Roberta Record is a dedicated PCA who lives and works in the Augusta area. Her caregiving experience with elders began when she took over her mother’s business in the early 1990s, which provided in home support and care to elders in the community. “At that time,” Roberta says, “families would pay people in the neighborhood to help them. I don’t know how long the agencies have been in existence that are providing homecare, but this was word of mouth – who you could network with.”

Having worked for a homecare agency for six years, Roberta faces the challenges and triumphs of her day to day experiences with a creative and loving spirit. She is committed to lifelong learning, and is active in groups, reads, and creates collages and paintings that cover the walls of her modest, comfortable apartment. Some of her collages tell the stories of elders she has cared for and learned from in her time as a PCA. The wisdom Roberta has gained from her caregiving experience shines through when she tells a story about an elder that was dear to her. Roberta is a storyteller, whether she’s writing, making collages, or talking about her work, what she gives to those around her is colorful and rich.

Learning Something New All of the Time
In the latter part of 1995 one of my male friends was dealing with his mom who needed 24 hour care. She was 93, and she was only going to live thirteen days. A home health nurse had predicted when this woman was going to die. At the time I didn’t have any opinions about that, but I’ve developed them now. Nobody has the right to say how long somebody is going to live. In my job, elders will say to me, “Am I going to live or die?” And I say, “It’s up to you. If you don’t want to eat, then you can count on dying. If you want to live a little while longer, you need to drink your Ensure.”

So I was hired to go over and spend time with this woman, Lena*. I would come in with these little projects because I figured that I needed entertain myself from the boredom of doing nothing. Well, evidently she caught on, because she started having the time of her life. I would go over and bring her newspaper to her, tell her what was going on in the community. I started reading poetry to her. She was only supposed to live thirteen days. That thirteenth day things were kind of heavy. I walked into her house and I said, “She’s supposed to die today.” Well, it turns out I was with her from January to November. It was like maybe God wanted me to spend some time with her – more than thirteen days – before she passed on.

We would take imaginary trips. Lena used to be a teacher, and I have some background in teaching too. She would say, “I’m not going to teach today. I’m going on vacation.” And I’d say, “Where do you want to go?” She had this set of encyclopedias of different countries that we would read and explore together. I thought, “Wow I’m learning something new all of the time.”

I think that one thing that has made my work so rich is what I learn from being with these people – sometimes quite personally. One thing that I face all the time is tapping on my childhood. Lena was Lebanese and she told me that back in the thirties she went with a group of teachers over to the Middle East and saw Jerusalem, and it just blew me away. I thought, here I am trying to deal with my mother, who doesn’t even want me to get an education. And yet this 93 year old lady had taken a trip to the Middle East all by herself with a group of women.

At this time I had just purchased a used car and had payments for the first time. To be laid off with no income was terrifying. So I started looking for an agency, going for the interviews and sending out resumes. I was very cautious around employers. I was trying to make the system work for me because I had spent some years with my own company. I assumed it would be out of the question to ask for $10.00 and hour, which is what I had been making because the family in Monmouth was paying me privately. When I started working for the agency I’m with now, I went from making $10.00 an hour to $6.50, and I’m still not making $10.00 an hour. I think this is an important dilemma – if we’re going to make changes in the future of caregivers, we need to be sensitive about salaries.

There’s a transition happening from families taking care of elders to strangers taking care of elders. I experienced that when I started working for the agency. I was assigned cases. The worries for both myself and the consumers are: How are they going to treat me? Are my possessions going to be stolen? Is money going to be stolen? My elders and I build a relationship. The first day I’m there I say, “Did you enjoy the visit? Did you feel comfortable with me? If you don’t, then we can find another caregiver because this is important. We’re going to be spending a lot of time together.”

If it doesn’t feel comfortable I’ll let the agency know. They are very responsive to me because it’s good business. I hate to say the word business, but it is a business. Maybe three or four years ago it was required by the state to have PCA training, and now to work for an agency you have to have your certificate. But basically the stuff that I do is common sense, though it seems like I often have to allow other’s decisions to override mine. That is totally against my whole philosophy of life. To be a part of the decision process, to be taken seriously, is the value of a caregiver. And yet, I can understand why I have to always “run it by somebody.” If something goes wrong, there are plenty of people who will point the finger.

My values are safety first. I’ve seen people fall. I’ve been right in the room and seen them fall behind me. I had one lady that walked with a walker, and one time she went to bend down and momentarily she just froze. She was a stroke survivor and it scared the living daylights out of me that she would come out of that. I had no medical background to know what was happening to this woman. And there’s another side of me that’s saying, “Do I really want to know? Because taking on more responsibility is not going to affect my pay because this is a business.”

Breaking A Frozen Thought

It’s amazing how you can break a frozen thought. Like, some people will say, “I don’t like poetry.” I’m thinking of one lady that I went to in Wiscasset. She lived in a trailer. Now, I go from extremes in terms of economics. That is one of the most challenging experiences, to go from someone who has a savings of $400,000 to someone who’s living in a trailer who has nothing. In fact her daughter left her job as a cook in Rangeley to come down to Wiscasset and care for her father, who died of cancer. Her mother had nine strokes, was a diabetic. This daughter had left her income so she could live in a trailer and care for her mother. You know, there are so many kind, caring, gracious people that have a spiritual richness that a lot of wealthy people don’t have. I find that profound. On this day, the daughter was telling me that it took her six hours to feed her mother three meals. She would have to stroke her mother’s throat every time she gave her something to eat because the throat muscles were partly paralyzed.

I was only there for a day with them. Her daughter and I literally had to roll her in a secretarial chair into her little tiny bathroom that had the washer and dryer in it, and the two of us lowered her down into the bathtub that was padded with air pillows. I was to take forty-five minutes and pour warm water over her body. Well, I was having a difficult time doing it because she was so thin and stiff. And the muse was telling me, “Rigor mortis is setting in, but I’m alive. I’m alive.” So I thought, I’ve got to go out to my car. I happened to pack Robert Frost. I said, “I’m going to read you the poem, The Pasture, and if you don’t like that poem, I’m going to stop.” So after I read The Pasture I said, “You want me to read another one?” She said yes. So, sitting in the secretarial chair I poured water over her body as I read Robert Frost. Her eyes were closed; it was too much energy to keep her eyes open. And I would say, “Do you want to hear that again? That’s such a great poem.” And she would nod yes. I spent forty-five minutes reading Robert Frost to her. And then we very carefully lifted her up and wrapped her up and put her on the chair and rolled her back into her bedroom. I had to put lotion on her and I was not trained for that, not at all. It was very shocking.

I was supposed to be there once a week as a respite person. The following weekend I had these – I don’t know – intuitions, feelings. I just couldn’t get her out of my mind. I relived that visit over and over again. And the next day I called the office to let them know that I had been sick with the flu and I didn’t want to contaminate this woman. And the staff person said, “Oh, Roberta, didn’t you know? She passed away this weekend.” Well, I thought to myself, “In the short time I spent with her, I was walking her into heaven.”

No Set Formula
You know, there are 30,000 families in Maine who have an Alzheimer’s person. We are a retirement state. People talk about wanting to retire to Maine and I say, “Be sure to bring your own caregiver. We don’t have enough here.” I’m joking, but I’m serious. If we’re going to be promoting our state as a retirement state we’re going to have to deal with dementia and Alzheimer’s. It takes a lot of energy, it’s hard to always be positive. So many of my elders are able to see right through phoniness. I don’t have to worry about that, because one of my top values is authenticity. Being yourself, being honest, being open, not hiding anything – these are so important. I make it an effort to have a rich, warm relationship with my elders. I guess I’m a Miss Fixit, so I’m always trying to fix the discomfort with the elders. If they’re not satisfied I tend to say, “What can I do to fix it?” But then there are days when I go in and I say, “I’m sorry, I cannot fix this.” I can’t fix swollen legs from lady who doesn’t want to give up eating foods with a lot of sodium in it. I cannot fix your chest pains if you’re not taking your nitroglycerine pills. I have to know my boundaries, know how far I can go before it starts taxing me. But you know what? I sleep well because I know I’ve done everything I could to make the situation as right as possible. I mean, my work is my life. Their lives are very sedentary, they’re in their little prisons emotionally, mentally and physically – I can relate. It reminds me of how I felt after Warren died, back in 1977.

My morning elder has Alzheimer’s. There are times when she doesn’t even have the ability to think about lifting her leg to help me put her slacks on. There are times when I have to tell her how to get in and out of the tub, step by step by step. It takes a lot out of me. I’ll try to find something in the newspaper to tell her and it is so difficult because her range of interest is so small. Her granddaughter talked to me once about how growing up her grandmother was not allowed to go beyond the farm. I thought to myself, “Not only is she isolated now, but she’s always been isolated.” That piece of insight helped me. It’s important to be empathetic – but there are times when you can be so sympathetic that you’re no help at all. It’s through learning about them – each Alzheimer’s, each dementia person is different. There’s no set formula. Maybe there are people who go in with a set formula, but I don’t. It’s very sad that the PCA course provides training for the physical needs of the elders, but there’s nothing in the course that would give you a clue that reading The Pasture by Bobby Frost would be a comfort to a dying lady. And you know, that is just so important.

*Name has been changed.