from caregiving back to wife, friend and individual…
a little background…
Dave had just completed an unplanned treatment with our “new” doctor there. What I mean by unplanned is that our regular doctor had left the clinic and we were assigned a new doctor. I was already getting my defenses up and arms fully loaded before we even got to Little Rock. I have trouble with doctors as a rule. Its improved over the years, but I am very sensitive to ego and condescension. I don’t hold doctors in high regard “just because” they are doctors. Anyway, its not about ME, so I was working to keep myself calm and optimistic that it was going to be fine. It turned out great. The new doc was trying to ascertain Dave’s history and where he started and where he was now. So he gently asked if we would mind doing some additional scans so he could see how Dave was doing now compared to his arrival some 9 months earlier. He was so kind about it and Dave readily agreed. We met with him the next day and the scans told an amazing story of how incredibly well Dave was doing. In fact it was over the top terrific. I was watching Dave, watch the doctor, reviewing the reports on the computer and relaying to Dave just how amazing he was doing. I noticed that both Dave and I released something HUGE at that moment. It was if we had both been holding our breath for a very, very long time and didn’t even realize it until we breathed. Dave was emotional and of course then I was as well.
We were on what was deemed a “lite” version of a particular protocol available to the low risk myeloma patients. Our new doctor asked if we would mind doing the full version instead. This meant that we would need to do one more treatment before we did the second transplant. We had a lot of questions about this proposal based on our previous understanding. In the end Dave consented to do this “extra” chemotherapy treatment and come back in the fall of ’09 to do his second transplant. On the one had I was wanting them to leave him be, he was doing well. On the other hand the Doctor and Dave wanted to go ahead and do the full version since he was tolerating it well. I was comfortable with it being Dave’s choice.
Dave breezed through this round as if it never happened. Neither of us said a word, we just kept cautiously waiting to see if the shoe would drop. It never did. We were amazed. We would go home early. It was quite extraordinary really.
Now to the awkward moment…
On our discharge appointment we were meeting with one of the nurses to go over the usual list of exit questions that are extensive. Dave and I both kept answering. Dave was getting very annoyed and I was trying to step back but then he would look to me for the answers or confirmation. The tension began to rise and the nurse was so lovely. She turned and faced us both, smiled, and said,
“This is very common. The caregiver has been working full tilt for a long time taking care of everything. The patient is doing better and is beginning to become more proactive in their own care. Its a difficult transition and I just want you to know, I understand the dilemma. You two are doing just fine. Its a good place to be.”
She hit the nail on the head. Dave had been depending on me and expecting me to handle everything for such a long time that I wasn’t prepared for him to take his “hat” back, so to speak. Then when I would expect him to take it back, he wouldn’t and would get frustrated with me. Balls would get dropped, prescriptions needed to be scrambled for, things like that. It took us a while to find a new arrangement.
I felt lost and he felt abandoned. We talked about it and the bottom line was that he needed and wanted to take more responsibility for his own care and would communicate to me when he needed some assistance. I needed to let go and know that he wouldn’t always do the things the way I would and that its OK. I would help, but he was in charge more and more. I was getting a demotion and I couldn’t be happier that it had come to this.
We have a workable new system now and he’s doing a terrific job. I’m still struggling to find my footing transitioning back into what was once my life. What I had planned to do BC (before cancer) and what I feel like doing now is not the same. Its getting better and I’m enjoying visiting my children and friends I have missed. Slowly but surely a sense of normalcy is returning and it feels fabulous! The wife and friend part is in tact and the individual part is a work in progress but headed in the right direction.
I hope that some of you who may find yourself in this situation will recognize the awkward “transitioning” and be kind to yourselves should you feel frustrated. Talk about it. Work a new plan. Its OK. Re-work it whenever the opportunity presents itself.