How does a family who has already suffered the loss of a father and a brother to cancer take on the role of caregiver for a third time and this time for their sister, Judy, who had no partner or adult children to help share the responsibility of her care?
What follows describes how Barb Price and her sisters, Donna and Debbie, made a challenging caregiver situation into a cherished one. – Pat Taylor, CKN Caregiver Editor
by Barb Price
Our sister Judy was first diagnosed with melanoma in Oct 2004. She had the mole removed. The second diagnosis was in April 2006, again the mole was removed. In Aug 2008 she found a lump under her armpit. A biopsy was done, cancer was confirmed and surgery was required. It had spread to her lymph nodes. It was then that Judy entered chemo and radiation treatment. During this time she was able to continue to work. Then in February 2009 Judy was given the news that it was terminal. Thus began a journey that our family was once again faced with. We had already lost our brother and father to cancer. This time though, not only were we the patient’s siblings, but since Judy was not married, we three siblings decided that we wanted to be her full time caregivers.
In May 2009, Judy moved into one of my sisters’ homes, and that is where she remained until four days prior to her passing, when we moved her into hospice. As siblings, we made every effort to keep her spirits up, laugh about the good times and memories we shared in our family.
Finding the balance in being caregivers, while still working and managing our own families was definitely challenging at times. However, because there were three of us caring for her we managed to arrange our schedules well in advance so Judy would be well cared for. Her well being and care was always our main concern.
The caregiver in us provided Judy with the emotional comfort she needed along with administering her medicines, dealing with doctors, home care staff and the endless visitors. It really was all so new to us – but thankfully Judy’s doctor provided us with the information we needed about how to set up home care, and what care Judy was able to receive for no cost. (The medical benefits of living in B.C., Canada)
We made sure that Judy was able to get her rest – but she also wanted to see her friends. It was hardest on us I think. Once Judy’s guests left her room, they would come downstairs, see us and we would have to comfort them and each other. At times the pressures of these new chores/roles we were taking on would take a toll on us, but our closeness as siblings helped get us through.
It was hard watching Judy lose her zest for life. All along she never wanted to know “how long” she had left. So, we read articles on the Internet and spoke with medical professionals, to make us aware of what to expect over the course of her last few months. I wondered how caregivers do this job day in and day out -watching the patient’s health slowly deteriorate. It is so difficult.
Pen and paper were always kept nearby as we found it important to make as many notes as possible, so we could pass on information to other family members and friends. And when we noticed a change in Judy, this information was helpful when discussing with the health care professionals we dealt with. We also made a chart which was put by her bedside so we could record what and when we administered her various medications.
As caregivers, convincing our sister to eat was a challenge. It became daily meals of a small breakfast, soup for lunch and a few bites of something for dinner. We found that giving what she asked for or felt like eating that day was best for all of us. Trying to get her to eat, when she didn’t feel like it, wasn’t worth the disappointment for either of us. As much as we knew she didn’t want to disappoint us by pushing her food aside, it would become harder and harder to see her consume less calories as the days passed by.
Throughout Judy’s journey we siblings were always in agreement about treatment issues. However, our oldest sister, Debbie, thought we could care for her up until her death. But when Judy got really bad, we made the decision together to move her to hospice care – none of us had experienced having someone die at home, so we were nervous about this “end of life” care.
We did not talk with Judy about her dying. Not really. It was too hard a subject to broach with her. And, as I mentioned earlier, Judy did not want to know how long she had left.
At Judy’s passing our caregiver “job” came to an end. As siblings, we lost another member of our family, a beloved sister. It was a lot to process.
We found the first year after Judy died very hard for all of our family. However, our first Christmas without her we did choose to talk about her during our Christmas dinner – each of us remembering our past Christmas memories with her. I made each female in the family a bracelet from a necklace of hers. Of course we all cried…..
On the first year anniversary of her death, my sisters and I and our Mom went out for lunch and reminisced about our “beautiful Jude” – as we called her. Hey Jude (by the Beatles) was a favourite song of hers; our Mom loves to hear it! My sister Debbie bought us all a little music box that plays the song. We realized just how precious our time here is.
And in spite of the daily challenges, doubts and concerns we all shared as caregivers throughout Judy’s illness, we siblings agree that being able to care for her at home ourselves was a gift that we will cherish forever.
Barb Price works part time as a Risk Officer, and is a wife and mother. She continues to be close with her siblings Donna & Debbie and her mother Dorothy. She hopes sharing their experience as caregivers will give other siblings the opportunity to share their stories with CKN readers.