Mom (Joyce Sawyer) died on February 26, 2016, in her sleep … just as she had always hoped. During her last few months, she was under the capable care of the local hospice team. These people are special, indeed. To see a person at their most vulnerable, with empathy, is something our family does not take for granted.
Several years ago, Mom was a hospice volunteer. I suppose she had in the back of her mind that one day she might need the same service she was providing to those in need. You see, she was diagnosed with Type 1 diabetes (insulin dependent) at the age of 10, and by the time of her death, had lived a precarious tight rope walk for 72 years.
While living in Portland, Oregon, Mom addressed a group hoping to become volunteers with the hospice organization. This was probably written in the early 2000s, before they moved to a retirement community, and finally to their last home in California. Following are her speaking notes on
Are You Ready to be a Hospice Volunteer?
I want you to know that you are special people. A volunteer doesn’t get paid money.
I have been doing respite care for 10 years. Before volunteering, I taught school, moved 22 times with my husband in the Air Force, and raised 6 children. * (*I’m not sure where she is getting the number 6. She may be including the foster child they took in for a short time in Montana.) Our 9-year-old son died of cancer. At that time, there was no hospice in our area, so I’m glad to be part of it now.
I have helped care for many families. Most of the patients died of cancer. I was surprised to find that most did not die in their own home, but in the home of a daughter or son.
I hope to tell you some things that will prepare you for your first volunteer job here, and make you more comfortable. I know, at first, I was very apprehensive. I still am, when I go to a new place.
You will meet some very interesting people. I know I have. These people all had a life before they were dying. Some homes are extremely beautiful, and some are just two rooms. It is the people we care about.
My first man had been the head of the YMCA in India after WWII and his wife had been a state senator. Another man had been in the Marines in fierce fighting in the Russel Js.* (*Not sure what was intended here.) and he almost starved to death on a death march. Anytime I was there, we fought the war over again. The family was glad to have me come … because they were tired of WWII!
One woman’s husband was a college professor. I read one of the books he had written. Another was an organist, and one man was a real cowboy. A younger woman was a police officer. The last couple I visited had traveled all over the world.
Before you go to a home, you will be given 3 pieces of paper, 2 white and 1 pink. One explains about the patient and how to get to the home. Sometimes the hardest part is finding the house and a place to park. It is helpful if an outstanding feature is mentioned. Once I was given a street name and discovered that street didn’t have a sign.
Under the patient summary, I found some abbreviations and terms I wasn’t familiar with. You can look these up or ask about them. I remember wondering what “HOH” was. Turns out it meant “hard of hearing.”
Look carefully at the volunteer instructions. This is the time to say if you want to do the things on the list. I can’t drive after dark, so I can’t help in the evening. I’m allergic to smoke, so I don’t go where people smoke. Maybe you are allergic to animals. Be sure and let Anne* (*obviously her hospice director) know ahead of time.
Some things you might be asked to do are: shopping, light housework, meal preparation, and companionship while the caregiver is gone. I used to say “I don’t do windows,” but when I was asked to do a picture window before company was coming, I did do it.
There is also the nurse’s name and number. If you find you need help, you can call that or the number of the hospice office. The number should be on the phone in the home.* (*Hospice placed vivid colored labels with their triage number, strategically placed throughout the home, but definitely on the phone.)
You will be asked to sign the paper. You always have the choice not to go.
Before I go to a home, I write down the odometer reading and the time I start. I also take the directions to the house. I put a small magazine in my purse. Sometimes, the housework is done and the patient is asleep. I also wear my name tag.
When I first get to a home, I talk with the caregiver and the client. Then I find out where the phone is and the bathroom, and what things need to be done while the caregiver is gone. I ask “how may I be of help?” Where I am helping now, the man likes to be read to. One chapter usually puts him to sleep. “The Greatest Generation.” Sometimes I don’t ask enough questions, and sometimes I’m too helpful!
[At one place] I saw sheet music scattered on the floor around the piano, so I picked it up and put it on the piano bench. It turns out that was the wrong thing to do. She had it in the order she wanted to play it.
One time, a caregiver told me an air mattress was coming sometime in the afternoon. I didn’t realize we had to get my lady out of bed and help her sit in a chair for ½ hour while that mattress filled and then get her back into bed. The fitted sheet would no longer fit, it just went “boing”! So I used a top sheet and we got her back into bed.
Here are some other things I have learned;
- Be flexible. I have cleaned houses, done laundry, fixed lunch, done dishes, gone shopping, changed beds, fed people, played games, and watched TV. There really isn’t much on in the daytime I have discovered. I was going to take one man for a walk, but by the time he was dressed and had his shoes on, he was too tired to go. At one place, my woman was asleep but I had a sick child to care for. Once, I played dominoes most of the afternoon and she won every game!
- It helps to have a sense of humor. Once when I walked in the door, the man said, “You’ve been canceled.” Well, no one had told me, but he was right. I did his dishes anyway. I asked one man if he’d like some lunch and he said, “Do you want me to throw up all over you?” I said, “No, I wouldn’t like that at all,” so I didn’t fix him any lunch. (*This following story was crossed out, maybe for length or because she was embarrassed to share it, but I’m including it here. … Another man vomited and his teeth also went into the pail and his wife flushed the whole thing down the toilet. Their son came and retrieved them. The man called them his “turd choppers.”)
- Don’t take everything personally. Sometimes people who are ill and miserable say what they feel and it doesn’t have anything at all to do with you as a person. One woman didn’t want a “babysitter.” I told her I was a Ladies Home Companion. We talked for 3 hours and she showed me her house and toys her husband made for children. One man did NOT want his caregiver to leave for the day. He told me to “go away,” “go home.” Of course, I couldn’t do that. I stayed across the room, but he decided to lock himself in the bathroom. About the time I was going to call for help, he came out. I told the family and they removed the lock from that door.
- Be creative. I was supposed to keep one man from being lonely and bored while his family was at work, so we did all sorts of things, like read books, jig saw puzzles, and sing songs. Every time I went there he said, “Who are you and why are you here?” Of course, he did remember that he had asked for a sweet young then, and they had sent me.
- Make the best of the situation. You may not think there is a best, but do what you can. At one place, the woman said “Don’t look at my purse!” when I first walked in the door. She had it under her bed. Well, you know what your eyes do when someone says “don’t look.” She’s the one who got to playing with the electric buttons on her bed and she made it into a slide and ended up scrunched up at the bottom. The caregiver and I moved her with the draw sheet.
- It works to let the person do as much as he can for as long as he can and to help with the decisions for as long as possible. I do not force people to eat. Sometimes food tastes bad. that is the patient’s choice. It may be the only thing they are in charge of. One woman wanted a milk shake but couldn’t [swallow].
- We need to accept people as they are and try not to be judgmental. We aren’t expected to change people or fix every situation. Their lifestyle may not be your lifestyle. I had to watch one woman who insisted on smoking, even though she was on oxygen. I told her she would blow us all up!
- Sometimes you don’t have to do anything … you just have to be there. The caregiver appreciates being able to get away for a few hours, knowing you are in charge. Or maybe she wants a nap or a bath.
When I get back home, I write the mileage and hours on the white sheet and the things I helped with on the pink sheet.
When a person dies, I send a card with a personal note. I do grieve for these people and their families, but it makes a difference knowing ahead of time that the person will die and the suffering will be over.
Questions? Remember, you are special people!