Lynn’s Step-Dad has only days or maybe hours to live. Just one month ago, he fell and had a lot of pain afterwards that did not get better. He went to the doctor about the fall and when an x-ray was done to check for broken bones, it showed cancer. The CT that followed showed tumors on his spine, in his lungs and 17 separate tumors in his brain. The oncologist recommended radiation as a pain prevention option but his Step-Dad did not tolerate it very well. Then he developed thrust (fungus overgrowth in the mouth) which was treated with antifungal medication leading to an imbalance of intestinal flora causing the development of C-diff (excessive diarrhea and abdominal pain). He now can’t eat or drink and the loss of fluids and electrolytes along with the side effects of radiation and the progression of the disease is causing his body to shut down.
Lynn has had a very difficult time with what’s been going on. His Mom remarried when Lynn was a young adult and his Step-Dad has been a part of his life for over thirty years; longer than his own Dad was alive. His biological Dad died of complications of MS in his forties (back in the day when MS treatment was very limited and almost non-existent for primary progressive MS). Going through the rapid decline in his Step-Dad’s health has brought back a lot of baggage from his Dad’s health decline and eventual death. It has also brought up a lot of the frustrations and angry he tries to keep in check related to his own physical limitations. I also suspect it brings to mind fears he has for his on future.
His Step-Dad is blind from macular degeneration. When he initially was discharged from the hospital, he was admitted to a skilled nursing facility while he underwent radiation therapy. We went to visit him there and I could tell it really bothered Lynn. While I think the facility tried to provide his Step-Dad with good care, they were not always mindful of the fact that he was blind. They would leave his bedside table just out of reach, move things around, come in and start to do something without telling him they were there or what they were doing. I think Lynn related to how helpless that must have made his Step-Dad feel. He was very angry after that visit. We came up with some ideas to help his Step-Dad to have more control of his environment and I went back the next day to make those changes (i.e., a small bag with several pockets that I Velcroed to the bed rail so he could reach his belongings; putting rough Velcro on the volume buttons of his TV remote and the smooth ones on the buttons that took the channels up or down.)
Giving him some control of his environment seemed to make Lynn feel somewhat better about him being there but he still struggled with the fact that his Step-Dad was lying helplessly in bed without anyone to see to his needs. Lynn understood first-hand how it is to need something within reach but unable to get it yourself. Therefore, he advocated with his Mom to get his Step-Dad a companion for afternoons when he wasn’t in therapy and was pretty much alone. She agreed he needed help but since she is ill herself and totally overwhelmed by what’s happening she couldn’t seem to get it done. Therefore, since I’m Lynn’s proxy and the only one in the family with any medical knowledge, I became the unofficial medical decision maker. I had to research potential options for companion care, get references, decide when he needed it and what type of care would be best, then explain it to his Mom, and reach out to set up the service with the selected company… but then I had to step-back and have his Mom do the actual contract and service agreement. There have been many such “consultative” services I’ve needed to do for them during this process and it’s very frustrating for me because I have no power to actually implement any of the recommendations or decisions. I can go so far but not all the way and trying to help someone with decisions that are complex to implement leads to a lot of stress and fatigue. There are so many privacy protection laws in the way to just getting things done that it causes significant anxiety for family members who are already overwhelmed with the medical condition of their loved one. What I learned from this is that all families need a power of attorney designation that can include more than one person so that when the one designated as power of attorney cannot cope; someone else can step in legally to move things along.
Another source of emotional pain has been the fact that Lynn can’t go see his Step-Dad. He was able to go once when his Step-Dad was in skilled care, but now that he’s in the hospital, he dares not go due to the rampant flu in the area and the C-diff diarrhea his Step-Dad is experiencing. If he were healthy, he might be able to take the necessary precautions to enter the room; however, his immunity system is unreliable and if he got C-diff or the flu, it could have devastating implications for him. He has had to accept the fact that he won’t be able to formally say “good-bye” now that his time left is so short but he’s at least comforted in knowing that on that last visit, it was a good visit and he was able to talk to him with the idea in mind that he might not see him again (he knew at that visit that his Step-Dad only had 6 months life expectancy).
Lynn’s greatest frustration has been that he cannot help. He wants so much to make things better for his Mom. He knows that my work load is already heavy in caring for him, in supporting my Mom who is staying with us while she gets chemotherapy for newly diagnosed ovarian cancer, and in managing my formal work load for my employer. He has said repeatedly, “What good am I? I’m just a burden and no help to anyone.” He is really struggling with his inability to do anything substantial in helping with the situation. Therefore, I try to keep in mind his need to “do something” and give him assignments that need doing that he can handle. This helps him to feel that he is contributing and helping me out as well as his Mom.
Last night, Lynn talked about when his Dad died. He spoke about the last time he saw him and the fact that he came to that last visit expecting him to die shortly, though he hung on a few more days. He spoke to wanting to run away from what was happening to his Dad and how sudden his condition changed for the worst. I think it’s impossible not to relive the times of loss previously when someone else close to you is dying. If the past has been buried and becomes emotional baggage, it makes it even more difficult if it gets drug back up at a time like this. Lynn is not one to talk about feelings; he keeps a lot bottled up so it has been challenging this week to get him to talk about what he’s feeling and helping him to let out some of that pain held inside. Holding on to it is also physically affecting him; he’s more tired than usual and sleeping excessively. I’ll have to watch him for clinical depression if he’s not able to recover after this is over.
It’s difficult to have a family member dying. The unknown of what is going to happen and when; how to navigate the insurance and Medicare red tape; understanding the medical information; and so much more make this a very difficult time for any of the family but for Lynn, he’s also dealing with his powerlessness. He’s feeling a lot of pain and helplessness that I can’t take away. I try to help but there are just some things that can’t be skipped over. For now, he will just have to “go through to get through” and I’ll try to help him pick up the pieces afterwards.
Does your employer provide workplace accommodations due to your MS?