Compassion and Insight: Mike Jones' Story

Mike Jones is a Personal Support Specialist (PSS) who has been working in the Bangor area for more than eleven years. In his time as a PSS, he has taken advantage of every training opportunity offered to him and has also been qualified as a Certified Nurse's Assistant, a Certified Hospice Aide, a Certified Residential Medication Assistant, and a Mental Health Rehab Tech among others. As he says, he has a "string of an alphabet" after his name that's proof of his willingness to accept a new challenge and to learn more about his work. He's been doing home-based care in Maine for the past five years. He believes in empathy and compassion, not sympathy. As he says, he doesn't "sugar-coat" when he goes into a consumer's home, and he doesn't need to. His easygoing nature and genuine concern for the consumers he works with make him a great Personal Support Specialist.

Finding a Place in Homecare

One thing I like about home-based care is that you can take time with the clients. In nursing homes, you don't have that luxury. The nursing home that I used to work in had six or seven residents per CNA. When you're trying to get people bathed and dressed and the teeth in the mouth, and the whole nine yards, and get them to the breakfast table, that gives you all of about ten minutes per person. That doesn't allow you to treat them as a person. I think it's somewhat dehumanizing.

I get a sense of the client's wellbeing at home, where they are most comfortable. They'll heal better, they'll feel better, and they'll live better in their familiar surroundings. It also gives the worker a sense of wellbeing knowing that we have gone in and done something good. Not that we're angels or miracle workers, but one of my philosophies is to leave them with a smile. I'll think all day long of some ridiculous thing to say, of some crazy joke to tell them. If you leave them with a smile, they'll remember that and look forward to you coming back.

Over the years, I have had to try harder to do better than my female coworkers. It sounds sexist, but nursing is traditionally women's work. When I tell people what I do, or when I come into somebody's house, one of the first things they think is, "He's not a 'man,' he's doing women's work." Mostly we think of men as doctors, therapists -- you might find them in the hospitals, as orderlies or things like that. To have men doing home healthcare, real hands-on stuff like housework, they think that there's got to be something a little bit "wrong."

People will ask me, "Well, do you know how to give a bath?" I've had the same training as everyone else. Our individual ways of doing things might be a little bit different, but basically we get the same training. "Well, doesn't a woman's body bother you?" No more so then a man's does. A body is a body. All women are built the same, and all men are built the same.

There was this one couple I worked with that were in their early nineties when I started with them. They had been married for 74 years at the time of the husband's death. When I first started there, they were very leery about having a man helping them. She watched me like a hawk. When I take on a client and go into their home, in a way that becomes my home too. I ask them how they want things done, where they want things put and work with their preferences. But usually, after the first couple visits, they don't have to tell me what to do or ask me to do something. It all becomes part of the routine.

It helps some that the cooking I do is of the old fashion style – good old home cooking. I don't just take something out of the freezer, pop it into the microwave, toss it onto the table and call it lunch. I found out that this woman loved haddock so one day I cooked it the way I like it; rolled in cornmeal and fried. She loved it, wouldn't have it any other way after that. I hadn't been working there very long when she started making these broad hints, "Gee, I wish somebody would make me some chocolate chip cookies. I haven't had a good homemade cookie in a long time." I was thinking "I'm only here for two hours and all this other stuff needs to be done." Yet, I really wanted to do it for her. The answer? I went to the store; got some Betty Crocker pouch mixes, added an egg, a stick of butter, cooked them off and she had homemade chocolate chip cookies. She was so happy, so appreciative. I made those cookies at least once a week for over two years.

I could sit and talk with this couple for hours about the history that they had lived through beyond my time here on earth. I loved it. Put the two of them together and you had almost two hundred years of history. I think part of the advantage of the older, more seasoned workers is that we have some knowledge behind us that we can draw on to relate to our clients. It distresses me that some of the younger workers have only learned the quick way to do things. You put them in a home and say, "Okay, you have to do all this." They think, "How am I going to do it all?" Sometimes it can be overwhelming for them. When you get an old workhorse like me come plodding along, we don't get excited about this stuff. For us, it's just part of life.

Most days, I'm up at five or five-thirty. I see my first client around seven or seven-thirty in the morning, six days a week. Five days a week, I'm working until 10 o'clock or later at night. So essentially I'm putting in sixteen hour days, plus meetings, plus doing personal errands for my clients. I work all those long days, and I do so without any benefits; no insurance of any kind. I can't even afford to buy my own medications. It has been over a year since I last saw my doctor. What am I supposed to do? You work until you drop, until you yourself become a client. Then you have to go into the state Medicare programs, or MaineCare, you have no choice. I say let's get some of these policy makers down here to get their hands dirty. Let them walk in my shoes for a week, at my pay. I'd like to see what they think of it then.

Daily Insights

I don't form emotional ties with the clients because it's not a very good policy to do so. I can't help but enjoy working with them while I'm actually working with them, but I have to keep a certain degree of emotional detachment so I don't unravel when something like hospitalization or death comes along. If you think about it, death is a part of life. It's the natural ending of life. It's unfortunate that it comes when it does in some cases, and in the manner in which it is delivered, but death is a part of life. I keep that thought in mind and couple it with the fact that the majority of our clients are in the later part of their life when we go into the home to begin with. Once you reach a certain age, really, there shouldn't be any "unexpected death." Once you start life, death must be expected. It's the timing and means that throw us off.

I did Hospice work for a while. Hospice is working with terminally ill people, usually within the last six months of life, because that's when insurances and Medicare will pay for the services. Sometimes the doctors get fooled and they go beyond six months, but they're usually on the mark. My philosophy in working in Hospice was that I was not allowing people to die with dignity, but rather to live with dignity until they died. I had a Hospice client once that had a very profound effect on me. At sixty years old, she was diagnosed terminal with lung cancer. She was a college professor and had taught overseas at a number of universities; a very interesting person. I got called and I was putting in about twenty hours a week with her. She had 24/7 coverage by CNAs and RNs. I was involved with her care, hand in hand, with the RN's. I helped them perform duties that they were required to do that CNAs usually don't get involved with. The woman had gone through a procedure of deadening the nerves in her mid-back that rendered her legs useless. The procedure required that she lie on her back, legs elevated, for a number of hours. Because of the procedure and her compromised system, within days she developed a pressure sore on the base of her spine. That procedure was performed just before Christmas and not long after that she went into a nursing home during a big ice storm for five days. Not to degrade in any way the nursing home, but simply because of logistics and staff shortages, she didn't get the individualized attention she needed. The pressure sore advanced and by the time this lady passed away it was huge. She had no healing powers. I had to help the RN treat it simply because she couldn't turn the lady onto her side or stomach to treat her back, and the sore was just bigger then what she could handle alone. She needed an extra set of hands. I got into a lot of situations with her and other Hospice clients that I normally wouldn't as a CNA.

This client was a very private person. I don't know if it was something she sensed about me, but she opened up to me a lot more then she did with the others. Something she had been ready to take to the grave with her, that she confided in me, really hit home. Because of the lifestyle she had determined to be right for her, she had been rejected by her adoptive father. This really impacted me because she and I shared that aspect of life. She had only one other living relative that she knew about, and was there dying alone. I thought, "This could be me in another twenty years." That hit really close to home.

The last time I saw her, I was being relieved by the next worker. I'd already been there for my shift. She was beyond speech at this time, but she was still alert. I walked up beside her bed, the other CNA was holding her hand, and she turned a little bit in my direction and looked at me. She didn't move her lips, but she had a look in her eyes that said she knew this was the end. She looked right at me and with her eyes said "Thank you." I picked her hand up, kissed it, and said, "Little Sister, I'll see you the next time the circus is in town." I left, stopped at the store for a few things, and went home. Twenty minutes later, I got a call from the other CNA telling me that she had died.

I stopped doing Hospice a little while after that. That was a once in a lifetime situation.

Although I may seem cold-hearted at times, there is life under there. That situation rattled me to my foundations and I don't know how many of those I would be willing to take. When you're sitting there for hours and you're discussing politics, you're discussing education, music, life in general, world events, you're reading the newspaper to her, you're fixing meals, feeding her, trying to get her to drink – it brings you into such a bond with that person that you bend and you're almost a part of each other. And I knew she was going to die, but I didn't expect that feeling to happen. But she looked at me with her eyes and said thank you and that just rattled me. It was worth it, though. It's things like that that make a lifetime of this work worth it.

Being Challenged

Right now, I've got eight clients. Most of them are more "housekeeping" type personal support. I do some housework, laundry, grocery shopping, that sort of thing. For most of them, there's not really any hands-on direct care. However, there's this one guy, Eric, who's wheelchair bound and almost total care. I spend an average of twenty-one hours a week with him.

He's been fighting for almost five years to live on his own. He was put into a nursing home, and he lived there for a while. Then he wanted to exert his right to live independently, he wanted a life and finally got his apartment. I love his upbeat attitude towards things. Here he is in need of almost total care – by all means he should have somebody living there with him, but he lives alone. He goes out to a day program which is a challenge in itself. Medicaid at the state level just cut funding for that sort of program and he was reduced from six hours a day to five. That doesn't seem much of a difference until you figure he has to coordinate with somebody to be there to let him into his apartment. The program he goes to will not allow their drivers to let him in or out of the building. It's been a struggle, but he now has a fantastic caseworker from a local agency who will go to bat for him, swinging both arms. Things are getting done.

When my agency signed on to take his case, we all juggled schedules around to help accommodate him – within reason, of course. I was in a locked-in time slot for that 96 year old woman I talked about earlier, so I had to go in and take care of Eric before I went down to her house. This, plus I worked around Eric's schedule at the day program. I had to shift a few clients to other workers in order to take on Eric in the manner in which he needed services.

Eric just about challenges every part of my ten years of training and experience. He is total care, which means I bathe him, I dress him, and feed him. I also assist him with medications. He has a pill box that I put his meds in at his direction, then help him take them. I make his bed, I sweep and mop his floors, I cook whatever he wants for meals, I do up the dishes, I even empty and clean the cat's box. I help him keep his appointments straight, and remind him when he has something coming up. He is pretty good at keeping a lot of information in his mind but just to make sure we use a double-check system. I remind him of things and he reminds me of things. At first, Eric was very leery of having a man come in and tend to him because of things in his past. He had used other agencies in the area with no success, so he said, "Okay, I need this, so I'll go with this guy and see how it works. If it doesn't work, we'll make new arrangements." After a couple weeks, right in front of me, he talked with my supervisor on the telephone and said, "I resolved my issues, I want this guy here. I feel comfortable with him here." Our relationship has just gotten better from there.

I can be dead tired and have to drag my backside out of bed to go to work, but the minute I go into the house it's like a switch is turned on for me. Can you imagine day after day going to work with a smile on your face, upbeat? It's impossible. But you have to do it and he helps. Of course, when he's down he drags you down a little bit because it's frustrating that I can't push a button and make things better. It pleases me he has gained weight. He's eating better. When I first started working with him, if he was lying on his bed it was like looking at someone with anorexia. He was just all bones with a little bit of skin stretched over them. Now when he is sitting up in his wheelchair, he's got a paunch – a belly! I can tell he has gained weight because of the way we transfer him from his chair to the bed, or the other way around. At first, I could actually pick him up and lift him around to the bed or chair. I didn't do it that way, but he was so light that I could have. Now, we have to use the bunny hop method; a modified stand and pivot. My arms and joints can tell the difference as well. As I get older and my arthritis progresses, it becomes harder on me. If he continues to gain weight there will be a time when we're going to have to use the Hoya lift.

Eric discusses problems with his girlfriend with me; he discusses problems with his family with me. Sometimes I'm dealing with his depression, anxiety, things that I have learned about in the past. So, it all plays in – CNA, PCA, homemaker, mental health worker, medications. His is a challenging situation. He is a joy to be with because when his mood is up there, he has a laugh on him that would make a rock laugh. You just can't help but fall in love with the guy.

A few weeks ago, Eric got himself a new little kitten. He loves baby animals. He already has a cat that's five years old that's very important to him. Well, the new kitten just grew on me, literally, because I'd be bathing Eric and she'd be there trying to climb up my leg to join in. One day, he and one of his other aides were doing something in the bedroom; probably changing into more comfortable clothing for just sitting around the house. Eric uses a three or four hundred pound electric wheelchair and he's always very careful of his animals and people. But the kitten moved just a little bit too fast at the wrong time and he backed over it and killed it. The other aide was actually holding the kitten when it expired. That alone is tough, to be holding something in your hands when it dies, but then to have to deal with Eric's emotions was very difficult.

The first thing out of Eric's mouth when I came in that evening was about the kitten. "I murdered my own kitten. I killed my kitten!" Now, how does one console someone in a situation like that? I just had to keep telling him that he is not a bad person, that he loves animals and would never intentionally hurt one. I told him he cannot see all points around him at the same time and that the kitten just moved too fast at the wrong time. He still had trouble for a couple of weeks just talking about it.

You see, as PCAs, this is what we do. This is what we run into, almost on a daily basis.

This job is not just a matter of sweeping floors, doing dishes and washing somebody's behind. An RN or an LPN or a therapist comes in for a short visit for a very specific purpose. Of course, they would listen if a client had something to say, but they just don't have the time to stand there and get into it. As PCAs we don't deal on that level. We go into that home for general purposes and that means you can get hit with anything going and you have to be ready for it. A message that I would impart to people is, don't just look at the surface of what we do. Think about what a person coming into your home would go through if they were working for you. Think of the things they would have to do, the people they would have to encounter in all the various situations life dishes out.

I'm very pleased that they have changed our designation from Personal Care Attendant to Personal Support Specialist. If we are doing our job right, we provide support in a wide range of issues and situations, and we do become specialists. We work on a very personal basis. Do you know how many people I meet who ask, in casual conversation, what I do for work? When I tell them that I am a Personal Care Attendant, a Personal Support Specialist, they sort of wrinkle their noses and say something like, "Oh, you go in and give bathes and sweep floors, and stuff like that." Then they will add "I could never do that." Well, if the general public can't do that, doesn't that make me a specialist because I do it effectively, and continue to do it? That needs to be recognized