Before my mom passed away, I had the honour of spending a diffucult yet wonderful and memorable ten days with her. I am still processing everything I thought, saw, and experienced during that time. One of those events is a visit paid to my family by a very lovely and kind palliative care doctor. Up to this point, I have been fortunate enough not to have had very much interaction with the health care system. However, during the time I spent at home with my mom, I got a small glimpse into her relationship with the health care system, both good and bad. I think that this particular visit was probably one of the best experiences she has had with the system. This doctor provided her not only with medical care and attention, but with the emotional support that one needs as they prepare to end their life on this earth. The doctor gave my mom some advice that I know I will remember for a long time to come. Here’s what he said:
1. You are not a burden until they say you are.
For whatever reason, my mom felt like she was a burden on us while she was sick. No matter how much we told her that we wanted to take care of her, she just kept repeating it. She even mentioned it to the doctor when he came to see her. I loved what he said in response. It was so powerful for an external party to tell her that she was not the one who could decide whether she was a burden on us: we were.
2. You cannot deny them the righ to take care of you.
To follow up with the above piece of advice, the doctor also asked my mom if we were a burden on her while we were growing up, or when we got would get sick. She answered “Never! It was a joy to take care of them!”. He then very wisely said “well then, in the same way that you had that right to take care of them, you cannot take away their right to take care of you”. I had never thought of caring for someone as a right, but I really liked the way he put it. It was a privilege to take care of her. One that I will always remember. I’m glad that was not taken away from me.
3. Even though the definition of your quality of life will change, you can still have quality of life.
This one was particularly special. It’s true. When one is sick, everything changes. Answers to questions like “how are you?” or “how is your mom doing” start to become very relative. The answer “good” has a very different meaning than it does coming from someone else. In the same way, how one defines good quality of life must also change. The doctor said that even if one could only lie down with their eyes closed on a bed, they could still have quality of life simply by having a close relative by their side.
4. You are not the only one suffering. This cancer belongs to this entire family, and everyone is suffering; albeit very differenly than you are.
This was another good one. People do not realize that in the same way couple’s say “we’re pregnant”, families can be thought of saying “we have cancer”. Though the family physically does not have the illness just as the husband does not physically experience pregnancy, the other members of the family are still very much affected, and the doctor was right to point out that we were all suffering. During my mom’s illness, I sometimes felt guilty for being sad and making it about myself, when it was clearly about my mom. It was comforting and reassuring for someone to say that it was actually about all of us.
It was amazing how often these insights stayed with me during the days that followed. They motived me to care for my mom as best as I could, as well as to make her quality of life the best that it could have been. I’m grateful to this doctor who came into our lives at such a critical juncture.