Dear Tanya,
You are going through so much, and it's so hard when others are depending upon you. It makes you feel as if you're the only one with information, the only one who is brave enough to ask questions of doctors, the only one who will confront the situation with courage and reality.
I am in the same situation. My father, 87, has stage IV tongue cancer, and the doctors have given him a poor prognosis. He acts as if this will all go away quickly and easily. He has not included my brother in his life, nor does he call him anymore. There was never a split between them, my father just doesn't call him. This is very hard on my brother, as he had a stroke in October, and talking about our father is way too stressful, and it raises his blood pressure dangerously. So here I am. In addition, my father has a new woman friend, but she can't and doesn't cook other than maybe opening a can of soup or pouring a bowl of cereal. She messed up macaroni and cheese, which is pretty unbelievable to me. She doesn't know the right things for him to eat.
She must be hanging around for other reasons, I don't know. My father is 6' tall, and now weighs 141. He asked his handyman to punch two more holes in his belts, so I know he must be very, very thin. He lives in Arizona and I live in Michigan, so I receive information from the person he hired to cook and clean. Now he won't let her (C.) cook anymore because he doesn't want to pay. She is extremely reasonable, $-wise, but my father insists she not cook. So he's been getting along on very little food, skipping meals, or eating out. I have asked C. to buy fresh fruits and vegetables. She has. They sit in the refrigerator so long C. eventually has to throw them out. It's a discouraging situation.
And, long distance, he asks me what to do. Will I be able to eat when I have the PEG tube? It was placed yesterday. He drank a Boost and had a negative but normal reaction. He had six teeth pulled and the partials didn't fit so he now has to wait until next week. Meantime, he can only have liquids. C. is doing a wonderful job (he has allowed her to start cooking again) of finding things he can tolerate. I know this will get worse when treatment starts.
He forgets appointments. He forgot his first dental appointment. He forgot to go have his blood drawn prior to having the PEG tube placed. A nurse friend had to be called to draw that blood with phone authorization from the doctor. He loses his paperwork. He forgets to pay bills.
And his new friend looks to me. She seems to know nothing. I worry a lot because it will be up to her to keep the PEG tube and abdominal area scrupulously clean. She seems quite inept. I worry because she doesn't seem on top of changes in him from day to day.
I sit at my computer and research for hours. I call him to tell him what I have learned -- a lot from this forum. He says, "Yes, mmm-hmmmm." Does nothing.
Treatment won't start until he's completely healed from the dental work. He is a very difficult person, and I am tired of him yelling and screaming at me on the phone when I am only trying to help. I have stopped calling him, for the most part, as I have epilepsy, and that kind of stress could send me right back into seizures. It's been two years since the last ones, and I want to keep that going.
Sometimes I feel like giving up trying to help. My emotions get so tangled. But I don't, of course. I try to keep in mind that it's the cancer talking. Although.....he has pretty much always been like this. The cancer just exacerbates it.
I, too, am twice your age, Tanya, but I hope you will glean bits and pieces from my post that might be helpful. When I took care of my mom during a six-year illness prior to her death, it was pure pleasure, even when I was dog-tired, because she always expressed how she appreciated everything I did, and how much she loved me. It's so different with my father. He is so cranky.
So....I see that I have written too much about myself. I guess I had to vent, too. This IS a great place to do that.
In the meantime, do things for yourself. You have a life to live, a very busy one at that, and it is so extremely important that you take time for YOU. Attend to your responsibilities, but after that, let yourself have an hour for a little mindless TV. Take walks. Take a nap. Something that helped me immensely was writing about it. That seemed to get all the feelings out of me and onto paper. Then you could throw that paper away. I kept it all and have it still, but do whatever works for you. I live near the beach, and I used to go down and walk, pick up stones, name those stones, and then toss them into the lake. Some of the "names" of those stones were WORRY, FATIGUE, FRUSTRATION, ANXIETY, SADNESS. You could do this on a walk, too. I know it sounds a little silly, but for me it seemed to lighten the load.
When my mom was ill I was teaching full-time, we had an exchange student from Switzerland (she and our daughter didn't particularly get along), and crisis after crisis would occur medically. I was out of bed in the middle of the night to run over to her apartment, I took her blood pressure several times a day, I called 911, I talked to doctors on the phone at all hours of the day and night, I took her to all her doctor appointments, drove her to ER when necessary, learned how to cook for a diabetic (which they discovered she was after two "silent" heart attacks). And I would do it all over again and more if given the chance. How I miss her. She died 12 years ago.
It is a heavy load you are carrying, Tanya. You don't need to be told that. But to take care of yourself is so important that I cannot stress it enough. Do it for yourself, but also remember that you will not be strong enough or sometimes even awake enough to do the caring if you do not treat yourself well.
Get a friend and do something for an afternoon. If you can't spare an afternoon, start to think in terms of hours. Read a book. Here's another strange sort of suggestion, but it worked so well for me that I will pass it on to you. First, I am in no way an artist. OK. I got 25 pounds of clay, and I used to close my eyes, and put a gob of clay in my hands. Working that clay was enormously healing to me. At one point I watched what I was doing, and I made 14 faces, all in some version of pain. I attached them one to the other, and called it "Panel of Pain." I kept it for a long time. Looking at it reminded me of everything I had bottled up. But making it was the best.
Get a good counselor. This was a lifesaver for me. At one point when my mom spent the summer at University of Michigan Hospital and I was living with my in-laws 50 minutes away, my counselor would call me at 8:00 in the morning for a telephone hour just so I could talk, cry, be upset or whatever. And that dear man never charged me for those calls. It was one of the best gifts.
This is way too long. Please let me know how you're doing, as I care a lot. Oh, one last thing, Tanya. Let friends do things for you, whether it's cooking meals, cleaning your house, mowing your lawn, taking care of your children, whatever. They want to know what to do. Go ahead and tell them. It will be so helpful.
Friends in this,
Maggie