Posted 18 March 2003

Installment 6: This is the final installment in Sarah Goodwin's "Chronicle of Caregiver." Names have been fictionalized to protect confidentiality. We welcome your comments.

See additional installments: |1|2|3|4|5|6

One morning after Fred had had terrible leg cramps during the night, I demonstrated a simple exercise for the hamstring muscle, but he couldn't understand how to do it. The next day he was grumpy and looked especially dazed. That evening we had a bad argument because we were supposed to go to a family party at Ginny and John's, but a snowstorm was predicted, and he didn't want me to drive in it. Fred believed that the party should be cancelled, but Ginny and I decided to hold it at our house. Fred was upset, saying that my kids were stupid to drive that night. I refused to cancel the party, saying that they were all adults who could make their own decisions. They all came. Fred retired to the den while we played games. Not a flake of snow fell. A good time was had by all—except Fred. I could not give in to him that time.

He did come back to the party room to say goodbye to the kids, who left around 10:00, but on Sunday morning he was too tired to go to Mass. I went, and then made him a nice breakfast, and he was in a good mood all day!

Monday he was grumpy. We went to a movie so I wouldn't have to listen to him. But it was dumb.

A few more strange things had to do with perception. Fred would get plots of two consecutive TV programs mixed up. We were learning on TV news that Fingerhut company shut down in St. Cloud, Minnesota, and the employees went to Cincinnati to protest. Because Fred's grandson attended college near Cincinnati, he said, "I wonder if Andrew is watching this." No way.

Watching a show about Peru, Fred said he'd like to go to Peru again some day. My way of thinking was that we could never make such a trip, but it was really touching and encouraging that he would be optimistic about such a thing. On another occasion when he couldn't tie his tie, he said he was "stupid," I said he was not—that I couldn't remember how to cook things that I used to make all the time. It was true.

A new and disturbing problem arose in January. Fred was getting food stuck in his esophagus. At least that is what I thought, as he was not choking but complaining of pain in his chest. He had previously asked me to leave the tomatoes in larger chunks so he could see and spear them. I then began to cut things smaller so he wouldn't have trouble digesting. He thought it was a hiatal hernia. As he was now registered with the Veterans Administration Medical Center and had been assigned a primary care physician, he called her about his problem. She said we should take our cruise, but make an appointment for right after his return.

On February 15 we were supposed to meet Brad, Lillian, and my brother Bert at the Cattle Company on Snelling Avenue, but Lil said that Brad had a cold and she didn't want to infect us before our trip. As Brad could not drive, she drove them all the way from Edina just to exchange gifts and cards outside the restaurant, and then they ate at Pearson's in Edina. That left three of us for lunch. Fred ordered a steak sandwich, which I tried to caution him against, and the very first bite stuck in his chest area, where the trouble was. He headed toward the restroom—and I should have realized that he wouldn't find it—when he had to regurgitate into a wastebasket near the hostess's stand. Fortunately, there were no customers around, and a waitress brought him some water, saying they were lucky to have had a wastebasket handy.

As our meeting for lunch was supposed to be a celebration for Fred and Lillian's February birthdays, it was a disaster for them both. She and Brad became extremely ill with the flu that evening, and fortunately their son Dick was arriving from California by plane later that night. He found his mother in bed and his father in what she thought was a coma. Brad's dementia had been deteriorating to the point where he had been turning on water faucets all over the house at night, and my sister was exhausted and confused as to what to do. Well, Dick made the decision to put his dad into a nursing home, which took place several days later. Lillian and I were to enter into another phase of empathy.

As our experiences with Fred's eating problems continued, we became worried, and I ended my journal one day with, "End of the day, I think!" No matter how small I diced meat and vegetables, Fred had bouts with "stuck food." He could not eat bread in any form, and I served pureed and mashed food or soup.

February 25 was the day of our cruise, and rather than fret about Fred's eating problems—as we knew how to counteract that—I worried that his table manners would cause me embarrassment. Fortunately, our table companions—just one couple—were delightful, and seemingly understanding, as we told them about Fred's digestion problem. What I did not anticipate was that, when asked later about the Jacksons, Fred said, "I couldn't stand the guy!" It was another case whereby Jim was a retired teacher who expounded on every subject I introduced, and Fred had nothing to offer, nor was he interested. Jim and Prudence didn't seem to notice or mind, as they had a captive audience to beguile with accounts of their world travel, knowledge of wine and music, language skills, etc. Actually, I rather enjoyed being educated thus, as I reveled in any opportunity to commune with adults, intelligent or otherwise.

As for striking up a friendship with another couple, it was slated to fail, but I had had no expectations. If we met people at a cocktail lounge, they would quickly ascertain that Fred would not engage in the conversation. I was all right with that and enjoyed the fabulous Rotterdam cruise ship, the scenery, the Canal entry, and, of course, the food. Fred found that he preferred to eat at a buffet, where he could choose eggs, ice cream, and several other soft items. Besides, he could then avoid a meal with the Jacksons!

We would bring our plate of lunch to the pool area and watch the swimmers. A little waiter from the Philippines noticed Fred's slow and hesitant search for a table and began to carry his plate, fetch his beverage, and stand nearby, occasionally engaging in conversation with us. He became our friend, and I gave him a generous tip at the end of the week. He also presented us with a beautiful origami creation of birds and corks inscribed "Ferd and Sarra." It is now a prized possession.

All in all, the cruise went quite well, and Fred especially enjoyed the shows. Moreover, he kept me up till 11:00 one night, dancing in the Crow's Nest Lounge. I can't say that his footwork was as fancy as it used to be, but I could not help but enjoy his effort.

After the cruise—which I was very happy to have made—life began to settle back into our roles of patient and caregiver, which, of course, I had expected to occur. It was difficult to reenter occasions of arguments like my driving. One day, on the way to my daughter's for a party, Fred's criticisms drove me to yell at him, "I'm a good driver, dammit! Now shut up!" I had never said that to him before, but he remained quiet the rest of the way. We entered Ginny and John's house with fake smiles on our faces, greeting the other guests as cheerfully as possible. When I wanted to stay a while later to join in a board game, Fred had a growling expression on his face. Perhaps because of my previous outburst, he didn't dare cross me and consented to play also.

The surprising thing was that he rather enjoyed it, as he could answer questions about music. Later, after arriving home from a ride in driving rain, Fred said, "Amen! Good job driving!" That was an example of his attempt to be nice, which was his true nature. Pleased as I was, it was an exhausting evening, and the next morning I felt depressed, but mostly because of how badly I had treated Fred.

Another incident that made me feel sorry for him took place when I was tired and trying to balance our three checking accounts. I also had a problem to solve for my son Ted, who is developmentally challenged (which they now refer to as "differently abled") and for whom I maintain a great responsibility. In no uncertain terms, I told Fred I was on overload, and he said, "Maybe I'm in the way." There is no way to describe my feeling of sadness and sympathy in realizing how he felt about himself. Of course, I attempted to comfort him and assure him that I hadn't meant it that way. Previously, I did not know whether Fred could understand what I was going through.

What I did know was that he was becoming more and more dependent upon me, and I needed an occasional opportunity to temporarily "sever the umbilical cord." He was too tired to take a walk one day, so I asked if he wouldn't mind if I walked alone near our home. That was all right, but I noticed that he was watching me walk: After one of those days, I dreamed that Tom found me an apartment that was old and small, but acceptable. I interpreted it to represent my subconscious wish for freedom and solitude.

As I mentioned before, it was impossible for us to have an intelligent conversation. If I began to discuss a subject that interested me, Fred would look at me blankly as though he could not follow the train of thought. Any idea would have to be expressed in short, simple sentences. If there were several possibilities for dining out, going to a movie, or planning an event, I could not give him several choices. I would say, for example, "Would you like to eat at Awada's?"—wait for a yes or no, and then go on to the next choice, if necessary. Our best entertainment was music, either on television or live. One October day we had driven to Harriet Island to walk and happened upon a German festival with a large orchestra. We both enjoyed it immensely, and I decided to seek out such events.

As Fred's mental lapses increased, they were accompanied by physical ailments, both real and imagined. He had a scalp condition called seborrhea, which I treated twice a day with drops and cream. As Fred's mother had died as a result of cancer on her scalp, he was worried that it was happening to him. His back hurt terribly, and Dr. Kennedy had found nothing wrong except possibly arthritis. He had foot problems that didn't heal well. The poor man said, "I'm falling apart!" His prescription bills were so high that admission to the Veterans Administration became a great help in that regard. When he saw his doctor, to whom I will refer as Alice Cook, she set up appointments with a neurologist, dermatologist, and ophthalmologist, but they never materialized, as Fred's digestion problem took preference.

As suggested before the cruise, Dr. Cook arranged an esophagram, endoscopy, and consultation with an esophagus surgeon who, for privacy, I will call Dr. Kincaid. A malignant tumor was discovered that would require either chemotherapy and radiation, or possibly surgery. Further tests included an ultrasound and PET scan, which took place the first week in April.

All of this pushed the Alzheimer's disease into the background temporarily. At least it was something Fred and I could discuss with each other and his sons, who lived in Arizona and Wyoming, and immediately began to make plans for visits here.

On March 30 I had written to describe our mode of togetherness, "These are my shoes, and they fit," as I became accustomed to the situation. A week later I wrote, "Well, the shoes are getting tighter," because the tests indicated that surgery would give Fred approximately two years of life, but the alternative did not offer much hope at all.

Surgery was performed April 16, resulting in the removal of his entire esophagus and his stomach being attached to his throat. Although the cancer was in the lymph nodes, the hospital personnel worked unceasingly to attain the goal of prolonging Fred's life. The ensuing three months at the VA Medical Center were a nightmare for all of us. Greg, Doug, and Penny traveled to be with us. My son Dan and his wife Annette, son Graham and his wife Sally, Tom and Ted, Ginny and John, and many good friends helped not only by visiting, but by helping me in other ways when things got too rough.

For Fred, it was worse because he could not express himself well enough to explain his needs. Dr. Kincaid had warned us that the surgery may exacerbate the Alzheimer's disease, which it did. Parkinson's also set in, and the tremors increased. In addition, Fred had been taken from me and placed into the hands of strangers, albeit capable nurses and doctors. He would wake up early in the morning and ask for me, becoming very distraught and hard to console. As his dependence upon me continued during his hospital stay, I became exhausted from the many hours a day at his bedside or pushing him in a wheelchair. One evening, as I prepared to leave for home, Fred said, "I think you have a date." The poor man not only had to be left alone, but was worried about how I spent the time I was away from him!

We watched Fred suffer as nobly as any man could, while on a feeding tube and nothing to drink except a tiny sponge soaked in water. He had returned to intensive care twice, contracted pneumonia several times, until he was finally informed that "your chance of ever eating again is zero." All this after several attempts to give him soft food, many sessions in physical therapy, and finally the pronunciation that his condition was terminal.

Fred was admitted to a wonderful hospice home on July 19, where his ability to speak dwindled, and the only entertainment he could appreciate was music on a CD player. Again, he never complained, and died with dignity on August 9.

In our case, the "long goodbye" of Alzheimer's was shortened by physical illness, which is actually a blessing for both the patient and the caregiver. Therefore, I conclude this period of my life with a farewell to Fred:

ALL I HAVE LEFT TO DO
I don't have to worry about you any more;
All that I have left to do is miss you.
No more will I visit you in many rooms and wards as you suffer,
Praying you'd recover,
Knowing you could never be the same.
You couldn't have a lifestyle of the quality we crave.
Your mind was getting weaker as your body slowly gave.
Valiantly you struggled, but finally succumbed;
And now all I have left to do is miss you.

We hope you have enjoyed reading "Chronicle of a Caregiver." Thank you, Sarah Goodwin, for sharing your story. -ARF