Hospice (Photo credit: ellenmac11)
Years ago I had to deal with my parents and their medical issues. Maybe that was a blessing in disguise. It blind-sided me. I didn’t have time to think. I just reacted and did what I had to. There was no question about what to do. I just did. I didn’t have to question too much how it was going to affect my life or my “family”. I was newly married and I just told my husband at the time that my parents were my responsibility because I was an only child and I loved them and I was going to take care of them. He loved them, too. The decision was simple.
While the decisions I made were cut and dry, they weren’t easy and they were not without consequences. I left my husband for almost a year in order to take care of my parents. He visited about once a month because we lived about 6 hours away. His family talked about me and said what I was doing was wrong. I guess I was supposed to turn my back on my family because of their disapproval. My husband and I grew apart and eventually divorced a couple of years after everybody died. I wish he’d done it while I was still in my hometown, but he said it wouldn’t have looked right. I suppose we had to do things to make it look right…whatever.
As we get older, though, we have to face things such as aging parents. As I stated, I have dealt with the deaths of my parents. It wasn’t easy. I was lucky, though, to have a wonderful group of doctors working with me. I was young and they helped me make decisions that are hard to make even when you have a lot of life experience. I was young and stupid. I needed guidance and the people who I would normally turn to for that guidance were the once who were suffering.
My father had lung cancer. He was advised to have surgery to see if we could get the cancer out. When they opened him up they realized that it was too far. He was stage 3 out of 4 and the cancer had wound itself around the vessels of his heart. They couldn’t cut it out without killing him. Instead, they closed him up. He had a scar that reached from under his left shoulder-blade and around his side and it came up and around his chest. It was big and painful. They told me that it was inoperable and that he had a year to live at the most in a small room at the hospital. I was dazed. I had lost my mother just 5 months before. I was just so scared and confused and angry.
After the initial shock wore off there were decisions to be made. I felt alone. Daddy felt alone. We were alone and yet we were together. And we didn’t want to be. We were both terrified and angry. He was about to lose his life and he was so angry and scared. I was losing my other parent and I didn’t know how to take care of him. We had a rocky relationship.
The first thing to do was get into the oncologist’s office and sit down and make plans. We did that. The plan was to try radiation and then see how that went before we tried anything else. Daddy was frail and weak. He might not be strong enough from chemo. It was easier to see how he reacted to radiation before subjecting him to chemo. The hematologist was wonderful. Instead of giving me his answering service’s number, he gave me his direct number. He saw how young I was and how scared both Daddy and I were. He was compassionate.
After months of trying different things, Daddy was too weak. The oncologist and hematologist consulted and felt they wouldn’t be able to do more. Quality of life was more of an issue at that point. Daddy deserved to be able to be at home and be where he loved. He deserved to have our dog, Dixie, sit next to him and watch over him. It was decided that we would use hospice care.
I read recently of someone I love speaking about using hospice care and not being in favor of it. She isn’t against it, but she isn’t ready for it now. Maybe some people use it as a cop-out. I didn’t use it as a cop-out. Taking care of someone who is dying is hard. It is trying. It is painful. When I was taking care of Daddy I was in the house with him every day for 24 hours. I got 3 hours a week to run errands and go to a therapy appointment so that I wouldn’t completely lose my shit. Three hours is not a lot of time to get grocery shopping done for a week, go to the pharmacy, get from one end of town to the other and back again. I had to do it. I had no help. My husband would come in for his rushed weekend trip once a month and his parents were trying to get him to visit them and I was begging him to help me. I needed time to just take care of things around the house. I couldn’t up and leave Daddy because if he walked around without me there, he could fall and hurt himself. I couldn’t let him take his medication on his own because he was on such high doses of morphine that he could easily overdose. I had to hide the car keys so he wouldn’t try to drive. Once the cancer reaches their brains, they’re no longer themselves. They’re like kids. Except with a little one, you can say no and move them from harm’s way. With an adult it is not so easy. You do your best and they might become agitated and angry. They might scream and curse and hit you. They might forget who you are. They might forget what is going on. And you don’t. You have to keep putting on that happy face.
Hospice care is a blessing. They offer help through aides coming to assist in tasks that are awkward. My father and I both felt awkward about bathing. When it got to the point where he could no longer bathe himself without assistance, he didn’t want to ask me. I was his child!
The hospice people are the ones who brought in sitters so that I could go get groceries weekly. If they didn’t, I don’t know what I would have done. It was so hard. I got three hours a week. I flew like a bat out of hell every week to get my errands run. They made it possible. We had a set time weekly.
When I needed help convincing him that driving when you are on high levels of morphine was not a good idea, I had help. The hospice people supported Daddy and me. I was so grateful that they were at the house the day I found out my grandmother died. I had lost so many people and then I got a phone call that my grandmother had died unexpectedly. I was stunned and shell-shocked. I walked into the room and immediately received comfort. I wasn’t alone. People don’t realize that things like this happen during trying times and it makes you feel so pulled and torn. I wanted to go to my grandmother’s funeral. I couldn’t get a hospice sitter because they only worked in shifts of 3 hours. I needed about 5 hours. I was having to drive to a city that was about 90 minutes away and do the funeral and drive right back. I ended up paying a relative $100 (which was a lot of money in 1997) to sit with Daddy so I could go to my grandmother’s funeral.
The day Daddy died I called my hospice nurse at her home and told her. I didn’t have to go through an answering service like most places do. It was before the office opened. It was close to time for her to leave for work. She told me she was on her way and to wait in the living room. She would take care of everything. And she did. I was 26.
If you use hospice, you aren’t lazy. You could be like me. You could be in need of support and have limited people helping. I know a few hospice workers and they are the sweetest people. I don’t know how they do what they do.
Making decisions about dealing with parents as they age isn’t easy. Maybe in a way I did get off easy. My choices really weren’t mine. Back then the decisions were just reaction to the moment and doing the best I could with the situation thrown at me. Today I am so much more retrospective. I would worry myself to death over it. I still think back to then and wonder about decisions. I can’t undo things. I did what I thought was right at the time. I did it out of love and necessity. And I would give anything for a moment with them.
While my writing isn’t Pulitzer quality, it is therapeutic for me and some people do enjoy it. While my art isn’t on the same level as Van Gogh, I did a painting inspired by his “Irises”. Below is my painting. I hope you enjoy.
