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. 

Friday, September 14, 2018

Dementia's Bittersweet Transition

These images are incredibly powerful. I look at them, and my heart fills with emotion. Corrina was kind enough to take both of these photos. I now have them displayed in a lovely frame on my piano. The photos elicit warm, loving memories of our life together. I will cherish them forever.

It's been a while since I have posted, and I actually have quite a bit to share with my kind readers. I've been waiting until things settled into place a bit.

Since I last wrote, Jim has fallen three times. No serious injuries, however he did sustain a laceration on the back of his head with his second fall, and scrapes on his forehead/nose on his third fall. His gait is  slow, shuffling and a bit unsteady. When he becomes fatigued, he seems unable to lift his feet properly, resulting in falls/near falls from his forefoot catching. The doctor has evaluated him to rule out any medical reasons for falls/instability.

As part of the evaluation, first his Depakote (used for agitation) and then his Geodon (used for hallucinations/delusions/agitation) were discontinued (not at the same time; about 3 weeks apart). I have to admit that I was a bit nervous about this. Interestingly, stopping the 2 medications did not help his gait/steadiness. So the loss of his ability to ambulate without assistance is thought to be a progression of the dementia.

So what happened with Jim's moods when these two meds were discontinued? Interestingly, agitation did not return. He does not appear to be hallucinating. If he is hallucinating, it does not seem to bother or upset him. His moods have been quite mellow.

A year ago when Jim was first prescribed Geodon he was still living at home. His hallucinations and delusions were frightening to him, causing severe agitation and threatening behavior. The Geodon helped quite a bit at the time.

A year ago I believe that Jim knew that something was terribly wrong and it scared him. Hence the agitation and aggression. Fast forward to today and it appears that Jim has very little awareness of his situation.

With dementia, developmentally the person is going in reverse. I see the rapid decline, sometimes even week to week, and it is just heartbreaking. With the tragic reality of his progression, I work hard at appreciating the fact that he is more content now than he has been in a very long time.

He no longer has what is called "resistance to caregiving". For example if he needs to be changed due to incontinence, he is no longer combative or resists. He passively accepts the help. It really seems as if  he no longer has an awareness that "something is wrong".

So you can understand if I say that this is a bittersweet transition to observe. There is the tragedy of the progression of the dementia, but the joy of knowing that he no longer seems to be aware of or suffer from fear of the terrible changes that are happening to him.

He has been receiving Physical Therapy for optimizing his strength to minimize his risk of falling. It's a challenge to make sure that he uses the walker. He does not resist using it at all, but he does not remember that he is supposed to use the walker. If someone puts it in front of him when he stands up, he is more than happy to use it.

I've updated his progression of dementia on the second page of my blog. With the recent changes that I've noted, it appears he is transitioning into stage 7c, as described in Fisher's Stages of Dementia.

Jim needs some help at meal time. Technically he can still feed himself. But the beverages poured for him will be untouched unless you pick it up and hand it to him. Use of utensils is difficult for him; may use a knife for the soup or try to "drink" his cup of pudding. I make sure I'm there for one of the meals every day; usually lunch. This way I can make the dining experience is easier for him and make sure he gets plenty of fluids. The rest of the afternoon is sprinkled with more beverages and some snacks, so he is well fed and well hydrated. At meal time, staff are busy feeding people who have no ability at all to feed themselves. They are understandably very busy, doing the very best they can.

The other change that I've noticed over the last few weeks is the "muting" of his response to me. Before I could count on the fact that as soon as he saw me, he'd have a big smile, his eyes would light up, and he would walk over to give me a hug and a kiss. Now, his response is more muted and not as predictable.

Even though there is sadness in the losses that I see, I still find joy each day in other ways when we spend our time together. We still enjoy taking a shower "together". He seems to truly enjoy the warmth of the shower. He stands, using the walker to support him and I take care of the rest. He loves it and so do I! Such a warm, loving and personal experience that we can share.

He is no longer able to brush his teeth, but he is happy to let me do this for him. I've finessed my skills, being careful to angle the brush just right so that it is a comfortable experience for him. He seems to enjoy letting me shave his face, as I joke about having to get out the hedge trimmer to get all the whiskers.

He still reaches to hold my hand, or to put his hand on my leg. He sits close to me, seemingly enjoying my closeness.

So with all the sorrow, there is still happiness! I choose to focus more on what Jim and I still have, as opposed to dwelling on the losses. I'm getting wonderful support from Dr. M., who is able to help me process some of the more difficult emotions. She knows me so well and is able to help me gain a different perspective/understanding with difficult situations. I'm so grateful to have her in my life.

On a closing bittersweet note, my dear friend Corrina is moving on to a very exciting turning point in her life. Corrina first welcomed Jim and I when we first arrived at the care home. I'll never forget her kindness. Her sweet personality and her love and affection for the residents shines through. As an activities leader, she provided wonderful, fun and meaningful activities for the residents. She is getting married this weekend and moving on to a job that will be a better fit for her new life with her husband-to-be. So very, very happy for her, but will miss her terribly!

Thanks for stopping by. As always, it does my heart good to be able to write about what Jim and I are experiencing.

Wednesday, August 8, 2018

Looking Through the Cloud of Dementia to Find My Sweetheart

I haven't talked about the financial aspect of Jim's care in quite a while. Regular readers might remember that with the help of an Elder Law firm I was able to legally preserve some of my assets. I believe the government allows this so that spouses are not left impoverished. It took many months for a final decision from the government, but I received word recently that the application was approved. It still is expensive; my responsibility is $45,000/year. Medicaid picks up the balance. Private pay would have been $144,000/year. This amount would whittle down any retirement savings pretty quickly.

As I've mentioned before, Jim is incontinent. But as with other skills robbed by dementia, it usually is not an all or nothing; quite often it is intermittent with varying degrees of loss. He is completely incontinent of bowel. When he urinates, sometimes it is in his pull-up, sometimes in a wastebasket or sink, and recently it has been on his bed, his floor, on the door, in another person's room, closet etc. He knows that he has to go, but he has lost the ability to figure out where to relieve himself.

If I happen to be near him and sense what is about to happen, I can quickly grab a urinal, hold it for him and he willingly uses it. But obviously this covers only the portion of the day that I am there. His favorite New Balance sneakers were taking a beating. They were getting wet in the process, and I just couldn't keep up with keeping him in clean, dry sneakers.

Amazon to the rescue! I found these water shoes and ordered a pair. They're intended to be worn on the beach and/or in the water. They are light weight and easy to keep clean. I now have two pair. When one pair gets soiled, I hose it down in the shower; they dry pretty quickly. Problem solved!

I struggle with loneliness at times. Usually it occurs in the evening when I am home alone. I miss him so much. I miss the old Jim. The Jim of many years ago. The guy who made me laugh every day. The guy I could count on to know when I needed a little extra TLC or support. The thoughtful guy who turned every birthday and anniversary into a special celebration. Spoiled me rotten with thoughtful gifts, travels to new adventures, and snuggled close with an affection that left me knowing how lucky I was to have him in my life.

When life gave us one of those "little surprises" that we didn't count on, we could lean into each other for support, knowing that we would always be there for each other. God I miss him!

Dr. M. reminds me that it's OK to have and express these feelings. I can be hard on myself, thinking that I should be stronger and not give in to these feelings. But she reminds me that the feelings are real, and that it's OK, and I have a safe haven with her to express these feelings and work my way through. So that is what I do. I'm so grateful to have her in my life. As she says I "don't have to go through this journey alone". That is so comforting.

I also try hard to focus on the fact that I still have Jim. And I look hard every day to still find in him the essence of who he is. And indeed, it is still there.

This morning when I arrived, he was in his room, sitting on the edge of his bed, pretty much in a daze. He didn't have much of a response at all when I saw him. I discovered that he had not eaten breakfast (not willing to come to the table). I quickly found some fresh fruit, donuts, and lots of apple juice (they keep a great supply of beverages and snacks that are always available). He ate, and then drank a lot. I've noticed that he needs some encouragement to drink. He's obviously thirsty, because when I hand him the glass he chugs it right down. But yet he is losing the wherewithal to reach for the glass of beverage without a reminder. He drank 32 ounces of apple juice!

After, I helped him shower, shave, clean clothes and teeth brushed. He seemed to come around and was more responsive to my interactions.

I look for his beautiful brown eyes lighting up with recognition. I look for that beautiful smile he has when he looks at me. And I wait for that tender touch when he reaches for my hand or when he kisses me. That's when it all feels right again.

I've written before how he has very little speech. But yet there is still some comprehension. Hard to say how much, but he understands best if there are fewer distractions and not too much information at once.

Last weekend we were sitting in the open courtyard on a beautiful summer's morning. (The memory care unit is built around the courtyard.) We were pretty much by ourselves, so it was pretty quiet. I started talking about some memories of things we had done in the past. It was heartwarming to see his face light up with recognition when I talked about something he clearly remembered.

Jim has always had a fascination with airplanes. He actually took flying lessons when he was quite young, before we knew each other. We used to enjoy going to air shows together. I brought up the "Blue Devils" US military jet pilots. He immediately corrected me and said quietly "Blue Angels". Wow. Kind of blew me away.

Lisa, my hairdresser, has been coming every 4 weeks to cut Jim's hair. She gives him the best haircut ever, and he just loves her. When she came last week, as soon as Jim saw her his eyes lit up and he had the sweetest smile for her. Hugs were exchanged, and I thought about how lucky I am that Jim has all these caring, loving people in his life.

He has the same kind of reaction for Corrina, one of the activity leaders for the memory care unit. They adore each other. The unit is blessed with good hearted souls, willing to give of themselves for the most vulnerable among us. So very, very grateful.

Corrina brought in her dog the other day. Jim has always loved dogs! I have the sweetest picture of Jim and Corrina's dog snuggling close. So sweet! Once again, to see that spark in his eye, his whole body responding as he was bonding with man's best friend.

I recently read some of my older posts, back when things were so difficult for me and Jim. I'm reminded that the support I received from all of you really helped to see me through some very difficult times. I appreciate each one of you ❤️. Thanks for stopping by.

Saturday, July 7, 2018

Every day I can't wait to see his expression....

and I'm never disappointed.

One of the most shocking changes to Jim has been his dramatic loss lost of speech over a relatively short period of time. He still has an occasional word or two, and if there is a particularly charged moment, there may be several words. But for the most part he is very, very quiet.

Eight months ago I can remember his conversation with the police officer, angrily telling him that I had to go, that I did not belong in our home. Speaking clearly in full sentences. Communicating so clearly. Wow. So much has transpired since that time.

Fast forward to today. Jim is settled in his care home, surrounded with staff who love him and watch out for him when I cannot be there.

The best part of my day is when I arrive on the unit, go in search of him, and then watch for his expression when he first sees me. His face lights up, he smiles, and his eyes say it all. He holds out his arms to me and then when we meet we hug, and then we kiss, and all is well as I feel the tender touch of his arms around me.

Staff seem to delight in watching. I see them pause in what they are doing, turning their eyes toward Jim. Like me, they seem to be just waiting to see his face light up in recognition when I enter the unit.

Oh, how lucky I am. But at the same time it is bitter sweet as I know it won't last forever. That day will come when he may not know me or recognize me, or be able to respond in the way he does now. I don't know if I'll ever be ready for that day.

But I don't focus on those thoughts. Instead I treasure and memorize his smile, his eyes, his gentle touch as he sees me and holds me. I will carry that with me forever.

The nursing home organized an antique car show. It was held outside on the grounds, which are absolutely beautiful this time of year. I was a little nervous about Jim going. How would he react being outside his safe haven? Would he see the cars and want to drive one? Would it be too confusing or upsetting for him? My greatest concern was that somehow he would react in a way that would result in an upset for him.

But, at the same time I did not want to deprive him of a chance to see all these cars. He always was a car nut, and subscribed to a couple of car magazines. So, with Corrina on one of his arms and me on the other, we toured the grounds, stopping to look at each of these beautiful cars. At one point he pointed to a car and said "Studebaker!". I was shocked. Where did that come from? Then we passed a Chevelle and he said "I had one of those." And he did! Wow, just wow.

The other day when he was walking behind one of the speech therapists (who happens to be young and beautiful) he pointed to her and said "Smokin!" 😊

My observation is that when there is something or someone that elicits a very visceral response, this is when he is most likely to be able to produce some speech. I don't fully understand how this all works in the brain. As my friend Amy said "It's amazing how it's all in there, but just kinda stuck."

I'm feeling settled in my new place. Pictures and art work are actually hung on the walls. It really feels like home sweet home to me. Jim is here with me if not physically, certainly in spirit. So many things to help me still feel still so connected to him; the treasured photos, the pieces of art work we chose together, the furniture we picked out a few years ago, and of course the piano!

The story behind the piano is pretty darn sweet. I played quite well all the way through high school. Jim and I have always been big fans of classical music, and this is what I was trained to play. 30 years ago, about a week before Christmas he took a day off from work and unknown to me had a piano delivered to our house! He put it in the den, closed the door and put up a sign that said "Do Not Enter! Wrapping in Progress!" On Christmas morning we opened the door to the den, and there it was. A beautiful piano with a big red bow wrapped around it. In the piano bench I found my classical music I had trained on in high school.

I'll never forget that wonderful memory. It's a reflection of his sweet, loving heart. Dementia has been  responsible for some really rough times over the last few years. But as time passes, the sweetness of his spirit in the present far outweigh the difficulty we had in the past. And for that I am so grateful.

Friday, May 18, 2018

Contentment Found in the World of Dementia

This photo was taken by Corrina, one of the activity leaders at the care home. Below the photo she included a beautiful narrative that described how his hands provided care for others throughout his career, lovingly held hands with his sweetheart, provided comfort and companionship to his beloved black lab, and enjoyed taking the wheel of his favorite sports car.

It's hard for me to explain how powerful this is. I cried when I saw the photo and read the narrative. Corrina had captured the essence of my sweetheart. I will cherish this forever.

It's been quite a while since I posted and a lot has happened. Hard to know where to begin....

When I think back to all of the changes over the last 7 months, it makes my head spin. Last October was the crisis the resulted in Jim being hospitalized and then transitioned to a care home. Following that, I quickly realized that I needed to move. The home we built for retirement was no longer where I belonged. Every where I looked, it was a sad reminder of what we had lost. And I don't in any way mean material possessions, I simply mean the shared retired life that we had so looked forward to together.

The size of our home, the maintenance, upkeep, and expense were just too much for me. Fortunately our house sold relatively quickly. The hardest part was going through everything and deciding what to keep, sell, donate or throw out. It was a challenge because I knew that no one could really help me with that process; it was something that needed to be decided upon by me alone.

In the middle of the transition of moving, I managed to get sick. I fought it as best as I could, but I ended up a couple of days flat in bed, just too sick to move. I think the stress of it all was catching up to me.

The condo I purchased is just the right size for me alone. About 1000 square feet. I'm starting to feel settled. The last of the boxes were unpacked this past week. The community is a friendly and caring one. At the same time, it never feels intrusive. There are weekly social hours, occasional pot luck meals in the community room, and occasional spontaneous events/activities.

Jim continues to do well in the care home. Technically of course, it is a nursing home. But the love and care that I see there day after day inspires me to refer to it as a care home. It's not perfect of course, but overall the staff are simply amazing. So kind and caring, and I know that he is in good hands when I am not there.

I learned the other day that during the late evening shift, when many people are already in bed, Jim is doing his laps around the unit. When he tires, he simply goes into the first bedroom that he sees. He becomes agitated when he finds that someone is in bed. He likely is thinking that the person is in his bed, and has given a few folks quite a fright with his threatening behavior.

Depakote has been added to help with the agitation that he is experiencing at night. In addition, I'm reassured that staff are attempting to be proactive and doing their best to prevent and redirect.

Jim's language is fairly limited. Usually just a word or two that is intelligible. Once in a while he may string together a few words that are sensical, and that is always a pleasant surprise.

Yesterday a family member told me privately that Jim walked into her mother's room. He walked up to the resident (she is in a wheelchair), patted her shoulder, and said "you'll be OK". That's my sweetheart! The family member was so touched by his kindness. And I was so grateful that she shared that with me!

I haven't felt this settled in a long time. I think back to a little over a year ago when I was so stressed, I remember worrying that I was likely doing physical harm to my body. To live each day with high stress, fear and anxiety.....I'm not quite sure how I managed. Except to say that somehow in the middle of a crisis in our lives, we simply put one foot in front of the other. Because what else can we do? So we just do it.

But that is all behind me now. I'm happy and content because Jim is doing just fine. Certainly his disease is progressing, but he is in a safe haven. A place where he believes is home! And I still get to see him every day. He still knows me, is happy to see me, puts his arms around me and still says "I love you Carole".

It doesn't get much better than that.

Thank you dear readers for stopping by. And thanks for your patience for my lengthy absence. This journey has been a difficult one, but each one of you have helped to make the journey a little bit easier. And for that I am grateful.

Wednesday, March 14, 2018

Brain Failure

We've all heard the medical terms heart failure and respiratory failure. And it is crystal clear exactly what these terms mean.  I read a blog post the other day that offered a different term for dementia: brain failure.

Elaine Eshbaugh, PhD is a university professor of Gerontology and Family Studies at University of Northern Iowa. She is smart, spunky and funny. Best of all, she is the author of an outstanding blog called Welcome to Dementia Land. She offers insight, knowledge and an insider's look at the world of dementia, sprinkled with a touch of humor. This is her post on the concept of referring to dementia as brain failure.

She makes the point that for the uninformed, dementia is thought of as a problem with forgetfulness. Of course readers of my blog know that problems with memory barely scratch the surface of what dementia is all about. She suggests that for a fuller appreciation of the debilitating nature of the disease, that we should call it what it really is, brain failure.


It's been a while since I have posted, and a  lot has transpired. I received a purchase offer on our house. After a bit of negotiation we settled on a fair price. I am purchasing a condo in a village not far from where I live now. The condo is small; about 1000 square feet. Just right for one person! The building is on the bank of a very active creek; it runs every day of the year. There is a small balcony off the living area overlooking the creek. Just beautiful!

Closing on both places will be in about 6 weeks or so. Lots to do before then! This is a major downsize for me, but I welcome the opportunity to live in a smaller space with less possessions. The Home Owner's Association monthly fee covers landscaping, yard care, snow removal, etc. There is an underground garage for parking with an elevator to the building's 3 floors.

The "walkability" of the village is very good. Grocery store, post office, library, all within an easy walk. There is a beautiful park in the village with lots of trails for walking. In addition, there is Baltimore Woods which offers acres of wooded hiking trails.

It will be good to be out from under the major expense and responsibility that come with owning our current home. If Jim were able to understand and speak to me of all of this, I know that he would be happy for me, and that he would reassure me that I am doing the right thing.

After last month's fiasco of the change in his medication dose, he has stabilized back to his baseline. I spoke to the Director of Nursing and informed her that I did not want Jim's medications changed. She was very sympathetic to what I said, but insisted that it is out of her hands; the government regulations require them to do this. She agreed that Jim needed to recover his stability, and that nothing would be changed "for a while". She also said that she would call me first, before any changes were made. I'm struggling with this. Someone suggested that I threaten to take him out of there. But I would never make that threat because I would never do that to him!

Jim's speech continues to be very minimal. One or two words. But his beautiful brown eyes speak volumes to me. As I see his face and his eyes light up when he holds me and kisses me, I know that I am a very fortunate woman. I have the love and devotion of my sweetheart. Doesn't get any better than that.

I'll leave you with a picture of the view from the living area of the condo I am purchasing.

Thanks for stopping by; I so appreciate each one of you.

Thursday, February 15, 2018

Instability Unexplained....

But eventually I understood. My eyes are filled with tears as I write this. As I have written before, Jim is receiving the very best of care from the wonderful staff at the care home. However, over the last couple of weeks I have noticed a significant change in Jim, and I struggled to understand. I absolutely understand that dementia results in a decrease of function, however what I was witnessing I had a hard time understanding.

Jim became more anxious, pacing quite a bit, and his sleep was disturbed. His anxiety was so high that he was unable to sit at the table for a meal for more that a few minutes. He paced a lot; and while walking is good, his pacing around the unit was clearly unsettling for him.

Jim is still ambulatory, for which I am grateful. His gait is quite slow, but he is able to walk around the unit without any assistance. Two days ago, when he was in a highly agitated state he took a walker (unoccupied) and started using it to walk around the unit. It wasn't because he needed it, but seemed like more like a compulsion to him. He walked for about an hour using the walker, then finally set it aside to continue his usual walk.

It was a very difficult day for Jim. When he saw me arrive on the unit he was happy to see me. But that lasted all of 10 seconds. He then started to rant. With his very limited ability to speak words, he still managed to say "What the f*@# am I doing here?". It is the most words I have heard him string together in a long time. He was clearly upset. Upset at me, upset at anyone he saw. What was happening?????

It turns out that the federal government, in its infinite wisdom, has regulations for nursing homes that require periodic GDR, or Gradual Dose Reduction of medications in certain classifications. This is the link to these regulations. The regulations include SSRI's and antipsychotics. Jim has done so well at the care home that staff were hesitant to attempt a GDR with Jim. But they had to.  If regulations are not met, the federal government imposes sanctions. 

So, with trepidation they decreased his citalopram by half on 2/1/18. I did not know they were doing this. In retrospect, I have mixed feelings about the fact that they did not tell me about this until after the fact. It obviously did not color my view of what was happening to Jim with the GDR. 

Jim was placed on the citalopram almost a year ago (when he was still at home) for anxiety. It is typically used to treat depression as well as anxiety. Jim had a good response to it. I spoke to the Director of Nursing last night. She said that they are now able to clinically document Jim's setback with the reduced dose. They have restarted his usual dose as of last night. It will take at least a week or two to get him back to his baseline. 

Unfortunately, they will need to attempt a GDR with his Geodon as well. Regular readers will remember that Jim was placed on the Geodon, an anti-psychotic, while he was at home. It helped with his hallucinations and delusions. But like the citalopram, the Geodon will need a trial dose reduction at some point to see how he does. I think I know the answer to that one...

Before they attempt the Geodon reduction, they will give him some time to stabilize on his citalopram. I know that the only reason I was able to keep Jim at home for as long as I did was because of the help that the citalopram and Geodon provided to Jim. Without it, he would have been placed much sooner. 

The hardest part for me is to think about Jim suffering all because of federal regulations. I totally understand that the government wants to avoid "chemical restraints" as a substitute for non-chemical measures. And I totally get that there are some situations where it is just easier to give a pill, instead of addressing the underlying reason for someone's distress. A good example would be boredom. We know that by providing meaningful activities for folks with dementia it goes a long ways towards preventing negative behaviors. The care home does an outstanding job of this, with regular activities scheduled throughout the day, for those who wish to participate. 

The citalopram and Geodon allow Jim to be able to participate in these activities. The last week or so he has not been willing to participate in activities. As I was not aware of the dose reduction, I had a hard time figuring out why. Now I know. 

Jim never asked for any of this. This dreadful dementia has robbed him of a normal retirement with his sweetheart. I am his protector, his advocate. It tears me apart to think of what he has gone through the last couple of weeks, all because of federal regulations. In some ways I'm kind of glad that I didn't know about the dose reduction ahead of time. It would have tortured me the whole time, knowing that  a purposeful action had the potential to impose suffering for Jim, causing increased anxiety and agitation. 


On a totally different note, my elderly mom was hospitalized for pneumonia. She is now back in her home recovering, but requires a lot of support as she slowly gains back her strength. I've been a little stressed doing double caregiving. I have several siblings who can help with my mom, but only one who is retired. It's been a juggling act, taking care of Jim, my mom, and still trying to do some self-care so that I don't fall apart. 

Speaking of that, my weekly appointments with Dr. M. continue. She is my strongest advocate! It is amazingly therapeutic to be able to speak so freely within a "safe place". It helps me to sort things out, to process what is going on in my life. I can tell that I am more stressed than usual. I feel it physically in my body. So grateful to have her in my life, helping me to navigate this next chapter of my life. 

Thank you dear readers for stopping by and listening. It does my heart good to be able to write about what is in my heart and on my mind. 

Friday, February 2, 2018

Dementia Update

It's cold and snowy today. I'm scheduled to meet with Dr. M. this morning, but I will need to postpone it until next week. It's nerve-wracking to drive when the roads are this bad. The plows and sanders are out, but with the rate of snowfall (which is scheduled to continue until tomorrow morning) and the very cold temperatures, the driving will be hazardous. Especially on the hilly terrain that is part of my route.

I recently updated Jim's progression of his dementia, which you can view here. The care home continues to be very responsive to Jim's needs. They have agreed to supply the gray pull-ups for him to wear. This white ones were never acceptable to Jim, and it was a source of anxiety and anger when it came time for him to change.

Jim's gait seems slower to me. When we walk the halls, he frequently will rest his hand on the railing along the side of the wall for a little extra support. There are a few new residents whom we are getting to know. Yesterday the manger of the unit put a stop sign on Jim's door. Apparently there is one resident who likes to open Jim's door when he is sleeping and proceeds to poke him, trying to wake him up. Manager is hoping the stop sign will deter this resident. I so appreciate their attention to detail, looking for solutions to prevent potential problems.

Since writing my last post, I've thought a lot about the difficulty Jim's brother has with communicating with Jim. As I read what I wrote, it now seems harsh to me. I appreciate the thoughtful responses to the post that helped me to be more sensitive to how difficult it can be for many people to interact with someone with dementia.

As mentioned before, our house is on the market. There have been a couple of showings, but no purchase offers yet. It's a rough time of year for moving real estate, but things always pick up in the spring.

As I wrote this morning in an email to my friend Jabberwalky "It's funny, but I'm definitely disengaging with our house. I kind of feel like I'm just a "holder" until someone else moves in. It's hard to be here, as everywhere I look, there are so many memories and reminders of what I no longer have - a home with my life partner."  

Sad as it is, I think it is a healthy response and helps me to move on with my life as I need to, given the current reality of our situation.

I have a friend who lives in New Hampshire. She and I have been friends for many years and actually worked for the same agency in the 1970's. After she retired, she and her husband moved to NH. But we always kept in touch over the years at Christmas time with cards and notes. Last Christmas I shared with her about Jim's dementia. Imagine my surprise when I received some specialty fudge from Provincetown in the mail! She was reminiscing about a trip to Cape Cod we took together many, many years ago. Such a thoughtful way to reach out to me to let me know she cares.

Fellow blog writer Alice wrote a great post yesterday. The dementia journey is different for each of us, but the bond we share as caregivers is so important; it helps to know that we are not alone.

Thanks for stopping by. I so appreciate each one of you!

Sunday, January 21, 2018

I Reached for Him and He Was't There

Not every morning, but some mornings it happens. I roll over, barely awake, fully expecting that he will be there. But he's not. My brain quickly makes the adjustment...It's incredibly sad. But I don't dwell on it. I get up, out of bed and start my day.

Jim's birthday was Saturday; he is 69. I had a small gathering to celebrate: our good friends Mike and Sally (Mike has been a lifesaver throughout this whole dementia journey) and his brother Bill. We used the fireplace room, which is a quiet, small room with table and chairs. The door can be closed for privacy. We had the Ultimate Chocolate Cake from Wegmans, ice cream, balloons and presents.

It was interesting to watch Jim open his presents. It almost reminded me of a very small child at Christmas, who is more interested in the paper, the box and the bag. Jim barely looked at the gifts, but enjoyed handling and folding the paper and the bag. We captured some nice photos of Jim and me in front of the fireplace.

Jim's brother lives about 3 hours away. He periodically will come in to see his brother. Bill has always had a controlling personality, albeit in a quiet and polite manner. Before he became ill, Jim could always hold his own with his brother, setting him straight and refusing to allow this personality defect to interfere with our lives.

Since Jim became ill, Bill has been unable to alter his approach with his brother.  When visiting, Bill would quietly insist that Jim do something; if Jim didn't respond, Bill would persist and  insist, until Jim blew up at him. The crazy thing is that it is always  over inconsequential things. Nothing that is important. (Example: Bill offered to help Jim open his milk carton. Jim said "no". Bill persisted by saying "I'm only trying to help you." Jim again says "no". Bill then proceeds to grab the milk carton to open it for him. Jim gets angry, swears at his brother and then walks away, now in no mood for his meal.

I have counseled Bill many times, and so has our friend Mike. This weekend in particular, I wanted to make sure that our birthday gathering was not ruined by such foolishness. I was very direct with Bill, warning him to never contradict or insist, unless it was something that was life threatening or dangerous. He finally got the message!

But what has happened now is that he hardly says a word to Jim, just kind of sits there observing. I'm realizing that he doesn't know how to interact with his brother any longer. Jim still has residual feelings about all of this. While Jim's memory is so poor, he would never be able to recount what had happened, he remembers how someone makes him feel. Yesterday when he saw his brother arriving on the unit, he said to me quietly "What an a$$*@#%".

Maybe, eventually, Bill will figure out how to interact with his brother. Mike is a good support in this area. He too, has been very direct with Bill. We'll see. But either way, it is no longer a concern to me. I wish there was a better relationship, but I can't control that. All I can do is to protect my sweetheart from this type of upsetting interaction.

Our house is on the market. I have a lot of mixed feelings about it. On the one hand, it is emotionally difficult, as this is a home we designed and built together. So many lovely, happy memories. But on the other hand, I cannot afford to remain in this house. Plus, the house is just to big for one person, and the one acre yard and landscaping is just overwhelming to me.

It's been a busy couple of weeks, getting everything pristine and ready for the photographer and the videographer. There actually is a youtube tour of our home! Very professionally done. Someone requested a showing for tomorrow afternoon. It's not a great time of year to sell a house. This Spring I expect that things will pick up.

My counselor, Dr. M. has been an amazing support to me. I continue to see her on a weekly basis. She has created a safe place for me to share what is going on in my life. She made the observation that by moving now, while I still have the essence of Jim with me, it might be easier psychologically. Given the predictable progression of this disease, if I wait too long to move, it might end up being a compounded loss; the loss of the essence of my sweetheart, and the loss of our home that we shared together. If I move now (or in the near future), it gives me a chance to create a "home sweet home" while I still have him.

Last week I met with our financial guy, Geoff, to go over some of the financial concerns that have been on my mind. As always, Geoff helps me to look at all angles of financial decisions I am making. He recognizes the importance of looking at the psychological factors that weigh into the financial decisions we make (quality of life, the happiness factor, comfort level etc.).

He commented that he was impressed with all that I have accomplished in the last 3 - 6 months. That surprised me, but as I think about it, there really have been a lot of life changes for us during this time period. But I never could have done it without the amazing support from all of the wonderful people in my life.

And that includes all of you, my dear readers. Once again, my heart is lighter. Thanks so much for listening.

Saturday, January 6, 2018

I'm So Happy With You...Will You Marry Me?

As I've mentioned before, Jim thinks that he is at home. When he sees me, he thinks that I am returning home from work. What a blessing! When I leave after spending some time  with him, I always make sure he is involved in some kind of activity. Then I lean over, whisper in his ear "I'm going to the bathroom. I'll be right back." He replies "OK". I then give him a kiss on the cheek and head out to go home. It has worked so well. No angst over me leaving for the day. His memory is such that he won't remember that I was there just a few minutes ago. Staff know to say that I am at work and will be home soon, should he ask about me.

The other day when I arrived for the afternoon he was just finishing lunch. He stood up, walked over to greet me, hugged me tight and said "Carole, I am so happy with you. Will you marry me?" Moments like this I will treasure forever. How lucky am I that he still knows me, still loves me madly, and is able to tell me every day how much he loves me.

Jim has had some new challenges. His incontinence is increasing and he wears pull-ups to protect his clothing. At home, we were just starting to have some intermittent problems in this area. At home he never agreed to wearing anything other than his usual underwear. But at the care home, I have removed all of his usual underwear so that the only option is the pull-ups.

I go to great lengths to disguise them. I've even purchased some on my own that are a blue/gray color, rather than the white. As I help him dress, I put the pull-up in the athletic pants so that he is not as likely to notice as he would if it involved a two-step process.

The other morning (I had not yet arrived) he struck a staff person in the face twice as she and another staff person were trying to assist him in changing after he had been incontinent with a bowel movement. I talked to the two staff who were involved. They were wonderful. I was able to express my concern for their safety. They both assured me that they were not hurt, and that these situations go with the job of caring for folks with dementia.

I am deeply grateful for such kind, caring and understanding caregivers for Jim.

My other thought on all of this is to imagine how difficult this change must be for Jim. At some level I am sure he is embarrassed. He also is likely upset and angry that he no longer has the control over all of his bodily functions. It must be so hard for him!

He is not always agreeable to showering. Usually I am the one that is helping him. I seem to have better luck than the staff at getting him to agree. I usually turn it into a light-hearted experience. I get the water nice and warm and then ask him if he wants to take a shower with me. His face lights up and he almost always says yes!

Once his clothes are off and he is in the shower, he is distracted enough where he does not question the fact that I still have my clothes on. I help him wash his hair. He can still wash his body, with some prompting and a little help with the soap.

The weather on the East coast has been brutal. Our neighborhood has not been spared. Thursday I had a nail-biting commute between home and the nursing home. The route there involves a very steep hill going down, and then coming up. I witnessed several vehicles trying to get traction, but unable to. The salt and sand doesn't work as well in frigid temperatures. In addition, the rate of snowfall made it difficult for the plows to keep up. The howling winds and blowing snow made visibility almost non-existent. Wind chill factors have been around minus 20 degrees Fahrenheit.

Here's a picture taken this morning from my window,  looking out onto our deck.

I made the wise decision to stay home yesterday and today. We've had well over a foot of snowfall in the last two days with another 8 - 12 inches today. Tomorrow the snow will stop and I'll head up again. It is hard on me when I don't see Jim. I know he is well cared for, safe and contented. But I still miss him when I don't see him everyday.

I've met with a realtor and plan to put my house on the market in the near future. In many ways I am very pragmatic, and this decision is a no-brainer. The size, the expense and the upkeep are way too much for one person alone. But there is another part of me that realizes that I am closing the door on a chapter in our lives. A chapter that was full of love, life and wonderful experiences. Of course I know that Jim will never come home. He will never get better. His decline is inevitable. I'm stating the obvious. But on another level my heart aches. It's closure on a very wonderful part of our life.

I'm looking at possibly purchasing a condo not too far from here. It's about 1,000 square feet. Includes a garage for these terrible winters. I want to stay in the area so that I can continue to be close to where Jim is and where my friends are.

2017 was a year of turmoil, sadness and change. I look to 2018 as a year where my sweetheart is at last contented and safe. And I will do my best to cope with the challenges that life has sent our way.

Another post is written. Thanks so much for letting me share with you what is on my heart and on my mind. I'm so grateful for the amazing support I receive from each one of you!