to maintain his ability to stand. This helps the staff providing care for him, for things such as changing his brief, dressing him, showering him and transferring him from chair to bed. I actually go to the PT sessions with him. What we have discovered is that he responds well to me when directions are given 😊. For example, when the PT tells him to do something (stand up or sit down for example), Jim stares into space as if not hearing or making a connection. The minute he hears my voice, he turns to me and smiles and then proceeds to do the best he can to follow the direction. Wow! How sweet is that!!!

So in the middle of all this sorrow, I still have my bright spots! I'm so thankful that I can still "find" him. He's still in there and I still know how to reach him. But I must temper my bragging with the reality that there are times when even my voice does not always get a response.

Sometimes you can tell that he is trying to do something, but his body is not cooperating. The brain is connected to every single thing that our body does. So activity such as walking will only happen if the brain is firing on all cylinders, making that connection to get the nerves and muscles to do what they are supposed to do.

The last few weeks he has needed a lot of help with eating and drinking. It used to be that I simply had to cut up his food for him and encourage him to eat/drink. Now, if left alone, he may not eat or drink at all. I've also seen him pick up an empty spoon and put it in his mouth. At times he would try to use the handle of a fork trying to suck on it (thinking it was a straw?).  Occasionally he will try to eat non-edible items, such as styrofoam plate, clothing protector, napkin.

His weight is stable, so I know that he is getting enough to eat, even when I am not there. I'm always there for lunch and I stay the afternoon. This gives me the opportunity to make sure he gets enough food and fluids. Dehydration is very important to avoid. It can lead to constipation, low blood pressure, and with Jim's history of kidney stones he needs to stay well hydrated to avoid any reoccurrence.

Jim is almost mute. On rare occasion there may be a word or two. But his sweet smile and beautiful brown eyes light up when he sees me. At least most of the time. There are times when he seems to be looking right through me. It's heartbreaking. But so far, that happens with me only once in a while. He still hugs me, kisses me and caresses me. Every day that he is still able to respond this way, I am truly grateful.

His decline over the last few months has been very hard for me. My saving grace is that Jim is content. I think back to when he was in the middle stages of dementia where he had a dramatic change in his personality and behavior.  He was so very angry, upset, inconsolable, and I was afraid for his safety as well as mine. But now that he has declined further into the later stage of dementia, his old personality is back! The Jim I married was a guy who was quiet, soft spoken, kind and loving. And he is back.

I know that the day will come when he is no longer able to respond when he sees me. Dr. M. reminds me that he will still be in there, and that I will find other ways to connect with him. This has been a very difficult journey for both of us. Our love for each other sustains both of us. And I'm honored to be with him and see him through this next stage of his life.


You'll notice that comments pop up on a separate page. I think this will resolve the issue and allow me to respond to comments from readers. Thanks for stopping by. I so appreciate each of you sharing this journey with me.

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.

Friday, November 9, 2018

A lot has happened over the last year....

It's hard to believe it's been just over a year since Jim was transitioned to the memory care unit. When I look back at my blog posts from that time period, it brings back a flood of memories; most of them quite unsettling. The period leading up to the transition was so very difficult for both of us.

But that is history, as they say. Today Jim is settled into the memory care unit. He is content and well-cared for.

His weight is fairly stable, which means he is eating well. He doesn't have the initiative to drink beverages. I'm there at lunch time, and when handed the glass he will willingly drink. I make sure he gets plenty of fluids at lunch and then throughout the afternoon. He needs some help with cutting up food and using cutlery. The food for the most part is very good! Today it was a mini pepperoni pizza, boneless chicken wings with blue cheese dressing, green beans and pears for dessert.

Jim's mobility continues to be variable. I would say that his baseline is a very slow walk with his walker. Sometimes he has problems with stability: his legs and feet start to shake, his arms move forward with the walker, but his feet and legs just won't move. There is a wheelchair that is kept in his room as a backup for times like these.

There is a new resident on the unit and I've made a wonderful connection with his wife, who is about my age. It's wonderful to have a network of support; this is a journey that no one should have to walk alone.

My typical day with Jim goes something like this:

12:30 Arrive in time for lunch. It's the "guy's table". Interestingly, the guys are all pretty quiet. Family members at this table always joke about how we are the loud ones. It's a nice time to socialize together. The networking with other family members is such that if one of us can't be there, we know that the others will help out and/or keep an eye on things. Phone numbers have been exchanged, and quick texts to each other help to reassure and update each other on what's going on. So grateful for this!

1:15 This is a relaxing and enjoyable time for the two of us. Jim is happy to let me help him shave, brush teeth, shower if needed.  We've got a very pleasant routine so that it is a very special time for the two of us.

The rest of the afternoon is some strolling around the unit, mixed with organized afternoon activities such as balloon toss, dice games, bingo, sing-a-long, happy hour, ice cream social etc.

I also have a tablet (with internet connection provided by the nursing home) that I bring with me. Jim and I share a love of music, especially classical. Youtube has all kinds of musical performances that you can watch. The response from Jim is just amazing. I think that music must connect to a different part of the brain. He so enjoys this. And I am so gratified to see him fully engaged by the music and the performances. It something that we can share together in the privacy of his room. Such a special time!

I've written before how his speech is minimal. And sometimes it almost seems like he is in a daze. When I first greet him, I never know how he will respond. He might look at me, but as I speak to him it is almost as if he is looking through me and doesn't hear me or know that I am there. I know it's  part of the disease, but still it is so sad.

Some  days he'll smile when he sees me; his eyes light up and I can tell he is happy to see me, even if the words are not spoken.

And every once in a while he will speak several words, usually as a visceral reaction. The other day I walked into his room and sat on his bed next to him. When he first saw me he said "Oh Carole......I love you.....with all my heart". I will remember this forever. I will never forget his voice or the way he looked at me when he said these precious words.

One mystery for me is that no one from my family has ever been to visit Jim since he was placed. Why is that? I think I know.....I try to put myself in their shoes, and I imagine there are a lot of different reasons: fear, feeling uncomfortable, what do you say to someone with dementia, etc. But it really hurts me and leaves me feeling sad.

A lot has changed over the last year. I'm grateful to have Jim content and settled in memory care, but at the same time I grieve each loss that I see. Sometimes I think about what our life would be like if this had never happened to Jim. What would our retirement life look like?

But being the realist that I am, I quickly refocus on the present and what our new reality is. And I accept it. And I remain grateful for the love that we share and the kindness of others during this journey.

And that includes gratitude for all my very kind readers. Thank you for your support on this journey; it means so much to me.


I'm having problems commenting on my own blog! I'm still working on finding the solution. I can comment, but it will be as "Anonymous", and then I'll sign my name at the end of my comment. If anyone knows of a fix for this, I'd appreciate the help.