I just returned yesterday from a week away from Mr. B. This was the first time I've been away from him since he was diagnosed with Multiple Myeloma. It wasn't really a vacation though. I wish it had been. People kept saying to me that I should have a good time and to enjoy some respite time. The truth was that I was dreading the time away for many reasons. My brother passed away on February 1 and he lived quite a distance away from me. He had been hospitalized for about a month but I was really hoping that he would manage to overcome the infections and he would return to his apartment. Unfortunately the last week he was in the hospital he took a turn for the worse and passed away. So since he lived in the same apartment that he had shared with our mother who passed away in 2005, I had to fly to Vancouver one last time to sort through papers and photos. The executor was looking after the disposing of the furniture and painting of the apartment so my time was just spend dealing with the papers and photos. I was very thankful for that. But staying in the apartment alone was very hard for me. It was hard to be there and not have my brother with me. He and I were very much alike. We understood each other. I loved him very much and will really miss him. My last night there was the hardest though. My parents moved out to Vancouver in 1981. The apartment building was brand new and they were the first ones to live in this apartment. Then a few years after my father passed away, my brother moved out to Vancouver to be with my mother. So I guess I felt like this was my home too. And now I had to say goodbye to it for the last time. I cried a lot the last night I was there and I cried a lot the next morning when I left it for the last time.
When I was away, even though I missed Mr. B terribly, I found that there were moments where I actually forgot that he was sick. I even had a few moments were I enjoyed the company of some of my West Coast friends. I actually started to feel normal again. BIG MISTAKE! I was lulled into a false sense of security and I realized that as soon as I opened the door to our condo.
Mr. B stood up with great difficulty (due to pain) and made one beeline straight to me. He hugged me and started to sob. I asked him what was wrong and he just said that he was very tired and felt like he had been treated like a piece of meat. It took some prodding but from what I could determine, he was upset about things that had happened while I was gone. Usually I look after being the go between when it comes to his doctor appointments or ordering his prescriptions. I had left Mr. B in the competent hands of his sister who is a retired nurse. Or at least I thought she was competent. I found out from his other sister on the way home from the airport that his temporary caregiver had taken a "hands off" approach with Mr. B and let him manage things himself. I was so upset. I had explained to her before I left that his mind was foggy at times from his medications and she would need to monitor that he was taking his medications correctly and on time. As I quizzed him later that evening, I also found out that she had not monitored his dose of Kayexalate and he had taken too much. I always pre measure that out for him because the nurses have cautioned us on how dangerous an over dose can be. So off we went for some more blood tests today to check on Mr. B's potassium level.
I should give some more background information. Mr. B had two bad falls in mid January. They happened two days in a row and required ambulance trips to the hospital. The second fall resulted in a new fracture in his back. These falls have caused a great deal more pain for Mr. B. But before I left, he seemed to be managing his pain better. Today though was not a good day so I was very happy that we had an appointment already scheduled with his pain doctor. I also asked the doctor if he could prescribe an anti depressant for Mr. B. I'm not one who usually supports taking pills for depression but I think that Mr. B is just struggling too much with this whole process of having cancer. We do see a counselor monthly but lately we haven't been able to see him because of how Mr. B has been feeling.
I would really love it if someone could break the connection for me. There were times in the past year when I wanted to run away and not return. I get so tired sometimes both emotionally and physically from trying to manage my husband's care that I want to disappear into my own little world where he isn't sick anymore. Losing my brother really hit Mr. B hard too. We both cared very deeply for him. Plus it was a reminder that we don't know how much time left Mr. B has. It scares me that he might be doing worse than I think he is. Even though his protein numbers are coming down from the Revlimid, his over all health doesn't seem to be very good. Now the past few days he hasn't been eating very well. Or that might even have been going on the whole time I was away. Today at the doctor he was weighed and was down almost 7 pounds since he was weighed about 3 weeks ago. His head is drooping even more than when I left him. The bones in his spine have deteriorated to the point where he cannot even hold his head up. Try kissing your husband goodnight when he can't even lift his head to do a simple thing like that. My heart breaks for him every day.
Yet, I know I will be ok. Having this week away gave me a taste of what life will be like once Mr. B is gone. The first few days were very hard but I did find myself starting to adjust to being alone. I know my life will never be the same and I can't dwell on the "what ifs". My desire is that I can make every moment that Mr. B has left on this earth to be joyous ones. I asked him if he would prefer his sister's caregiver method over mine. And he quickly said "NO". I may be accused of fussing over him too much but I would rather know I had done as much as I could for Mr. B than to feel guilty that I didn't do enough.