Mr. B was not feeling very well last Sunday and Monday. When the palliative care nurse came for her Tuesday visit I told her that I was concerned about his condition. She evaluated him and decided that it was a good idea to start daily visits. He was also officially registered into the palliative care program and all chemo treatments were stopped. It was a hard decision to make but since Mr. B had refused dialysis, the decision to continue with the chemo treatments was made for him by his oncologist. He said that it was important to take dialysis to keep the kidneys functioning while the treatments were on going. But since the current treatment with Revlimid was not working to keep his Lamda Free Light Chains down, his kidneys were starting to fail. The only other treatment option available was to give a much higher dose of cyclophosphamide, the drug that made Mr. B so sick last summer. Unfortunately, Dr. A could not start that treatment unless Mr. B started dialysis. Truthfully, I'm not sure that Mr. B was strong enough to have that treatment or dialysis either.
That same day, Tuesday, the palliative care doctor visited Mr. B for the first time. He evaluated all of his medications and determined which ones could be stopped and which ones needed to be adjusted. I was given the after hours number to call for a nurse if I required one. Tuesday night had been difficult for me. Mr. B needed some cleaning up after a toilet mishap and I had a very hard time getting him in the bathtub. He was just too weak to lift his leg over the side of the tub. It scared me so the next morning I let the palliative care nurse know. She quickly ordered a commode for Mr. B to use at home. Later in the afternoon, Mr. B started to become much weaker. He could no longer get up to walk so I had to use either the wheelchair or the commode to move him around our condo. It was extremely hard to support his weight when he would get up from his bed to use the commode. I decided it was time to call the after hours palliative care nurse. I thought she would come to see him but instead she passed the call over to the night nurse as this nurse was on her way to another patient's residence and then her shift was over. It took another hour before the night nurse called me. She asked me if everything was ok and if Mr. B was now resting. I said I would check on him and found that he had somehow managed to get to the bathroom but had not been able to get there in time and had an accident on the floor and on his clothes. I said to the nurse that I didn't know how he managed to get to the bathroom on his own and all she said was that she would let me go since I had to tend to Mr. B. I think I was so shocked that she didn't even offer to come to evaluate him and I was so scared. I barely sleep at all that night and the 3 hours of sleep that I did get was with one eye open.
The next day when the palliative care nurse came, I told her everything and said that I just couldn't handle Mr. B when he was this weak. She decided that he should go to the hospital and said it would likely take a day or two to get him a bed. She left and within an hour called me back to say that they had found him a bed. I was so relieved. The interesting thing was once he was in the palliative care unit the staff quickly determined that he required two people to take him to the bathroom. Here I was trying to do it all by myself. No wonder I was so upset!
Mr. B is still there but resting comfortably. They were able to get his pain under control and he graduated to having just one staff member help him to the bathroom on Sunday. He still is too weak to walk by himself so stays in bed other than for his washroom breaks. Today he was having some breathing problems which scared me. The doctor told him that he just needs to call for a nurse and she will bring a medication to help him breath.
The staff in the palliative care unit are amazing! Mr. B never waits more than a few minutes when he presses his call button. They stop in his room to check on him and find out if he needs anything. Sometimes they bring a treat for him like ice cream. Mr. B isn't eating or drinking very much right now so they want to do whatever they can to make him happy.
And how am I doing? I cry lots. The first night was the worst when I came home. Walking down the hallway of our condo building, I realized that Mr. B would never walk that hallway again. Once I was in our condo, I saw all of his things and I knew he would never see them again. I think I started grieving his death even though he had not died yet. I finally called a friend because I just couldn't stop crying. :-(
I find that I'm often reduced to tears. When I'm with Mr. B at the hospital I'm ok because he is still with me. But once I go home and I'm faced with the silence of being alone, I quickly find the tears start. I'm not ready to lose him. We've had such a short time since his diagnosis. It's only been 14 months! And Mr. B has suffered for almost every day of it. Now I just want him to be released from the pain and suffering. I want him to enter the Gates of Heaven rejoicing that his healing is finally here and even though he didn't see his healing while on earth, he will receive it in Heaven. My heart breaks a little more when I think about the time when we will say our final goodbyes. I don't want a new title - widow. :-(