I greatly dislike the term “caregiver”. I am not sure why it irritates me so. Maybe because I don’t feel like I am giving care. Or perhaps because it sounds like one person is helpless and needs the other’s help. Just please don’t refer to me as such as it does bother me.
Being the partner of someone who is ill is definitely not without challenges. One of the biggest ones that I face is when to push and when to back off. This normally relates to Dave going to work. For the last couple of months, I have not pushed – maybe an occasionally nudge every once in a while. As I mentioned previously, being in the clinical trial made it almost impossible for Dave to gain any kind of momentum at work. Now he is way out of the routine. In my estimation this seemed like a good week to make an effort to go as Dave has been off treatment for three weeks and has not started the new trial. Yesterday from work I sent Dave a text that said something like “How’s it going?” This was my way of gently nudging him to get going. Eventually he did go in, after the building had emptied for the day, and spent a few hours catching up on email and paperwork. This morning as I was leaving to spend time with my brother and his family I said “What’s your plan for today?” Another gentle nudge to encourage him to get on with the day. When I returned home several hours later, he was still here.
I have reached out to Dave’s family and friends over the last few years when I have encountered a situation like this in which I could use some backing. Usually, it doesn’t really help. I think sometimes friends don’t want to get involved because they feel it might compromise their relationship with Dave, or maybe the don’t agree with what I am trying to do, or it could be that they can’t fully understand because Dave seems/sounds great. Dave’s family has been very supportive. His parents have gone with us to quite a few appointments to be another set of listening ears and advisors. His sister was with him on his toughest treatment day to date. And his brother has been generous beyond words with his time and the experiences and things he has done for Dave. (I think he would be embarrassed if I listed them here.) But even his family can’t do much to assist in these situations. Dave tells them what he wants them to know or what he thinks they can hear. He doesn’t want to put undue stress on anyone. I hear him on the phone quickly change the subject if it lingers too long on cancer talk. Over time I have come to realize that I am the one who has the tough conversations with him.
When I walked in the door today to find Dave still home, I took a deep breath and asked him these questions –
What is your big picture plan?
Are you waiting for someone to make the decision about your job for you? Lack of a decision is also a choice.
Are you planning to sit at home and wait for your tumors to grow?
Are you trying to avoid seeing people at work?
Dave’s reasons for not going to work are generally fatigue or pain. He says he has trouble sleeping at night. I told him that the reason I think he has trouble sleeping at night is because he is inactive and sleeping during the day. That it concerns me greatly that he has checked out of a major part of his life. That I don’t think he is trying to get up and get going. That changing his routine might help him sleep better and feel more energized during the day.
These conversations are tough. Dave gets irritated with me and feels that I don’t understand. He feels that he is trying. I wonder myself what my motivation is for pushing him to go to work. At the moment it is not financial thanks to sick leave and short term disability. Is it my selfish need for things around here to be somewhat normal? Do I worry that he is giving up? Am I concerned that his decision to work will be taken out his hands? Probably a combination of all.
He says he will try to go to work tomorrow. I won’t be home to nudge and prod so we will see. I am hopeful that our discussion made a difference.