CHRONICLE OF A CAREGIVER
or From Supercilious to Sympathetic
by Sarah Goodwin
Posted 3 March 2003
Installment 4: This is the fourth of several installments 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
By that time, I had to make some resolutions as to how to handle similar situations
and make decisions. The latter had to be in consistency with our status quo. I had
reached the point where I was becoming used to, but not comfortable with it. However,
one really has no choice.
Getting both Fred and myself ready for an outing was a very slow process that really
tried my patience. There was no way to hurry him, to church or anywhere else. Once,
we just barely made it to Signal Hills where the bus waited to take us to Plainfield
for lunch and a play. As there were only single seats left, Fred had to sit next
to a man who chattered all the way, and as my husband's conversational skills had
deteriorated greatly, he bore the brunt of a one-way discourse. I was privileged
to sit next to a lady with whom I could converse. The next time we had a trip coming
up, Fred informed me that we had better get there early!
One September day, I decided that our mattress-turning was long overdue, but Fred
said that we needed a new mattressone that didn't need turning. It's a job
that he obviously did not care for, of which there were quite a few. I wrote, "...
If I could only be more sympathetic to the fact that tasks I take for granted are
not only difficult for him to perform physically, but to comprehend how to do them."
Although coping with these incidents began to take on a routine modus operandi it
still took a toll on my outlook and energy. As my sister was also caring for a husband
with dementia, we compared notes (by phone) and vowed that "we would not be defeated."
It was October of 2001, and I accepted a date for a daytime bridge foursome, which
was no easy accomplishment. It was fun, but when I got home, Fred said, "I thought
you were going to stay all night." I knew enough not to comment and quickly changed
the subject. A few days later I went shopping with Ginny, and Fred didn't seem to
mind. He was actually nice when I returned, and as he liked Ginny a lot, it may
have depended upon whom I was with. He had been watching a sentimental movie that
I finished with him, and we both cried afterward. It was a rare sweet moment that
The next Sunday, while out to breakfast with our friends, who repeatedly heard him
complain about his eggs, Fred declared that they were perfect! He said, "Take a
picture." He always had a good sense of humor, and it occasionally showed up. Later
that day, as I spoke to him, he turned his head in the wrong direction to listen
to me. That was an example of something new and different that occurred, and it
would always take me by surprise. A friend whose husband had been similarly afflicted
said that I should not let Fred see my reaction, but try to "get inside his head"
and think about what was happening. I needed to do that more often. In order to
do so, I made the following new resolutions:
While I had to be tuned in to my husband's feelings and needs, he was not required
or even able to understand mine. He would ask me to do something for himwhich
I did not consider urgentjust when I would sit down to relax or begin a project
of my own. He did not mean to be demanding, but I would have a hard time stifling
a sigh before I reluctantly put down my work and tended to him. On some Sundays
I would go to our condo's Hobby Room and paint while Fred watched football. That
would be okay, as he was occupied. However, when he finished, he would come down
to get me, and I just put everything away and went with him for a walk or a drive.
Also on Sundays, Fred called his sons and sister on the phone, as they all live
in other states. On one occasion, I answered Penny's call and chatted with her for
a while. When she asked me about her brother's condition, I left the room to talk.
Once when I did that, he gave me a growling look that ticked me off, and I "lost
it" and jammed the phone into his hand. As our place is small, I had to walk the
hall in order to vent my anger. Of course, I couldn't scream, as Lillian does in
her garage, which was frustrating. Fred felt that I had more phone calls than he
didwhich was trueand Penny was one of his callers that I had no right
to talk to. That evening I could not stand to be near him in the den and went to
the bedroom and watched a movie by myself. This was a real show of anger and a source
of irritation to Fred, as he wanted me by his side at all times. After he went to
bed, I e-mailed Penny and used that method of correspondence with her afterward,
The outcome of it all was that Fred, on another such occasion, told me that when
I took the phone out of the room to talk to my son, he felt like he was "not a member
of the household." Poor guy!
On a routine checkup that fall, Dr. Kennedy noticed that Fred had a hand tremor,
and after some drawing tests, said he suspected that my husband may not have AD
but Parkinson's. We didn't know how to feel about thatwhether or not it was
good news. When we saw Dr. Ackerman a while later, he insisted that Fred did not
have Parkinson's and, yes, it was Alzheimer's. As a source of information, I attended
a seminar on caregiving sponsored by our local senior federation and learned that
a person could suffer from both the diseases simultaneously. Fred, however, did
not admit to having Alzheimer's disease, and he seemed a bit relieved to know that
he did not have Parkinson's but only a "memory problem," and I could see no reason
to explain it any differently to him.
In order for me to get out, my best friend Laura's husband, Lee, would take Fred
to lunch occasionally. This type of thing was a greater work of mercy than he could
realize. Also, Fred still managed to sing in our church's funeral choir. He had
quit the regular choir because he couldn't read the words and music of a new hymn
at the same time. The funeral hymns were usually old standard favorites that Fred
knew by heart. He had a beautiful bass voice which was his pride and joy. That and
his thick, white hair were sources of many compliments, which friends were kind
enough to extend often. Unfortunately, Fred's voice became weaker, and he would
ask me why that was happening. That was one of the heartbreaking changes that he
couldn't understand, and I could not explain.
His sense of humor, however, would spring up when I least expected it. We enjoyed
one drink for Happy Hour, which would not begin before 5:00. One evening I suggested
that Fred start mixing the drinks at 10 to five because by the time he had them
ready it would be Happy Hour. He said, as he struggled to get up, "By the time I
get out of the CHAIR, it will be Happy Hour!" We had a great laugh over that, and
it surprised me that he could laugh about himself.
Fred also had a repertoire of jokes that he would slip into conversations with the
preface, "That reminds me of a story." People would hush as he held the floor, and
that was a source of pleasure for Fred. As his disease progressed, however, he would
begin a story and forget how to proceed. I sometimes prompted, but it became too
embarrassing for him as time went on.
He began to lose his bearings while we were out in the car. One morning we agreed
to get our flu shots at the clinic, and as I parked the car, Fred reached for his
bag lunch. That was for his stay at the Red Cross afterward...
Next installment to be posted soon. -ARF