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Some have proposed that caregivers to GCA patients suffer as much as the patients do at times. I’ve never had this attitude, perhaps because I couldn’t empathize as much as some caregivers. While my anxiety and stress could not match Pearl’s they were on-going mental emotions that flourished throughout her illness.
Our roles in life reversed the morning she woke up with pain all over. She was an obvious victim of something and needed instant help. In times like that she - being the mother and experienced caregiver to other family members - would be the one I would turn to for direction and support. Her immediate need shook me out of my laid-back retirement mentality. She needed relief that I couldn’t give her and I was desperate to determine what I could possibly do to help her. A helplessness I hadn’t felt before came over me. I chastised my negligence in our not having found an internist yet. In earlier inquiries we were put off by a three-month wait for an appointment. Had we made an appointment upon relocating she would have had someone to call upon.
For each preceding symptom – the jaw claudication and shedding of foot skin due to a betadyne allergic reaction – we had doctors to converse with. I resorted to the yellow pages and found a family practice physician nearby who could see her that day. This stroke of good luck would not prove beneficial to Pearl. He failed to recognize her GCA symptoms, and it deterred us from seeking other medical opinions. This was an occasion when we should have gone to the hospital ER – I fail to understand why we didn’t.
Pearl was in constant severe pain for the two months between waking with pain all over and three days after prednisone therapy started. I checked the internet. A symptom of pain all over isn’t very specific. Her doctor talked of fibromyalgia, rheumatoid arthritis, neuritis, neuralgia, gout – the list didn’t include GCA or PMR so I didn’t find helpful information there. Two clues would have given me direction for further internet inquiry had I been more attentive: her alkaline phosphatase was highly elevated in a blood test a month before diagnosis, and she lost vision in one eye temporarily twice within two weeks of diagnosis. A better caregiver would have sought a second opinion within that painful two-month period.
Caregiver/advocate is an important function for a GCA patient. The person can assist by: scheduling and preparing questions for doctors’ visits; taking notes and ensuring discussions with the doctor are thorough; seeking information from libraries, bookstores and internet; first aid; and maintaining records of medical data and reports. I was able to devote full-time effort in Pearl’s behalf – this help may not be available to some patients but hopefully they will be able to find a part-time advocate as a minimum.
In her last several years she was debilitated due to GCA or secondary effects to the extent that she couldn’t contribute to house chores. Self care was accomplished except for hair care which our daughter did for her several times a week. A wheeled chair was used for her transport in the last several months.
Quality of life is an important issue for GCA patients. Pearl’s would have been improved if she had been given the amount of prednisone needed for control of inflammation during her illness. Instead, the rheumatologist continually under-dosed her because of potentially harmful secondary effects. As a result she was in almost a constant state of anxiety and pain. She had feelings of well-being during periods of control but she should have had these feelings most of the time.
Another caregiver shared these thoughts with me. We don’t know how long GCA will run its course, or whether the patient will die from GCA or from a secondary illness brought on by a weakened immune system. Therefore it is prudent to help the patient be comfortable and live as normally as possible during their illness.