CHRONICLE OF A CAREGIVER
or From Supercilious to Sympathetic
by Sarah Goodwin
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 allexcept Fred. I could not give in to him that
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 notthat
I couldn't remember how to cook things that I used to make all the time. It was
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 restroomand
I should have realized that he wouldn't find itwhen 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
problemsas we knew how to counteract thatI worried that his table manners
would cause me embarrassment. Fortunately, our table companionsjust one couplewere
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
After the cruisewhich I was very happy to have madelife 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
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
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