Sunday November 22, 2015
Harry Deitz
Reading Eagle - The nights were long, but sleep came in minutes rather than hours. The darkness wasn't enough of a blindfold, and the accompanying quiet was momentary and bathed heavily with the tension of anticipation, waiting for the piercing call of my name, over and over.
"Harry, Harry, Harry ..."
The cycle repeated every hour, and sometimes more frequently. It grew louder and more intense, until at last the brief rest was over, again, and I stumbled to answer a pressing and very real need.
There is no break for a primary caregiver in a family, whether by necessity or by choice. Unless you've been there, you will never understand.
For six years, I had the privilege of caring for my ailing wife, Mary Ellen, including almost 20 intense months before she died in September. It was an honor, but one that came with a heavy price. Don't most honors?
I wouldn't have traded a minute of that time with her because we were together. Yet, there were many times that, because of the impact, I wondered if she might outlast me.
If you are a primary family caregiver, you can relate. If you are not, you should know what could lie ahead for you or another family member.
We always were private people who would never think about sharing these things. I've had trouble understanding why all of this happened, and I came to the conclusion that perhaps some of it needs to be shared so we can help others who are going through similar challenges in their lives and feel isolated, overwhelmed and forgotten.
This is my story, my experience, my tribute to her. I'm proud to have lived through it, but not nearly as I am sad that it is finally over.
The background
The ravages of dementia are not something you can be prepared to handle. No matter how much you read or what advice you are given, the pain you watch your loved one experience and the unintended hurt that sometimes is cast on you are overwhelming burdens.
There is no magic wand that can fix it. There is no way to escape it.
For my wife and me, this difficult and unfortunate journey began six years ago. I noticed that her movement, especially when she walked, had become rigid, and she held her one arm high along her side. My first concern was that she had suffered a stroke. That might have been better.
Looking back, there were other signs. At times she would become uncharacteristically disagreeable and impatient, especially with me. She had occasional dreams where she would scream in the middle of the night.
We soon learned that she was in the early stages of Parkinson's disease. She was 57. At the same time, she was diagnosed with diabetes. At that point, in 2009, she was able to function on her own, although I started to see signs of confusion in her. We decided to get a second opinion and went to Johns Hopkins University Hospital in Baltimore, where doctors confirmed she had Parkinson's.
With those changes in her life, she also was being treated for anxiety and depression. In 2011, we started to see a local neuropsychiatrist who had been on staff at Johns Hopkins. His assessment was that she had Lewy body dementia. We soon would learn the differences and the similarities of PD and LBD, but clarifying that diagnosis was of little help, because the bad news didn't end there.
Routine bloodwork indicated possible liver problems. That led to a diagnosis of cirrhosis, which was shocking because she rarely ever drank even a glass of wine and didn't have hepatitis. It was attributed to nonalcoholic fatty liver disease. We also learned she had esophageal varices, a related condition that had to be monitored for excessive bleeding.
The next blow came in 2012, when she was diagnosed with breast cancer. If that had occurred years earlier, she might have had a complete breakdown. With everything else that she had been through, she handled that news and related surgeries more calmly than I ever could have imagined.
The worst was yet to come.
In addition to dementia, the liver disease caused hepatic encephalopathy, which results in confusion. These diseases were hitting her from all sides.
When our children were young and would tell us something wasn't fair, like many parents we would tell them, "Life's not fair." There was no better example than what my wife went through.
For me, it was overwhelming to understand and coordinate treatment involving 10 doctors, as many as 20 medications at one time and insurance coverage. The impact of it all was much worse on her.
Change and isolation
We had raised our family in a two-story house on 2 acres in the country, which made dealing with her medical issues more difficult. She no longer could drive, so I was driving to and from work to take her to numerous doctor appointments and for tests. I worried about how quickly I could get home if she had a problem.
Late in 2010, I made a decision that we needed to move to a house that had less property to care for, was closer to my office and the hospital, and had a first-floor bedroom and bath in preparation for when she no longer could use the steps. I wanted to move while she still was able to participate in finding a new place and making it our home.
It was a difficult time for her, and as her confusion increased during the next few years, she continually asked when we were going home. The move was, however, one of the smartest decisions I made for both of us.
The downside was that we no longer were in the community where we had spent more than 30 years. She had co-founded a preschool in Leesport and taught there for 23 years before the Parkinson's diagnosis. We had been active in our church, Scouting programs and community groups.
As she became less able to get around on her own, we became more isolated. Taking care of her and doing my job at the newspaper left little time for anything else.
We no longer heard from people we had known for years. Eventually, with the changes in her, I took some comfort in knowing that others didn't see what was happening to her. She had been smart, friendly, gentle and giving. As the dementia progressed, she became confused, withdrawn, angry and blunt. Still, it was hard not to feel abandoned.
During the final two years, aside from family members, the only visitors were several church friends and her best friend and partner in the preschool. When I needed help the most, it was family that supported and sustained me through calls, cards, visits and assistance. They still do. They are there when I need them, which is often.
The need to work
Early on, Mary Ellen was afraid she would end up in a nursing home. She begged me not to let that happen. While her mind still was clear, I promised her I would keep her at home and take care of her as long as it was physically possible. Despite many challenges, I was able to keep that promise.
At first, I needed to continue working to provide health care for her. After she had qualified for Medicare disability coverage, I considered staying home full-time and taking care of her. It would have given us more time together, but the quality of that time was declining rapidly. After much soul-searching and seeking advice from professionals and others who had similar experiences, I decided it was important to have my job as a brief diversion from the constant care and worry about her. Even though she never was out of my thoughts, my job required constant focus and attention to details, which provided an alternative perspective on what was happening in my life.
I also knew that eventually I would lose her, and the thought of not having her or a job to fill the emptiness scared me. One of the things that helped me to keep my mind clear was writing my weekly newspaper column.
As her primary caretaker and advocate, I had to coordinate all the appointments, diagnoses and medication. So I started to keep a written record of medical issues and significant changes in her condition. Eventually that evolved into a daily journal, not only about what was happening with Mary Ellen, but also what I was feeling.
For more than 41 years she not only was my wife, but also my best friend. We shared our most intimate thoughts. She was the only person I've ever really opened up to, so she knew me far better than anyone has. As her condition worsened, I saw her slipping away. She was unable to listen or give her opinion, unable to understand the things I needed to share with her, unable to encourage and comfort me.
The journal, which I started in the fall of 2011 and wrote until a month after she died, was my way of expressing many of the thoughts I would have shared with her.
Significant decline
Soon after we had moved to our new home, her confusion increased. She still was able to walk and use the steps, but that also gave her access to her medicine and the kitchen. Before we had moved, she had left the freezer door open one night and everything in it had thawed by morning. Shortly after we moved, she turned on the hot water in the bathroom sink, then walked away and forgot about it for a couple of hours.
She would take things from the refrigerator and put them into drawers or the freezer. My fear was her use of the stove, especially if no one was with her.
By this time, I already had taken over control of her medicine. In spite of that, twice she found it and took medicine on her own, resulting in increased confusion and a trip to the emergency room. I knew I couldn't leave her alone again.
I also knew I needed help.
Our youngest daughter agreed to give up her part-time job and work for us as a caretaker during the day, then I would be home at nights and on the weekends to provide care.
Mary Ellen had fallen several times, resulting in some bruises and at least one trip to the emergency room for stitches. She didn't want to use a walker or cane, but eventually it became necessary.
One day, while leaving a doctor's appointment at the hospital, she fell in the parking lot. We thought it was only a bruise, but it turned out to be a fractured tibia, which required an immobilizer. Her confusion was getting worse, and a few days later, she got out of bed by herself and fell again, this time fracturing her kneecap and breaking a window.
That was the start of a 46-day stay in the hospital and rehab center, complicated by a sepsis infection. There was a lot of agitation and incoherence during that time, including many calls from her to me in the middle of the night because of sundowning, mixing up her days and nights.
When she came home, things became worse immediately. She was trying to get up during the night, even though she was not able to walk alone safely. We got a hospital bed with rails to keep her from getting out of bed on her own. That caused more anger because she considered it a cage.
She was retaining water, so she was taking diuretics, which caused her to use the bathroom every hour or two. I was getting up with her between three and six times during the night, which meant little sleep. That, her growing anger and confusion and declining mobility were increasing the stress level for all of us. Our daughter reached a point where she no longer could physically handle Mary Ellen. I knew I needed trained help.
I hired a live-in aide through an agency because I had heard stories about people hiring in-home help privately and having security problems. Over the course of 17 months, we had nine different aides, the longest for 34 weeks. I was concerned about bringing a stranger into our home, but we were fortunate because we didn't have a bad experience with any of them, and the first and last ones, who were with us the longest, were especially patient and compassionate and blended in well with our family.
It was difficult financially, because that expense was all out-of-pocket. It gave me comfort, however, that she was well taken care of while I was at work. I had to prepare the evening meals, and I was on my own with her during the nights and the entire weekends.
The nighttime bathroom routine was getting worse, despite numerous trips to the hospital for a paracentesis because of ascites (fluid in her abdomen that had to be drained). I moved from the bedroom to the sofa in the family room near her bedroom to sleep, hoping that if she didn't see me she might not call for me as often. It didn't work.
I was having trouble ignoring her calls for help because I didn't want her to suffer. I started to keep track of the number of times I was getting up during the night. We had her on a schedule of getting up for the day at 6:30 and going to bed at 9. Most nights, she called to get up five or six times. The worst was 11. Simple math proved that meant little to no sleep.
Overwhelmed
It's amazing what the human body is capable of doing. When you love someone, you put that person's needs ahead of your own. My unresolved dilemma was, what would happen to her if I weren't here to take care of her?
For six months, my sleep was mainly in one- to two-hour segments. Somehow I managed to go to work during the week, continue to write, make decisions and keep schedules, but the lack of sleep was taking a toll on me.
Our oldest daughter lives out of state and has four children and a job, so it was hard for her to be here, but she called every day. Our other daughter and son live nearby and in the beginning were having trouble accepting what was happening to their mother and balancing their own family lives. Plus they always seemed to believe their father could handle anything and fix it. This time I couldn't.
During an appointment with Mary Ellen's neuropsychiatrist, he asked how I was doing, and I mentioned the lack of sleep. He talked about the importance of sleep cycles and warned me that at some point my brain would just shut down. A few weeks later I understood when I felt I was going to collapse in the living room. About a week later, as I crossed the street at my office, that happened again, and this time it scared me.
Something had to change.
A solution came as the result of a conversation with our aide. She suggested we get Mary Ellen up only once during the night and ignore her calls unless she seemed to be in distress. As difficult as that was, it worked for all of us. I moved back into the upstairs master bedroom and finally was able to get some sleep. The aide and I took turns getting her up one time during each night. Family members became aware of the severity of the sleep issue and stepped in to provide some breaks for me.
I felt better within a week, but nowhere near rested because I still was not sleeping soundly, anticipating her calls. At least I now felt I could function.
The pain of dementia
Dementia is a cruel disease for the victim and those around her. It hurt to see her confusion. It hurt even more to see her frustration and anger.
Early on, she would use the wrong words, for example, "car" when she meant "cup" or "the word" instead of "pants." She would pick up the television remote to try to make a phone call or her reading glasses to try to eat.
There were hallucinations. The most common one was a little boy in a red baseball hat, whom she saw before and after we moved. She talked about people who had died. At one point she was convinced she was having a baby boy.
The outbursts of anger and defiance were more difficult to handle and too personal to share.
Sometimes it was hard not to laugh when she would become angry and weakly try to kick or grab at us as we were tending to her. More than once I cried at her frustration as she lost her independence, privacy and dignity. Sometimes we cried together.
Her personality changed drastically, and the gentle, refined and loving person at times became nasty. Those were the times when I was thankful for our isolation.
Some nights she would call out, and when she didn't get an answer immediately or the response she wanted, she would threaten to call the police and 9-1-1. She would have called if I hadn't taken the phone.
One time she became very frustrated and started to scream: "Harry, Harry, Harry."
When I didn't respond immediately, she started to repeat, "help!" then "police!" then "fire!"
I waited a few minutes to see if she would calm down, then she said in a clear voice: "You'll like this one: rape! rape! rape!" When I went to her, she began to cry.
There were things she said that I feared would be burned into my memory, and I worried that those would be the things I would remember about her. Nothing came close to when she would look at me late at night and say, "I hate you." I knew she didn't mean it and that it wasn't her. If she remembered it the next morning, she would tell me how sorry she was and how much she loves me.
Since she has been gone, however, all my memories of her are good ones, the kind that make losing her hurt far more than all the anger, pain and stress I lived through.
There were some good moments, even in her final months.
During our many years together, I knew she prayed, but it always was silently. In the final year, she began to pray aloud in a conversational way that was more intimate and beautiful than any prayers I've ever heard.
In the middle of one night, she talked about each of our children and what she hoped for them in life. Another time she told me about a bright light in the shape of cross in the closet that then disappeared. She wanted me to go with her to the light.
One day, exactly eight months before she died, we were alone and talking about answers to prayers. I recorded our conversation:
"Sometimes it's just you have to listen," she said. "Do you ever do that?"
Sure, I replied.
"You haven't gotten answers, huh?"
Sometimes you have to wait and be patient. Are you patient?
"Definitely not."
Well I'm glad you're still here with me, are you?
"I'm (then she paused for 7 seconds) well, where'd he go?"
Who? Where did who go?
"He's gone."
Who?
"He called him. He didn't go. He's not ready."
Who are you talking about, honey?
"We have to go together."
We have to go where?
"Some day he'll come back and I'll be ready."
Who will come back?
"At least he doesn't have me crying all the time."
Then she stopped talking.
During the next six months, there were fewer of those conversations. There were fewer words at all.
Hospice and the end
In June, I took her for a CT scan to check on the condition of her liver and pain she was having in her back. We learned she had a compression fracture in her vertebrae. It also showed that the cancer likely had returned and had spread to her lungs. Because of all the issues she had and the limited options that came with treatment of one problem that would make another worse, several doctors and I decided not to do more testing. Even if cancer was confirmed, there weren't any good treatment options. We decided to keep her comfortable with the help of hospice.
Sixteen months ago, doctors had estimated she had 1 to 1 ½ years to live. The thought of hospice was a sudden realization that we were near the end. With the hospice nurse visiting weekly, an aide coming to help with bathing twice a week, and a social worker and spiritual counselor coming occasionally, we had more help. I learned how to administer additional medication, including morphine, and we discussed end-of-life issues.
After hospice started, as I would make appointments for later in the year I would think about what my life will be at that time. Will she still be with me? Or will I be alone?
As we headed toward fall, she was continuing to lose weight, but she seemed to stabilize, raising my hopes that there was more time than I had thought. Perhaps we would spend one more Christmas together.
In September, I went to the shore with our daughter and her family for three days for a much-needed break, while our other children stayed at the house to help care for Mary Ellen. The beach was one of her favorite places, and I thought a lot about her and our life together while I was there.
When I came home on Sept. 16, she was much weaker. She had been sleeping more than 20 hours a day. Now she was barely able to stay awake.
The next morning, she leaned forward as I was checking her oxygen level and whispered, "I love you." I thanked her and told her I love her, too. It was the last real conversation we had.
Sept. 18 was a Friday. The hospice nurse visited in the morning, and we had trouble moving Mary Ellen from the recliner to the bathroom.
The aide came and they gave her a sponge bath in bed. We discussed then that she likely would be bedridden from that point on.
Later that morning, I was at work when I got a call from a former neighbor who wanted me to drop what I was doing and join him and some others for lunch. Reluctantly, I agreed. When I arrived at the restaurant, he asked about my wife, and I told him she wasn't doing well.
Two others at the table were doctors, each of whom had lost his wife. One of them said to me that he wishes he could have just one more conversation with her. I told him that I've been losing my wife slowly for several years, and we haven't been able to have many conversations for months. By the next day, I understood what he meant.
That night, I went home and she was in bed. She had been there and sleeping all day. I sent messages to our children that she had taken a bad turn and likely would be in bed from that time on. When our son came to our house, she was semi-responsive but calm. He and I sat on the deck, ate supper and talked until a little after 8.
By 9, she was gone. She had been struggling to breathe, even with oxygen. She motioned to us and tried to talk, then fell asleep again. After three breaths separated by long pauses, she stopped breathing. Despite six long years, the end came so quickly that I wasn't prepared. I had expected another month or two.
Now, even with the constant support of my family, the emptiness in my life is beyond what I could have imagined.
What I have learned
I had struggled with the thoughts of losing my wife and best friend. We all die, but I wasn't ready for this. We had worked and looked forward to the time when we could retire and spend more time together, travel and watch our grandchildren grow up. It is all gone far too soon.
Sometimes I've thought about children who die, or young parents. Some people believe that's far more tragic and painful, but it's not. When you love someone, a loss is a loss. Every one hurts. When are we really ready for it?
I've also thought about people who die suddenly and miss the chance to say goodbye. Is that worse than watching someone you love slip from this world slowly and painfully? I actually lost her twice: first, when she no longer could share in our life together, and then when she physically left me.
It isn't in my power or ability to explain or even understand all of this. All I know is that it hurts. The emptiness is beyond words. As hard as it is to believe, there are times when I would be glad to have one more of those sleepless nights, just to be able to see her and touch her again.
Through her, I learned so much in those final years.
That even when you are overwhelmed, you can find strength to continue.
That when you feel alone and abandoned, the people who matter most will help.
That although your situation is unique, there are many others in the world who are experiencing similar challenges.
That others will see what you do and learn from it.
That when you are a caregiver, you do need to take care of yourself, but you can't be told that; you have to learn it for yourself.
That some things can't be fixed.
That every loss hurts.
That you will not be prepared for the end.
That when your caregiving journey is over, your life will have changed forever.
I often wondered: Why her? Through it all, I grew weary but never resented or regretted taking care of her. I had no doubt that if our situations were reversed she would have done everything possible to take care of me.
Her final gift to me was this story. It led me to understand the depth of my love for her, what is really important and the privilege I had to share her life and to care for her at the end.
One of the benefits of this experience is being able to share it and help others who are living through a slow process of dying. It won't make your experience easier, but it will help you to know you are not alone, even when you lose the most important person in your life.
For me, it's quiet now at all hours of the day and night at home. I walk into her room, where she no longer suffers. I tell her I love her and miss her. There is no answer. I finally have the time to rest, but now I long to hear her call out, just one more time:
"Harry, Harry, Harry ..."
http://www.readingeagle.com/news/article/a-caregivers-story
https://nwpf.org/stay-informed/news/2015/11/a-caregivers-story-living-and-loving-through-the-slow-process-of-dying/
