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.