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Published on 1 April 2003

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Living with dementia: chronicle of a caregiver

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In October of 1998, Fred had been experiencing what we learned were transient ischaemic attacks, two incidents of his leg going numb. He also told his internist that his memory was not very good. He was referred to a neurologist, who administered a few simple tests that I believe are standard. One is to draw a clockface showing 12:00. Fred drew a circle and the numbers one to three but could go no further. He was given three words that he was to repeat later, and he remembered two. He was to spell a word backwards. He did so after much deliberation. Then the consultant left the room for a few minutes and returned with a video cassette that he dropped in my lap. It was entitled “TRIAD”, meaning an alliance among clinicians, patients and caregivers of Alzheimer’s disease. Absolutely stunned, I said, “Do you mean this is what he has?” and the doctor simply replied, “Yes.”

On our drive home, not one word was said. I was in a state of shock, and I can only imagine what was going on in Fred’s mind. Later he called to tell his son Greg the news, saying that the doctor was crazy. Three days later we watched the tape, but since then Fred never referred to the diagnosis, and was either in denial, just wouldn’t discuss it or actually had forgotten! The last theory is just as plausible as the
others.

From supercilious to sympathetic
In the beginning, I would argue with Fred when he said that he had never seen a movie we were watching: “Yes, you did”. “No, I didn’t. You must have seen it when I was out.” This began to occur frequently with TV shows, and later with incidents such as meeting someone or eating at a certain restaurant. When he was clumsy with trying to help me cut up vegetables for a salad, I would privately click my tongue in disgust and decide to keep him away from food preparation. This was my period of superciliousness, and I prayed every Sunday at Mass that I would try to get over it.

Some of the things that were difficult for him could be explained by his poor eyesight. However, the ophthalmologist who diagnosed macular degeneration in the left eye kept saying he was “legal to drive”. I finally wrote to him, explaining the situation, because I had experienced some scary near-accidents while Fred was driving. He consulted with the neurologist and then advised Fred not to drive. This was, of course, very traumatic for my husband, who could not understand why other people with one good eye were still allowed to drive.

Each day was a surprise – would it be a good or a bad one? That’s the way it goes. By Sunday morning, I would pray in church that God would get me through another week without a major argument. I no longer felt supercilious when I realised that Fred’s mood swings were not his fault. One must continually be aware that “it is the disease!”

While ours was a second marriage, I did not regret having married Fred and believed at the time that, having lost one husband suddenly, the odds were that I would be caring for the second one through a long illness, like cancer. Fortunately, Alzheimer’s disease carries with it no physical pain, but it does cause extreme frustration, like not being able to cut up one’s food, tie a tie or zip a zipper. The pain is emotional and mental for both patient and caregiver.

At his son Doug’s home in Wyoming, Fred managed to play UNO, to the edification of all. Doug’s mother-in-law Ethel was there during this visit, and as her husband had suffered from Alzheimer’s, she was helpful. My friend Pat, whose husband had died from Parkinson’s disease, was another confidante. After I complained on the phone to her and said I felt guilty about it, Pat said, “Well, you don’t have to LIKE it.” That was the best comment I had ever received.

Mental lapses and physical ailments
At that point, I noted that Fred was having considerably more trouble eating, as I had to cut food items larger in order that he could spear them. He also spilled drinks while pouring, and this was not only caused by his eyesight, but his hand was beginning to shake. I was happy to accommodate these difficulties, and feeling more and more sympathetic.

By August, Fred was going to bed about 10:00. I stayed up later, which he didn’t like but had to get used to. He understood TV programmes less and less, and chided me even more about my driving.

Fred’s confusion was now becoming noticeable to other family members and friends who formerly would say to me, “He seems just fine!” Fred began to insist that I said something the way he heard it. For example, when I referred to a man as a comedian, Fred said, “He’s not a Canadian.” Rather than argue, I thought a minute and then agreed with him. It really didn’t matter! Sometimes I was not so understanding and had become became irritated at
his criticism. At other times, I privately had a laugh over it.

On the Saturday after Christmas, I noticed Fred slowly shuffling along with a stooped posture and vacant expression, looking very much like a person with Alzheimer’s. He was becoming more confused and forgetful, but there were episodes of lucidity, which seemed incongruous.

On Sunday, 20 January 2002, I observed four new examples of his slipping:

  • He could not figure out how to place his razor in its holder to recharge it.
  • He could not understand how to reverse his new belt.
  • He put his sock on with the heel sideways.
  • He fell asleep in his study in the evening and woke up insisting it was the next morning.

A new and disturbing problem arose in January. Fred was getting food stuck in his oesophagus. At least that is what I thought, as he was not choking but complaining of pain in his chest. I began to cut things smaller so he wouldn’t have trouble digesting. He thought it was a hiatal hernia. He called his primary care physician about his problem. She said
we should take our cruise, but make an appointment for right after his return. 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 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.

As Fred’s mental lapses increased, they were accompanied by physical ailments, both real and imagined. He had a scalp condition called seborrhoea, 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 the doctor had found nothing wrong except possibly arthritis. He had foot problems that didn’t heal well.

Alzheimer’s pushed to the sidelines
As suggested before the cruise, Dr Cook arranged an oesophagram, endoscopy and consultation with an oesophagus surgeon, who, for privacy, I will call Dr Kincaid. A malignant tumour was discovered that would require either chemo/radiotherapy or possibly surgery. Further tests included an ultrasound and PET scan, which took place in the first week in April.

Surgery was performed on April 16, resulting in the removal of his entire oesophagus 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.

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!

Fred was admitted to a wonderful hospice home on 19 July, 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 9 August.

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.

This article is an edited excerpt from Chronicle of a caregiver by Sarah Goodwin First published by the Alzheimer Research Forum Names have been fictionalised to protect confidentiality

Alzheimer Research Forum
The Alzheimer Research Forum is an independent nonprofit
organisation that was founded in 1996 to create an online scientific community dedicated to developing treatments and
preventions for Alzheimer’s disease
W:www.alzforum.org



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