Written by Dana Martin
~In honour of Family Caregiver Month, we asked our community to share their personal stories about caregiving—the joys, the challenges, insights gained—to share with other caregivers and our larger communities. Here is one such submission…
My wife, Connie, was diagnosed with breast cancer in May of 2013. She had a mastectomy, chemotherapy and radiation therapy over the next year or so. She recovered and returned to work, taking drugs to prevent reoccurrence. In February of 2017, she was diagnosed with metastatic bone cancer. Over the past three years she has had treatments and approximately 22 CT scans and 5 bone scans. She was on oral chemotherapy (Capecitabine) doing 55 three-week cycles doing blood work in between. It was determined that the Capecitabine was no longer effective so the decision was made to switch to hormone therapy, which meant more bloodwork and ECG’s. She is continuing on the hormone therapy today and her cancer is under control best as can be expected. She has also recently been diagnosed with Alzheimer’s at an advanced stage.
You can imagine she has spent a lot of time at the hospital and at the doctor’s office. Since her first diagnoses in 2013, I accompanied her to every chemo round, radiation round , CT Scan, Bone scan, Bloodwork, ECG and doctor appointment. It was on one of these appointments (September 3rd Bone scan), when I was told I was not allowed to accompany her to the bone scan (because of COVID-19). I said she needs to be accompanied and was told she would be escorted and I would have to wait outside. The first part of the bone scan is an injection which takes about 5 minutes. After 30 minutes, I was getting pretty anxious because she had not been escorted out yet so I went to the front to find out what was happening and I saw her heading towards the front door, by herself, unaccompanied. When I asked my wife what had happened, she said they took her to Nuclear Medicine and left and that she had been wandering around looking for the way out for the last half an hour. When we came back for the second part, the actual scan, I was allowed to accompany her to nuclear medicine.
On February 3rd, we were out walking our dogs and Connie tripped and fell, hitting her knee and her head on the cement walkway. I took her to emergency; I felt that because of the pain in her knee and the fact she has bone cancer I wanted to make sure she was checked out. I was not allowed to stay with her in emergency. When we were checking in, I was told that I don’t have an emergency contact number, so I gave my son’s number. I then left Connie in the care of the nurse who told me she would be well looked after and I went home. I called 4 hours later to find out that the she was ready to be discharged and they were trying to phone but had no answer. It turns out they were calling my son and not me. Because Connie gets easily confused, when they told her that they were trying to contact her son to come and pick her up she did not know to say call me instead. Later, I picked her up. I was pretty upset, so I did not talk to the hospital staff at that time. I do not blame them for the confusion; it can happen. Also, I truly am grateful for how well she was cared for.
What this event showed to me was that, in fact, Connie needs someone who knows what is happening all the time. As a family caregiver I have learned a lot of things about cancer and dementia. One of the main things is the way dementia patients can present as quite capable and coherent, however, when confronted with a problem they will not know what to do.
Since Covid-19 started a year ago, I have seen many changes to procedures in the hospital. Every time I have to take Connie to the hospital I worry about if I will be allowed to accompany her. This causes stress that I could quite honestly do without. I believe that a simple solution would be to issue an “essential support person” pass to the caregiver of a dementia patient. That way the staff at the hospital would be able to recognize the role the support person is playing in the care of the patient.
I want to say Connie has received the best care and concern for all her appointments and procedures at the hospital and I am very grateful for that. As a family caregiver, I have been told by many health professionals and friends that it is important to look after my health as well. I don’t think that patient care should come before Covid prevention and quite honestly, I would rather turn back then leave my wife alone to fend for herself in a hospital again.