One Year Later....

It's hard to believe that tomorrow it will have been a year since the passing of my sweetheart. Approaching the anniversary it seemed fitting to return to my blog; the source of immense support to me through this very difficult journey. Today I read my very last entry from a year ago, and with tears streaming down my face, all the raw emotions came flooding back.

Grief. I've learned so much about this very difficult and painful emotion. When I think about it, my grieving started several years ago when I first became aware of what was happening, that dementia was taking over the life of my dear husband. I grieved every day, some days were harder than others. And once he had transitioned from this life, the grief of course did not go away. It was there, and is still there today and every day.

I remember shortly after he passed, I started thinking that eventually I would be able to move beyond all this grief and sadness, and find my way to an emotional equilibrium. I should be able to eventually get over it, right? I mean, I'm not going to be grieving and sad for the rest of my life, am I?

Not that long ago, I came to the realization that I'm a different person now. I can never go back to who I was before dementia came into our lives. Our life together, and then the subsequent loss of his life is a part of who I am now. This is who I am. Forever changed by our love that we had for each other, by our life together, and then by the loss of his life. And that's OK.

So what does that mean for my future life? I'm still figuring that out. Healing is taking place; I find great solace in reading. Two of my favorite authors, May Sarton and Mary Oliver have been a source of comfort to me. Oliver writes poetry exquisitely with a theme of nature that is so comforting. Sarton  journals insightfully about her life, her observations, and her healing from life's difficulties.

I also find great comfort in reading Thich Nhat Hanh. He has helped me to open my heart and my mind to a more spiritual way of thinking.

This is my reading corner. My condo overlooks a stream that is just beautiful. Such a peaceful setting, providing tranquility. I'm so grateful for such a lovely living space.

I still see Dr. M. on a weekly basis. From the beginning, she reassured me that I would not have to walk this journey alone. What a tremendous support she has been, providing me guidance, insight, and helping me to heal. Her deep compassion and empathy have allowed me to begin the journey of healing.

My dear friend Jabberwalky is still in my life. We have developed a lovely friendship over the last 4 years; first by following each others' blogs, and then through email correspondence for a closer connection. She too, has a spouse with dementia and knows only too well how difficult, sad and lonely it can be. Lately we have been doing FaceTime, which has been great. We're hoping for an in person visit sometime in the future, once it becomes safe to travel again. The support that we have been able to provide for each other has been nothing short of amazing. So grateful for this connection and friendship.

Jabberwalky shared with me 4 words that have helped her, and that I have taken to heart.

                                                                Grieve
                                                                Feel
                                                                Breathe

                                                                Accept

It's OK to grieve, it's OK to feel sad. And breathe, just breathe. This is all part of the healing process.

The hard part; Accept. But so important. And that is where I am at now. Starting to accept that this is who I am; forever changed by life experiences. I am a different person. And you know, I think I'll be OK. I've become very introspective as I sort things out and figure out my way forward. 

I still feel his presence every day. I know he is with me, and there is joy and comfort in that knowledge. 

So will I be sad and grieving for the rest of my life? I think the answer is yes. Will it change and become less intense as time goes on? I believe so. I do manage to find joy in my life. Family and friends are so very important. 

An irony of sorts, that the deep grief that I feel is evidence of the deep love and connection that we shared. I'm so grateful for that life of love that we shared.

Be yourself

Life is precious as it is

All the elements for your happiness are already here

There is no need to run, strive, search or struggle

Just be

-Thich Nhat Hanh

Transition....

I knew it would happen eventually. Just wasn't expecting it quite so quickly. The betrayal of his physical body and his brain...he didn't deserve that. No one does.

This is a very hard post for me to write. The last couple weeks of his life things moved pretty quickly.  The dementia had spread to his brain stem, the part of his body responsible for the very basic functions of life that we take for granted; ability to swallow, breathing, and functioning of his heart.

It is too raw and painful for me to share all of the details of the end of his life, but I will tell you that up until the last two days of his life, he was still able to let me know that he felt my presence. At the end, I was spending all day and night, not wanting to leave his side. I would sleep right next to him in his small single bed, and he would snuggle right up to me, as if acknowledging that he knew I was there.

The last day of his life, my sister stopped by for a visit in the afternoon. She has experience as a hospice nurse, and her presence was very comforting. She left after a couple of hours. At that point I just crawled into bed with him, totally exhausted myself and just wanting to be close to him. I sensed that he was near the end. I laid my head on his chest and just closed my eyes, just resting, not sleeping. Just the two of us, with me holding him in my arms. I suddenly realized that his chest was no longer rising.

I like to think that he chose that very special moment in time to transition from his body. Physically together and holding him close for the last time. It was all very surreal. But also very peaceful.

Shortly thereafter, two very dear friends (who didn't know each other before that day!) Amy and Camille, came by. They both had planned to stop in for a visit. Little did they know that their timing was nothing short of a miracle. They helped me with some of the more practical things that had to be done. And then Amy followed me home and stayed for a while to make sure I was ok.

The last two weeks have been a blur. Phone calls to be made, final details for arrangements...all the things that must be done at a time like this. Calling hours were a blessing I never expected. So many people came; the consoling words and the many wonderful and kind things that were shared about him really touched my heart.

Family and friends have been amazing. So grateful for their kindness, caring and support. Dr. M. has been with me every step of the way. Her reassurance that I did not have to travel this sad journey alone, that she would be there to support me, has given me so much comfort and encouragement. I was able to share my deepest sorrows with her, knowing that she provides a soft place to land, during this very difficult time of life.

Jabberwalky, who has walked this journey for a very long time has been an incredible support to me as well. Having a spouse with dementia, she knows first hand how difficult it can be. Our email correspondence has helped both of us to keep our sanity. It helps so much to know that someone else really knows and can relate to the heartache  of watching a loved one succumb to this disease.

My sweetheart. His body and his brain failed him, but his soul is within me. I feel his presence. Every day I feel his love, his gentle kindness and his soft voice telling me that he is still here with me. It's the guy I fell in love with; the dementia has him no more. He is finally free of this cruel disease..

Gratitude:

*  He found a way, even at the very end of his life to let me know that he was still there!

*  My hairdresser Lisa, who came every 4 weeks to cut his hair. They had a very special connection, and one of the sweetest things she said was that she would still come to see him even if he was bald!

*  Healing relationships. A gift from him that I never expected; his illness and passing has brought family members even closer together.

*  Gifts of love and caring from friends and family. The thoughtful phone calls, visits, offers of help; all so appreciated.

*  He is still with me. I hear his soft voice, reassuring me, telling me he loves me, and letting me know that he'll be with me as I transition into uncharted territory. I won't be alone.

*  And for you, dear readers. When I poured my heart out, you were here for me. The kindness, the thoughtful comments, and the caring has touched my heart. You reached out to me to let me know that you cared. And that means the world to me.

Progression to Fisher's Clinical Stage 7D

Profound, overwhelming sadness. That pretty much sums up how I'm feeling these days. My head still spins when I think of how fast everything seems to be progressing.

I have updated the Progression of Dementia page, which you can read here.

Jim's increased somnolence has resulted in less food/beverage intake. He has lost 7 pounds in the last month. A while back, his diet was changed to include more finger food, as he was no longer able to use utensils for eating. For example, if spaghetti and meatballs was on the menu, Jim might get a burger on a bun or some other type of food that he could hold in his hand and feed himself.

At this point, he is no longer capable of managing the finger foods either; he must be fed all of his meals. I've requested the return of the regular menu items, hoping they will be higher calorie and more palatable. We'll see if that helps prevent some of the weight loss. If not, the dietician is suggesting a high calorie shake midday. Would he even be able to wake up for that?

He continues to sleep most of the time, day and night. Staff get him up for meals; sometimes he is just too sleepy to eat, literally falling asleep at the table.

Over the last couple of weeks I've noticed that Jim's respirations are quite irregular. While sleeping, he has pauses in his breathing for 20 - 30 seconds, followed by several rapid and deep breaths. The doctor confirmed that Jim is experiencing what is called Cheyne-Stokes respirations, resulting from damage to his brain stem from his dementia. This is not a good sign, and confirms that Jim is closer to the end of his life.

He is starting to lose the ability to hold himself upright when sitting in his wheelchair. PT has provided a bolster/support for his lateral lean to the right.

Last week was particularly rough. Intellectually I understand exactly what is happening. But emotionally it's very difficult. A good friend of mine gently suggested that it might be time to make final arrangements. I knew she was right, but it was so hard to make that phone call. My brother accompanied me to the funeral home; he has been a tremendous support to me. Having him there to discuss options and plans made it so much easier. So it's done. Arrangements have been made.

I'm spending quite a bit of time with Jim these days. It's comforting for me to be there with him. Of course most of the time I'm watching him sleep. But when he opens his eyes ever so briefly for a few seconds, I'm so happy that we are there together. I take my iPad with me along with the math puzzles that I love to do (KenKen). And at the good suggestion of Dr. M., I've incorporated one or two outdoor walks while I am there.

When I go to bed at night, my phone is on the nightstand. I'm dreading the call. But it will come, of course. And when it does, I'll know that even though his physical body will be gone, his spirit will live on. He will always be a part of me.

I had a dream the other night that seemed so real! Jim sat up in bed, looked at me and said "Oh, don't worry, I'm OK. I'm right back to normal." And in my dream I believed it to be true.

I'll know the end is near when he stops eating and drinking. The other possibility is that the Cheyne-Stokes breathing pauses have the potential to result in an abnormal heart rhythm that could end his life. I just know that I want him to be peaceful and comfortable as the time nears.

I have amazing support in my life. Dr. M. is my safe harbor where I can process all that I'm going through. I can't imagine not having her by my side on this journey. Family and friends have all stepped up to be there for me, supporting and encouraging, saying just the right thing. And I'm ever so grateful to my friend jabberwalky, who over the miles has been an amazing friend and support to me.

And of course to all of you dear readers, who have been, and still are, on this journey with me. Your encouragement and kindness means the world to me.

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.

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.

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.

  

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.

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.

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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.

"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.

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.

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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. 

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.

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.

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.

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.

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.

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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.

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. 

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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. 

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!

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.