CAREGIVING: AN EMOTIONAL ROLLER COASTER

I started writing about our dementia journey on the day after Deena was diagnosed in June, 2017.  I’d never journaled before.  I’m not even sure what made me think to start on that day.  Maybe I thought that documenting the events of the journey would help me learn what worked and what didn’t work.  Maybe I knew somewhere deep inside that this journey would have many highs and lows and writing about them would help me understand them better.  Or maybe I hoped that writing would provide an outlet for my thoughts and feelings.

Whatever my subconscious reasons for starting, I’m so glad that I did.  I didn’t write every day.  Sometimes a week, 10 days or more would go by between entries.  I liked to write in the quiet of the morning, which was easier during the period that Deena slept until 10:30 or 11:00.  When her sleeping habits changed, I struggled to find the quiet space I needed to put my thoughts and feelings on paper.

I used the journal to document the events of our lives.  Trips, doctor’s appointments, company, the COVID pandemic were all subjects in my journal.  I wrote about the day-to-day occurrences, big and small, that shaped our life.  

I often would read earlier entries to understand what our life was like 6, 9, 12 months before.  That exercise helped me to see the changes in our life over time and to track Deena’s decline in a way that just relying on my memory would never have allowed.  I recently tried to read the entries of the last 9 months of Deena’s life, but it was still too raw, too painful to do.

And I also wrote about the emotions Deena and I felt in that moment.  I documented our laughter, tears, tenderness, anger.  I closed each journal entry with, ‘Today, I feel…’. I didn’t want to capture just the events that became the fabric of our life, I wanted to describe my feelings, my emotions that were so much of my caregiver’s journey.

I recently went back through my journal entries and made a list of all the words I used to describe how I felt at the end of each entry, an exercise that I suspect Deena, wearing her psycho-therapist hat, would have found much to analytical for feelings. 

What I found was that over the course of 3 ½ years and 150 journal entries, I used about 70 words to describe my feelings.  I used a few words like ‘content’, ‘thoughtful’, ‘relieved’ each a handful of times.  Other words, ‘worried’, ‘anxious’, ‘apprehensive’ got more than their fair share of use.

While there were many difficult days, there were also days filled with love and laughter.  

August 2017:

Who knew Deena would develop a new skill in the early stages of Alzheimer’s? Neither one of us has any musical ability. We can’t play an instrument, we couldn’t carry a tune if our life depended on it, we don’t even know the lyrics to many songs.

So, image my surprise when Deena started whistling a song that was 1) in tune and 2) recognizable. We sat outside while she whistled songs that I named. I honestly haven’t laughed that hard in ages. I could barely breathe I laughed so hard. Oh my god, it felt so good.

Today, I feel happy to laugh again…

Some days made me very sad.

June 2018:

Deena has always been a big reader, magazines, newspapers, books. We’ve spent hundreds of enjoyable miles in the RV with her reading a book or magazine to me while I drove. But lately, she has trouble concentrating long enough to actually read anything. She spends a lot of time skimming the internet on her phone or iPad but does very little actual reading. She started a book over a year ago that has been carted around for thousands of miles and yet she’s only on page 23. We joke these days she’s more of a book buyer than a book reader.

So, her reading this current book is noteworthy. Yesterday, we sat in the shade of some pine trees reading. I happened to glance over at her and noticed for the first time that she was softly reading the words in the book out loud, under her breath.

I could tell she was really working at it, without any idea what she was doing. It seemed to take all of her effort. I was so proud that she was trying so hard. And I was so sad to see that this very smart, articulate woman had declined to this point. It broke my heart.

Today, I feel sad…

And some days were filled with anger and tension.

May 2018:

Friends came over as we were finishing dinner. We sat on the patio for about an hour, just talking. At some point during the conversation, I apparently interrupted Deena, and she was off! She barely held it together until they left and then she just lost it.

I’m sure she’s right that I did interrupt her, a rude, irritating habit that I’m still working on changing. So, she was right to be unhappy with me about my behavior. But her reaction was so big, so out of control, it was just a classic example of “It’s not Deena. It’s The Disease.”

She ran off the rails for over an hour until she was too exhausted to keep it going. I apologized over and over, but by that point she didn’t really remember what had started the scene. When that happens, time is the only thing that really brings closure to the issue…

Today, I feel anxious…

Some days made me grateful.

September 2017:

I went to the first session of the Alzheimer’s Association CarePRO class yesterday afternoon…At one point we were asked to describe our feelings. People said things like ‘angry’, ‘depressed’, ‘scared’. I said ‘grateful’. I truly am grateful for this time that Deena and I have right now. A time when she is still so verbal and able to be engaged in our life. I know that this window will close, that there will come a day when the Deena I love and married will be gone, there but not there. I can’t stand the thought of that. I just want to squeeze every ounce of life out of this time that we can.

Today, I feel grateful…

As I went through my journal and read just the words describing my feelings, I remembered the roller coaster of emotions that come with the job title ‘caregiver’. The happiness, love and peace described in different entries, were intermingled with the feelings of ‘sadness’, ‘exhaustion’ and ‘tension’.

All of these feelings were real. Some were easier to manage than others. None could be denied. As I reflect back on our journey, I choose to focus on the best of our journey, not the worst. Not the oceans of tears or the times of anger, but on the love, the sweetness of our life.

May 2018:

…It was one of those very special times. We talked about how happy we were with the life that we’ve built in Tucson, how much we loved our house and yard, how proud we were of how we were handling this giant change in our life. We were so connected, without any tension or anger buzzing around us. It was wonderful.

I’m not sure if Deena will remember that special hour when she wakes up this morning or not, but I will. It’s a moment that I’ll cling to when things get rough, and I need an anchor to hang onto.

Today I feel very content…