I blew it. BIG TIME!! As a caregiver I've tried to not burden Mr. B with some of the frustrations that I go through in this journey. That's the main reason that I started this blog. I wanted a place to vent without it impacting Mr. B.
But today I messed up. I was venting to Mr. B that I was sure there was talk behind our backs about how much of an imposition it was for people to drive us to his appointments. This week has been especially hard because he ha needed to go every day to the treatment center for IV hydration. Like a bolt of lightening, Mr. B jumped out of his chair and as fast as his walker would take him, made a bee line to our bedroom. I immediately knew that he was upset when he said that he needed to be alone. I started to follow him and he slammed the bedroom door closed. By the time I got to the door I could hear him sobbing loudly. I felt TERRIBLE for causing him this kind of emotional pain. What kind of an idiot am I? I held him and told him that I was sorry at least a dozen times. I said that I would work on my fear of driving so that I could take us to the treatment center and then we wouldn't have to rely on others for that. How could I be so insensitive?
There is so much to learn on this journey of being a caregiver. So much of it is uncharted ground with no road map to guide me. I know that I will be travelling blindly at times and will make mistakes. I just hope that by sharing my mistakes I will help other caregivers to not make the same ones.
Until you've experienced a serious illness in your family, you don't realize how expensive medical supplies are. While Mr. B was still in the hospital we had a visit from the occupational therapist. She gave us a detailed list of the medical items that would be required before we could bring Mr. B home. These items were needed for safety and comfort reasons. And came to a total of over $1,000. With only one income in our family, it was an added burden that I didn't need to worry about right now. But thankfully we have credit cards that still have available credit room. I'm not sure what I would have done otherwise. There were so many items that had to be purchased that were not really medical in nature but were still needed. For example, I had to purchase two sets of sheets for the hospital bed, some extra pajamas for Mr. B, a pair of slippers, a handheld shower attachment and a truckload of over the counter pharmacy supplies.
Our home has been transformed. I had to totally rearrange the furniture in our bedroom to allow for a hospital bed to be moved in. I had to make sure that all areas in our home had enough clearance to allow for Mr. B to steer a walker around without hitting something. Right now I've crowded excess items into my office and the den and I've made these areas off limits to Mr. B. He's not very impressed with that but I don't want to take a chance that he will get hung up on something and take a bad fall. In the next few weeks I will need to make some hard decisions about getting rid of some of these things.
And through this all I realized something that totally scared me. Mr. B is now an invalid. I cried buckets when I said the word to myself. Now I need to constantly check that he has taken his medications, laxatives, stool softeners, etc. I have to help him shower and sometimes to get dressed. He is taking very strong pain killers and I'm sure that is what is causing his mind to be fuzzy. In the past two weeks his pain medications have tripled. Which is another reason that I won't leave him alone if I need to do an errand. The physical therapist at the hospital didn't even want him to walk without someone close by. She felt that he was just too shaky when he was standing to be trusted alone.
Our days are very quiet. Mr. B spends a lot of time sleeping. Whether that is because he is depressed or just tired or possibly a bit of both, I'm not really sure. Each day I see a little more of him slipping away. He didn't even watch the final game of the NBA basketball championship. He would never have missed it previously.
I try to spend as much time with him as possible. I wait until he goes for a nap or goes to bed for the night before I go on the computer. At least I can usually get him to talk a bit if I stay in the room with him. Otherwise our home is far too quiet. He usually only speaks if I talk to him first. The only time I actually see him become animated is when he receives a phone call. Unfortunately they don't come often enough. :-(
On Tuesday we have an appointment with Mr. B's oncologist. We will find out if the plan is to resume the chemo treatments. If they are not resumed than Mr. B will need to go on dialysis. And yet if they are resumed, I fear that Mr. B will not be strong enough to handle the risk of future infections.
Please check out the Medical Journal page for a new post. Thanks. :-)
Today as I was with Mr. B at the hospital, I looked out side and saw the many people that were hurrying down the street. People with purposes that took them to other places. People with every day things to do. I looked out and wanted to shout at them. "How can you go on as if nothing is happening? Can't you see that I'm dying inside? Can't you see that I'm hurting and in such emotional pain that I want to crawl into my bed and never get out?" But the sad truth is that their lives are going on. The world is going on while my world is falling apart. I try so hard to be strong each day while I am at the hospital. I need to do as much as I can to encourage him. Even if it's just to help him to the bathroom or get him some ice water to drink. Today was a bad day for Mr. B. He was in more pain then the day before and wouldn't ask for more pain killers even though I encouraged him to. It's almost like he wants to suffer right now and it is tearing my heart out. He gets very emotional when I leave each night. I know that he's scared and angry and depressed. I wish that I could take this cancer from him and give it to myself. It would be easier for me if I had it instead of seeing him suffer.
I'm not sure when he will be released from the hospital but it likely won't be until we have a meeting with Homecare. I've asked them to provide a hospital bed and a wheelchair for Mr. B to make his life better when he comes home. His bones are becoming very fragile and brittle. Part of his pain right now is because two of his ribs were fractured when the paramedics moved him from our couch to the stretcher. Plus his back pain is getting worse too. I worry that I won't be able to control his pain at home. I worry that one of his bones will fracture just by walking. I worry that I will loose him far quicker than I ever imagined I would loose him. The worrying just never seems to end.
I am so angry at this cancer. Why did Mr. B have to get such an aggressive form of MM? There are so many other patients that have lived years and years with this cancer. I'm finding it hard to go to some of my favorite support websites. I see people who are doing so well with this cancer and it's hard not to be resentful. I should be happy for them but right now I can't share in their joy.
But life does go on. The circle of life will be completed. It is out of our
The past week has been very difficult. It started with a trip to the hospital with Mr. B last Sunday night and ended with him still in the hospital because there was infection in his blood. They feel that the pneumonia that hospitalized him a few weeks ago never really cleared up.
I've found it very hard to function emotionally through all of this. I come home from the hospital and almost always start crying as soon as I walk through the door. Then I have to make a few phone calls and I cry more. I find myself performing very much like a robot, acting on auto pilot for many day to day tasks. My mind isn't focused at all and I find myself doing silly things because my mind is a million miles away.
And what is it that consumes my thoughts? Of course, Mr. B is the source of it all. I worry about him constantly. I worry about him even while he's in the hospital. There have been many times in the past week where I had to be his advocate because they seem to forget how much pain he is in due to the condition of his bones. While he was being moved to the stretcher by the paramedics, two of his ribs were fractured at the front of his chest. It took the hospital until Friday to confirm that they were the cause of his chest pain. And the doctor assigned to him does not believe that this type of fracture could be caused just by moving him from the couch to the stretcher.
Then came the reaction to the pain medication that they started him on. He was in bad shape with mood changes, agitation, hallucinations, vision changes and depression. Finally on Saturday, I talked the doctor on call to stop that drug and go back to the morphine. He is also on a Fentanyl patch to control the pain which they doubled to a higher dose. Poor Mr. B has been taking a very bad trip down Alice's rabbit hole (those were his words).
Each night when I go to bed I take the phone to the bedroom just in case there is a call from the hospital. It's not that I want to think the worst but I have seen people with pneumonia take a turn for the worse in a matter of hours. Until I know that he is feeling better, I will still worry.
I find that during this difficult time I don't do some of the things that I normally do. For example, I don't turn on the tv. In our house, the tv is usually on if we are at home creating background noise. But when Mr. B is not here, I don't even want to watch tv so it stays silent.
Also in the past week, three people that I know of have passed away from Multiple Myeloma. I did not know two of them personally, but followed their blogs. They've both lived with this cancer for years and were an inspiration to many people. The third person we had met only one time. She was a member of our local MM support group and passed away a few days before Mr. B was hospitalized. The day we met her was very emotional as she shared with the group that the doctors said there was nothing more that they could do for her. The next Monday we saw her at the cancer treatment center. Even though she was barely able to walk, she was still making a valiant attempt to continue her treatments. I admire her so much for not giving up. And so it was a big wake up call for me just how cruel this cancer is. Mr. B has been deteriorating very rapidly. So far after 3 full cycles of chemo, his protein numbers are not responding to treatment. The longer it takes to respond, the more damage is done to his bones and we see the results with the bone fractures. I asked his cancer nurse how long it usually takes for the MM patients to respond to the chemo treatments and her answer was that they usually responded after one cycle of chemo. A cycle of chemo is 4 treatments, once a week or one month in total.
I called this post, Depression for a reason. I've never been a person that gave in to depression, or at least not for very long. But this past week, I found that this was exactly where I was headed. Or maybe I was just having a big pity party thinking about what my life would be like once the cancer takes Mr. B. So I wasn't even sure what emotion I was feeling. But today I got up and decided to spend some time on my balcony and wait for the hummingbird to come to my feeder. And as always, patience pays off and one flew up to the feeder. I think that one small step of looking for something else to focus on, helped turn my whole day around. When I came home from the hospital tonight, I was much calmer. I know that there will be more challenges in the future in regards to this cancer but for now I have overcome this roadblock and will focus on today and let tomorrow worry about itself.