The Heart of Caregiving: Denise St. Pierre's Story

Denise St. Pierre and her family could teach us many lessons about what it means to be a caregiver. Denise had worked as a PSS for five years when her husband Roger was in a severe motorcycle accident in the summer of 2006. After spending several months in facilities, Roger came home in December. Denise, along with her sons and a staff of home health professionals, are settling into daily life. It's certainly different from before, but with the same blessing and the same commitment to caring for each other. "I don't like it when people say that I'm so amazing for staying home and being Roger's primary caregiver. We're married; we take care of each other. He would do the same thing for me, and we both know it." The St. Pierre home is full of warmth and laughter, and the hardships that the family is beset by are faced together with a great deal of dignity, love and strength.

What Does it Mean to be a Good Caregiver?

Before I stopped working to take care of my husband, I had done homecare as a PSS for about five years. I think some people come into it with no idea that it is a professional job. Anybody can sweep the floor and clean the toilet, but there's much more to it than that. There were experiences that were priceless to me in the job, and I'm going to miss them, I'm going to miss the people. Obviously, I'm glad for the experience that I had because now that I'm the primary caregiver for my husband, I find myself using all that I learned. And I am still learning so much. For example, I had never, ever in my life given someone else a shave. Think of just that simple skill of taking the shaving cream and the blade and having to do someone's face. It seems like a menial task, but it is an important part of a person's life. When people look good they feel better about themselves. And you might think, "Well, anybody could do that," but you know what? It's not as easy as it sounds. But just because it's not easy, it doesn't mean it's not getting done.

When I was a caregiver, often times my consumer and I would go to the store and the store clerks would ask me questions when they needed to know something about the person I was with. If the deli person looked at me and asked if there was anything else I needed I would just say, "Don't ask me, ask him." The point being why would I take away something that someone was capable of doing themselves? You cannot live your life just sitting in a chair. Sometimes, even if I could get something done more efficiently, I wouldn't do it. For example, I developed this system with one consumer where he could still sweep his floor. He couldn't bend over to use the dustpan so instead, he'd sweep it all under the rug. For a day or two nobody knew it was under there, which meant that he could still continue to do the chore he had always done, and that was important to him. And it was fun because it became a little secret between us. I would go to his house and say, "Okay, today's the day we're going to vacuum," and he'd take his cane or his foot to lift the part of the rug that revealed the little pile of dirt waiting there for me.

I have now, personally, dealt with many caregivers since Roger went into the hospital. I guess I have a new angle on it. Beyond the given things like maintaining cleanliness, good caregiving is when somebody is truly interested in what's going on with a person and responds to their individual needs. That is really important, no matter whether it's just listening to your gripes of the moment, or looking at pictures on the wall and conversing about them. Most of our hospital experiences were positive. While some were not so good, others were just wonderful. One hospital in particular was great about respecting the family and fully understanding what an important part of his care we were. I felt just as important in that place as my husband did. I remember there was one day when two of his caregivers wanted him to look nice and went out of their way to do that for him, and it really showed. The dignity issue is of prime importance. The flip side of that is how much it would annoy me when someone would knock and just rip the door open before we had the chance to say, "Hold on a second" and cover him up. These sound like small things, but actually they are not.

Using your Voice

Up until my husband's accident, I was a pretty active member of Maine PASA. The biggest part of what I did for PASA was to provide the direct-care worker perspective when it was needed. There were a few big meetings that I went to where it was just me and maybe one or two other direct-care workers, while the rest of the room held administration or executives. We were there to give our input and we'd have to say things like, "Hey wait a minute here. You're looking at this issue from a financial perspective and you're forgetting that these are people you're dealing with." I was also one of the direct-care workers who participated in the LEADS project. That had a lot to do with communication inside of my agency, which was good because I was able to inform my needs to the office staff. And on the flip side, it gave me an opportunity to see what they go through, because they are the ones who get the phone calls from the consumer when something goes wrong. I would always try to remember that there are two sides to everything. If you can get workers who will be open to the fact that they can't have everything their way, and the same of the people in the office, then you can try to figure out some middle ground and reach your common goal. When it becomes more realistic for us, I would like very much to get involved with PASA again. What I am finding most helpful now is what I learned while I was working for them.

I think one of the things that's been so important is that I've learned that I must use my voice to advocate for myself and for my husband. Before, I was always somebody who thought, "However the doctors and nurses want to do something, I guess it's okay." I learned very quickly after Roger's accident that there are many, many things which should be questioned. I can have blind faith in my life as far as knowing that I'll have food tomorrow, but as far as doctors go? That is not going to happen anymore. When they would add another medication to his mix I would come home, yank out my PDR and start looking at all of them. Then I would go back to the hospital, find his doctor and say, "I need to chat with you. Why do you think this is the best medication?" Doctors and nurses are professionals, and they know what they're doing, but I also found that they were really good about listening to us. Many of them seemed to welcome my input because I was there with him so much, and I saw things they didn't. I learned that when you have all these doctors, they each have their own opinion about how things should be done. Sometimes, even on two different floors in the same hospital, things are handled differently.

I know now that if there's something I bump into down the road that I don't like, I can say something about it. I wasn't shy at all to tell the rehab center in Massachusetts a couple of things which I could see needed to be changed. They asked, "What about the nursing staff? What about the assistants? What about this and that?" I told them that they have a few people who need to work on a few things. I was honest with them because I knew that the only way they could make a change was by my being honest, instead of saying, "Oh, yeah, it was wonderful." Well, most of it was wonderful, but there were a few moments that could have been better if they had learned how to improve upon them.

In the past year or so, I've become pretty interested in different parts of government and how things work. Instead of letting all those things happen and not really paying attention to what's going on, I decided at the age of forty that I should try to learn how I can make a change. All of these things affect us. Yesterday I read in the newspaper that there's a bill about speech therapy which may be coming up soon. That really hit home for me because my husband has issues with swallowing and with his speech. So if at some point in the future he was denied speech therapy by Medicare, Medicaid or whatever government body, he would not be able to progress. I thought to myself, "Wow, it would be so cool for us to go up to Augusta where he could testify in front of the legislature about this." It is a wonderful feeling to realize that you have a voice and you can make a difference.

There is Good in Everything

You know, there is good in everything that happens in life. Some people aren't open to finding it, but I refuse to be one of them. I know that Roger is unable to do a lot of the things he used to do. If I could go back and make it so that this never happened, of course I would. But it has happened, so now we have a chance to take on the situation and find the good things. I could sit down and write pages and volumes of the blessings that have come from this situation, but the best blessing by far is that he is still here with us.

Roger was in the intensive care unit for almost two months after the accident. When you are in there as long as we were, you get to know the other people who are also there for the long haul. There was one couple who totally embraced me when I came in. They had been there for several weeks already; they knew how things were and I was blessed to have them in those first days. Later, at a point where I was one of the veterans, a woman came in and I chatted with her. It is in this little world where one learns how to share, and how to help other people get through it. This particular woman's husband had been injured in an ATV accident. It was so good that we had each other, because there was no one else who could relate to what I was going through in the specific way that she could because she, too, was a wife whose husband was in there. And she was very much the way I used to be in not wanting to ask questions, not believing she was entitled to an explanation. One day she was saying, "Well, they want to do this with him and this, and I don't really understand." I just told her, "You have every right to ask why they're putting him on a certain medication, or why they want to do this or that. If you don't understand something you have every right to ask." We helped each other learn both how to trust and how to ask questions. We formed these close relationships and that was a part of what got me through that tough time.

Roger has been home now for a little while, and we are beginning to find our way in our own routine. Trial and error, of course. We have a nurse who comes in twice a week, and then we have physical therapy, occupational therapy and speech therapy. That's an adjustment being made, to have all these people coming into my home. Most of the time I don't have any issues with it. But then there will be times when I'm doing something with him and one of the people coming in will want to contradict me. It's tricky. Sometimes I just tell them, "I've been doing it this way for a week and it works well, so this is the way we do it." Also, being a family member, I have to keep in mind that there are things his nurse and therapists know that I don't. So I try to learn all that I can. For example, wound care is something I really have to know about because pressure sores are going to be one of our biggest battles. I have to be able to visualize in my head how a wound is healing so that when the nurse suggests or says something, I can understand how that's going to play into the wound care. I can remember that wall of defensiveness that sometimes came up between me and certain family members when I was going into consumers' homes -- now I am on the other side of it.

It's been a real learning process, but we've been able to consolidate when people are coming so we can have blocks of time when nobody's here. No one comes on the weekends, so I consider those my days off and I don't do any paperwork. Those are our days to relax and just be together. I know that I have a major plan for this afternoon to be on the bed next to him and take a nap. Sometimes I'll take twenty minutes, lie down and just doze off. He might be awake the whole time. Then I'll wake up to hear him say, "You were snoring," and I'll answer, "No I wasn't." That kind of thing is really important. I'm learning that if I have to take a nap, I must take that nap. Or if the phone starts ringing, I may or may not answer it. That's what voicemail is for. I go out. I was gone for a couple of hours yesterday and half the time was spent just wandering the stores, doing some window shopping and taking some time for myself. Our sons have learned to do things so that if I need to leave, they can be here for a while. Or if we need something, they are willing to run those errands. We are all so blessed to have each other.