Today I am forcing myself to write. I’ve been so overly consumed by my fathers condition that my inspiration and motivation for anything else are lost. The following are the consuming thoughts, the worry and the stress I can’t get rid of.
Now that he is going to begin home dialysis his level of care is going to increase significantly. They are still in the learning process of home dialysis so currently they have to go once a week to a training for the next month. The plan, according to my father and his girlfriend, is once the machine is set up in their room he will be hooked up at night and basically receive the treatment while he sleeps. Sounds easy right? Except this equipment and his body must be kept sterile during this process. This requires numerous steps that includes ensuring all fans and air conditioning is off. If these steps are not adhered to properly he is at risk of infection which could lead to death. Upon hearing this warning my father said to me, “Eh, I could see us being really good for a little while, but like when you tell the dentist you are going to floss everyday, eventually you begin to slack.” Alarmed I said, “This isn’t something you have the luxury of slacking on. Loosing your teeth isn’t going to cause you to die, this could! Why would you opt to do this at home if you know you won’t maintain it properly.” At this point he got irritated at me and snapped, “We will.” Oooook, it would seem I took his little threat about slacking off more seriously than he wanted.
While still in the hospital recovering from having the port implanted (please read about that here) he decides to share that his girlfriend plans to leave for a couple of weeks next month. It’s her mother’s 100th birthday. On a good day he is able to sponge bathe himself and maneuver around his home with the assistance of the stair lift, a walker and strategically placed furniture. This is a man who falls, even when he thinks he is stronger, and ends up in emergency. They live in a two-story home and he refuses to get Life Alert because he can carry his phone. I asked him if he’s going to have an in home nurse come out and stay with him during that time. “I don’t know” he responds. “What do you mean you don’t know? You have good days and bad days, who is going to bathe and feed you when she is gone?” “I don’t feel comfortable with some stranger.” “Dad, do you expect me or (my boyfriend) to come bathe and feed you while she is gone??” At this point I’m freaked. I’m a mental health worker not a medical worker and even if I was, this is my father. Perhaps for some this will seem extremely selfish and wrong, but I cannot bathe my father knowing full well he can afford proper professional care. There are aspects of the father, daughter relationship that I don’t want to lose with him, and if he tries to put me in the roll of care provider e.g. nurse, I cannot do it.
At this point he said he will ask his sister to help him. They talk on the phone often and he feels close enough to her to ask. She has not seen him in years. I’m hoping she comes out and sees what I see. That she recognizes a man in denial about the severity of his condition and tells him he needs to get a higher level of care. And perhaps sell the big ass house and move to a one story. If she feels comfortable playing nurse then good for her, but in my mind that is not a fair request of him either. She is not a medical professional and even if she were she is family.
I know that some people believe that it is the family’s “job” to take care of each other in these types of situations. I’ve had many clients give up careers to care for ailing family members and I’ve seen the hell their lives became as a result. The depression, guilt, the loss of the relationship, e.g. child to parent, the resentment, and anger that develops is heart breaking. I will not let this happen with my father. With my depression, I know that no matter how much I love him, I would resent and hate my life more than I already do. So I will continue to remind him of one of the first things he told me when he found out he had Polymyositis, “I will never have false pride and become a burden to you. I will ensure I have proper care when things get worse.” Things are worse dad…