Category Archives: Volunteering

Comfort the comfortless. . .

“I’d like to volunteer with Physical Therapy, and also in one other place, just for perspective and experience,” I told the Volunteer Coordinator. “I don’t really know what I’d like it to be, so I’m open to trying anything, as long as it isn’t working with elderly people.”

I explained that with two of my grandparents in the state of “disaster waiting to happen” and one as an on-going disaster (he’s dying of Alzheimer’s), I just felt emotionally spent in the case of caring for failing elderly people. Maybe at some other point in my life it would mean I was very well equipped for caring for the elderly, but at this point in my life, I felt like it would be hitting far too close to home to be dealing with age-related failure.

Murphy’s Law being Murphy’s Law, I spent almost all of this Friday either feeding a patient with advanced dementia or sitting with an unresponsive 91 year old man.

It wasn’t deliberate, on either my part or the Volunteer Coordinator’s. We had decided to supplement my Physical Therapy with Orthopedics, as working with the hip/knee replacements at the “Joint Academy” seemed like a good complement. Basically, you get to see what the patients have to go through before they are even good enough to attend the Physical Therapy downstairs. Unfortunately, the first day I volunteered in Ortho, it was a Friday. Friday is the least busiest day at the Joint Academy half of Orthopedics, so I was mostly back in with the more long term patients (joint replacement patients are out within days).

I think I was mostly proven correct on all issues. I had a hard time not making disapproving faces with the person showing me how to feed the lady said dismissively, “She has very advanced dementia, she doesn’t know what’s going on around her.” I rankled when all the staff talked to her in baby-like sentences. I am sure she did have advanced dementia and I’m sure she was easily confused. She also had a very weak, very quiet, wavery voice, and you just about had to put your ear to her mouth to hear what she was saying. And you did have to speak slowly, so that she could understand you. She obviously had difficulty putting her sentences together, but she could communicate and they were very real thoughts, issues, struggles and confusions, and I am 100% sure she could understand how people were treating her.

So I found it very sad that the only people who seemed to be treating her as 100% human were me and a lady who I presume was her daughter, who showed up later. The staff didn’t treat her poorly; they just seemed to treat her as though she was stupid—instead of merely confused, forgetful, and frightened. She responded well to syrupy remarks of what a good job she was doing eating lunch of out of relief that they weren’t saying something was wrong or she was doing something wrong. Syrupy remarks are much more welcome than finding out once again what a scary, confusing life you are living in. But it still seemed to me that the staff didn’t have a good idea of what dementia was. A person can become crippled without becoming a lesser human. Their brains may be becoming as fragile as their bones, their memory breaking like a broken leg, but that doesn’t mean you dismiss them. It may become harder and more difficult for the person within the body to communicate with you, but that person is still there, and they can understand attitudes easier than words.

Unfortunately, the relief from watching a frail confused woman asking me “How did I get here?” was only to sit with a woman watching her father dying in the bed beside us. He had fallen and broken his hip, and I guess the strain of that and the corrective surgery was too much for his already ailing body. He appeared to be sleeping, breathing deeply (with the aid of an oxygen mask), but was entirely unresponsive and unable to wake. Most patients are accompanied by a close relative or friend, and I, coming from a very private family, recoil at the thought of intruding on such a personal time. But this lady was alone with her unresponsive father; her one sister lived on the other side of the continent, and her other sister had left on a cruise when the father appeared to be on the upswing (I believe the father fell after she left for the cruise).

I know well enough to know that time only goes more slowly when you have nothing to do but contemplate the awfulness of the situation. I had no doubt that it was a real service to sit and talk with her; but in talking we were both merely trying not to think. She was trying not to think about her dying father, and I was trying not to think how he looked so much like my grandfather (not in facial appearance, but in posture and frailty), and how my grandfather breathes with just as much of a rasp already, and how easily he could fall, and how easy it was for life to become too difficult for frail bodies.

So we talked. For hours. About Spring, and flowers, and gardens, and smoking, and families, and growth spurts, and we tried to ignore the sound of the oxygen machine. I felt bad to leave, but it seems they were getting ready to move him to Hospice, and it was time for me to go home. So I left.

And then I almost had an emotional break-down in the volunteer coordinator’s office.

I have come to realize that’s the way I work. I ignore, ignore, ignore and ignore, until something “triggers” me, and then there’s no avoiding it. Grandpa has pretty much plateaued, and I have simply become accustomed to the “new reality” of how Grandpa is, ignoring the thick clouds of doom and foreboding that try to overshadow and suffocate. But it is altogether impossible to avoid drawing the line from the frail body in the bed, wasted away and sucking oxygen, unresponsive and quiet—-to another body, my grandfather’s, just a few days previous. He fell asleep on the couch, using my leg as a pillow, his body scant more than skin and bones, exhausted from the effort of staying alive one more day. I had stroked his hair and his face, and listened to his deep breathing, rasping a little from years of smoking. He was curled up like some poor sad thing you had to protect, but he was only sleeping. Sleeping deeply would mean that the next day he would be more able to communicate, more able to eat, more able to live. But he is right on the edge; I cannot imagine it will take much to push him over to the point where it is no longer deep sleep that strengthens but unresponsive sleep from which he does not have the strength to rise.

And I recoil from that reminder. Oh, my heart does go out to the lady, and if they are still in Hospice when I get to the hospital next Wednesday, I will certainly stop in. But when you are working in PT, there is hope. People heal. People get better. People stop hurting. You can encourage people that things will get better. But it’s a hollow, empty lie once you get past a certain point. One of the staff came in, I think it was a kitchen person, and told they lady “You’ll see, he’ll wake up just like that, he’ll bounce right back.” I couldn’t say that. There are always miracles, you can’t say never. But I can see the frailty of his body, I know it has been through great amounts of damage. It is wearing out; it is used up. Death happens. You cannot deny it, you can’t say “It’s okay.” It’s not okay. You can’t say “It will get better.” It’s going down, it’s failing, there will be no rebound. There will be loss.

I know there is no avoiding this, in any life. And I know that it was far more comforting for that lady to not have to sit alone. But my mind flees being a spectator of this. It recoils away from watching grief and pain, turns away from any reminder of what inevitably will come. Isn’t it enough to deal with the hardship of your own life without having to drink in the loss and pain from others’ lives as well? I cannot do this.

I know that I can’t, yet I know that if He wants me to, He will make me able. Isn’t drinking in someone else’s pain so that there is less for them what bearing someone else’s burdens is about? Helping others is never an easy, light thing. You always have to sacrifice something of yours to help someone out. It may just be your time you have to give away, time you could have spent doing something else. But sometimes it is your safety—the safety of not feeling pain or loss or grief. To stop wrapping yourself up in the safe little cocoon of your own world, where if it is not happening to you than it cannot hurt you.

I didn’t want to go sit down next to the foreshadowing of my grandfather’s dying for several hours. But I didn’t want to leave her there alone in the present reality of her father’s dying. I couldn’t take away the reality of impending death, but I could take away the alone. I could take away the “nothing to do but sit and watch and wait for his last breath.” But to stay was to cause my own pain, only adding to pain I would inevitably have down the road. I could have avoided it. I could have spared myself. I wanted to avoid it, I tried to spare myself. But I was compelled to go in, to take some of the misery off her shoulders and put it on mine.

Now starts the bargaining. “Okay, so just this one time. I’ll be with this one lady this time, but next week I’m going in on Joint Academy’s busiest day. I will be far too busy to go back and sit with any dying people. Do you got that? Just this one time!” My empty defiance of God mocks me; instead of feeling confident I won’t have to do that again, I dread my next trip to Orthopedics, because I don’t want to see another confused dementia patient, I don’t want to sit with dying people. I see enough of that on Mondays, and I’m not looking for more. In reality, there probably won’t be a dementia patient there next time, and the dying people are usually very quickly moved to Hospice. But Friday made clear it wasn’t my choice to chose, and that He never promised me it wasn’t going to hurt. I want to chose the safe, happy places, where everyone gets better and nothing goes wrong. He put me in an awkward, uncomfortable, painful place, where I probably did more good than I ever did on a PT day. And I don’t really want to go back to it. I’d like to say that I do, that I would gladly give up my own safety and comfort in return for giving some to someone else. But I’m a selfish human being, and all I really want to say is, “Scary, runaway, runaway!” and not look back.

Well, as much as any person can say it, I am going back to Orthopedics next Wednesday. And it will be the busiest time for Joint Academy, but that hardly rules out dementia or dying people. In fact, even my safe-haven of PT doesn’t rule out either of those things. God grant me the grace.

Graceful

This past Wednesday I started volunteering with the Physical Therapists at one of the hospitals near(ish) to us. For most of the patients, you couldn’t tell by first glance what, if anything was wrong with them. Occaisionally you’d see someone who was limping or obviously stiff, but some of them appeared quite fit and healthy, bouncing down the hallway.

So it was hard not to do a double take when I saw a girl–a teenager, though quite emaciated–wheeling herself down the hall. She was followed, with obvious love and protection, by a silver-haired man I presumed to be her father. I was immediately caught in the catch-22 of neither staring at her nor avoiding eye-contact with her.

She was rail thin, though if she had been able to stand she probably would have been taller than me (I’m only 5; 1″). She seemed to hold her head up only with difficulty, and her fingers were arched in such a way as seemed to indicate she couldn’t get much use from them. But when I asked her if she was “Jess,” the next appointment I was expecting, and she answered yes with clear, calm voice. I went back and asked her PT where I should put her, since none of the stations struck me as particularly “wheelchair accessible”, and then brought back Jess.

She moved with complete confidence and accuracy, which made clear she had been in that wheelchair for quite some time. This made me all the more surprised when, after barely more than a hello to her PT, she began transferring herself to the bed. And I do mean “began”. I was surprised enough that she could use her wasted-away arms to support her weight, but some how I was even more surprised when she hooked her hand behind her knee and literally began hauling away at her own limb. It was something akin to watching someone hoist themselves by their own bootstraps—it should have been impossible, but there she was. It was a slow, tedious process, to be sure, but she was moving herself.

I wanted to watch the whole thing, but I had to keep doing other things, and I couldn’t shake the feeling that I shouldn’t be staring, even though her PT and the Student PT were both doing exactly that, though I supose medically speaking it would be referred to as “observing”. So when I had pause in my work, I “observed” too.

Lucky for me the Student PT was there, because that meant I got the benefit of hearing the PT explaining some things to him. Because Jess had no flexor control over her fingers, she had to grab ahold of things by “hooking” them in her wrist. This much I had observed. What I hadn’t realized was that, as the PT said “she has no abs—no functioning abs, so she always has to have a point of contact.” By this time, Jess had gotten one leg on to the bed, and was now working on the second leg. She had to brace herself on the bed with her right arm while hooking her left wrist under her second leg, jerking it inch by inch to join her first leg. She was bent nearly in half, with her head hanging down, and her short-but-stylish brown hair jerked along with the rest of her.

She finally made it to laying down in the center of the bed. I could see her face more clearly now; it was narrow, but very pretty, and not in a “make-up lady behind the counter” sort of way. She laid there very serenely while the PT explained to the student that they were going to be testing her nerve sensetivity. With a safety pin.

No, really. With a safety pin. Jess wasn’t to watch, and they would poke her in various places with with either the sharp side or the rounded side of the saftey pin. Jess had to be able to say if it was sharp or dull, and would be graded by how many she got right. In the case of her hands, she would have to say how much she could even feel it. The student wanted to know what would be the base measure of “how much”. The PT apologetically said to Jess that this was going to be very blunt, but “if she didn’t have feeling in her face, she wouldn’t be here with us now. So how it feels against her face is the base measurement of how it ought to feel.”

“Sharp. Sharp. Dull. Sharp. Dull. Sharp. Dull. Dull.”

I could hear her as I wiped down a bed. She sounded very patient—peaceful, even.

I didn’t get to see much of what they did with her, partly because I still don’t know if I should “intrude” on the patients by watching. But when it was over and she was transferring herself back to her chair, I came back.

She was once again bracing herself on one elbow, hooking a wrist behind a knee, and jerking herself along. Her head was hanging down, but she was chatting with the PT and the Student, and you could hear a smile in her voice. At one point the (male) student suddenly noticed that she had matched all her accesories to the color of her special gloves, and she stopped hauling on her leg long enough to look up at him in laughter that he was only just now, after the entire session, noticing. The PT said he was a guy, and she gave him credit for ever noticing at all.

Through this all, Jess continued to make achingly slow progress. You just about felt like crying when the rubber treads on her sneakers caught enough traction to keep her jerk from moving her leg, but she would just try again. And again. And again. She got herself to the edge of the bed, and had them posistion her chair for her. And then she attempted to get in the chair.

You see, the chair was slightly higher than the bed. This is okay when you are going from chair to bed, but it makes things much more difficult to go from bed to chair. The PT held down the corner of the wheelchair, but it seemed no matter how long and how hard she tried, Jess just couldn’t jerk herself into it. The PT offered to help; no, she was fine. Jerk. Jerk. Jerk.

After getting perhaps 1/3 of the way there and then making no progress at all—in between talking about a class trip and how she missed voting by a few weeks but managed to sway her dad into voting the way she wanted (a very smug smile there)—she slid her self back on the bed.

With the exact same amount of patience and sweetness that she had had when she first arrived, she asked for the chair to be slightly reposistioned. They did so; she tried again. When she got about as far as she had the first time; she paused, head still hanging down.

“Are you resting?” The PT checked to make sure she was all right.

“Mm-hmm.” Perfectly calm.

“She’s really getting a work-out—her tricepts are trembling,” the PT remarked to the Student.

In a few moments, Jess starts working again, this time using her head as well (jerking her head one direction encourages her hips to go in the other).

She gets about half-way through, and she just can’t do it any more, and she asks for help. Between her and the PT, she gets fully into the chair, and a still smiling, still serene Jess wheels herself out.

What are you supposed to think when you watch something like that? The PT looked sad. The Student looked like maybe he really pitied her. I felt extremely humbled.

I am sure that Jess is still perfectly human; I am sure she has her good days and her bad days, her days when life is looking up and her days where everything seems hopeless. But I seem to spend most of my days being impatient over what I can’t do or haven’t done yet. I, who spent most of the day trying to stream-line changing the beds into the most efficient process possible, shaving off seconds from every step and combining steps where I could—I don’t even consider the time it takes to get me from bed to chair or back again. I just do it, all the while think about all the things I’m not doing, I ought to be doing, I’ve yet to do, I want to do but can’t.

Jess was graceful. Not her body, which did not want to cooperate with her. But inside, the part of you that says you are perfectly justified to be upset and angry and impatient in the face of great difficulty. That part of you that says you are entitled to the life you think you want, the life you see others having.

Maybe some outside observer would have said I was the more graceful, as I changed pillowcases and disinfected beds in the space of mere moments, and that Jess was the one with problems, as she struggled to even move. But it seems to me that in my insides I boil with impatience and dissatisfaction, that I am the one with problems. And that inside of Jess, she was filled with grace.