By Ken Braiterman
“I should not talk about myself so much if there were anyone else I knew so well.”
Henry David Thoreau
“I should not talk so constantly about adjusting to life as a housebound person with profound mobility disabilities if there were not so much to learn, and these early stages of the learning curve did not demand every bit of my attention.”
Thursday, Feb. 7, 2013
The word “cripple” is politically incorrect, but the more polite euphemisms invented by the disabilities rights community sound ludicrous to me – differently abled, movement challenged, or something. I’m all those things, but they don’t describe how I feel.
I feel crippled.
My right hand and arm are practically useless, my low back and hips are so stiff and sore that they sometimes don’t hold my weight, and I’ve taken a lot of dangerous falls in and around the house. I need a walker to go 10 feet from my bed to the bathroom, or any farther than that, in or out of the house. I pee in a bottle, and sit on a raised toiet seat. Going out anywhere is a major, 2-person project, and I can only stand a couple of minutes SOMETIMES without leaning on something more secure than my hung bathroom sink,which hangs from the wall with nothing under it..
Today (Thursday, Feb. 7) is the last day of my first week home from Health South Rehab Hospital (HS). For two weeks there, I strengthened muscles, and learned safer, easier ways to do things around the house.
Before I was admitted, I fell five times at home over a weekend. Twice, I used the Life Alert button I wear around my neck at all times to summon the EMT’s. “I’ve fallen and I can’t get up!” as the old TV commercial used to say. The second time, they said, “You’d better come with us.”
They kept me in Concord Hospital one night making sure I hadn’t had a stroke, then transferred me to HS on the same campus
In November, before anyone said I definitely have Lou Gehrig’s Disease (ALS), I fell down a flight of stairs after choir practice at Temple Beth Jacob (TBJ) in Concord, NH, and the temple called the EMT’s, which pissed me off. I felt fine, even though I had fallen smack on the back of my head. I just felt a trifle woozy, like I “had my bell rung.”
Then, I got furious at myself when I allowed the ER docs to convince me to spend the night “just in case.” By then, the slight wooziness was gone, my EEG and CT scan were clear, and the only reason I saw to stay was to calm THEIR fear of sending me home alone. I spent a long, sleepless night taking my anger out on every hospital staff person above the rank of Nurse.
I did not fight the hospital this time. I knew I could not keep going as I had been. The promise of “rehab next” appealed to me because I had done so well in rehab in 2009, when my back and hips were so stiff and sore they crumpled under me, and I fell several times in public. I also walked with a distinct shuffle.
Rehab trained me out of that in ’09. Now, it was happening again, and I was ready for more rehab – two weeks in HS covered by Medicare. My private insurance pays all Medicare deductibles, and costs $250 per month. Now, that insurance is paying off like The Lottery.
Stripping My Apartment for Safety
HS was good; the five hours of daily training, rigorous and efficient, with no wasted motion. A few days before my release, the HS therapists and I met at my apartment with my brother David and his companion Mary Bergeron, who is family to my frail elderly mother and me. They made suggestion after suggestion to make the grossly cluttered place safer and more fung shue when I got home.
David had already made many suggestions for getting rid of my inappropriate over-stuffed furniture that was crammed in wall-to-wall-to-wall, with junk piled on every surface. Now, the traffic lanes were too narrow for my walker, which I would need inside the house at all times. There were a million tripping hazards, each an accident waiting to happen, and I sunk so deep into the chairs and sofa that I often had trouble getting up.
Still, I resisted each suggested change. David, who has been my devoted life-line through all this, threw up his hands and retired to a far corner. But the HS therapists persisted, and I accepted each change reluctantly, one at a time, partly because they made sense, and partly because I was out-numbered. Each decision was a gut-wrenching loss of autonomy and self, even though nothing in there was worth money or irreplaceable. Except for the art on the walls, which I’d gotten as gifts over a lifetime, which stayed, I did not care about any of it.
The Oriental rugs were nice, but only one was a real handmade Persian. The rest were inexpensive, machine-made copies. The real one was beautiful, but too worn to sell, and they were all very serious tripping and navigation hazards, especially the real one. So it all went, except for a few pieces the next door neighbor kept after helping David move it out. I’m glad they found a loving family.
It took David and Mary three days to get the place ready for me to return on Friday, Feb 1, while I stayed in HS strengthening my weak, right hand and arm, learning to use my left, and practicing with the walker.
When I got home, rehearsal was over, and my real life as a cripple, living alone at home, began.
I spent my first day getting used to my new “sparse” apartment, mostly liking it better than the old one. I also had one panic attack, and one fall overnight that brought the EMT’s, who picked me up off the slippery kitchen floor and tucked me in bed.
I took a very similar fall before bed Tuesday night. This time, I told Life Alert to call David, not the EMT’s, because it was only 9:30, and I’d learned the first time that they’d call David (my emergency contact) the next morning even if I asked them not to. Both falls were essential learning experiences that produced better safety precautions I’ll discuss later.
Since I did not get hurt either time, what I learned, and how I adjusted to prevent it in the future, were all that mattered. Stuff happens despite your best efforts; just don’t let the same stuff keep happening.
The therapist-types say all falls are serious because of the terrible things that might happen, like broken hips. That’s true, of course, but I say nobody was ever damaged by what might have happened. A setback is not a defeat if you learn from it and make adjustments.
My two falls this week were “educational,” not serious. I want to live with reasonable caution, not fear. Fear makes mistakes more likely, and tense muscles are more prone to injury.
The panic attack was about everything in general, cable TV in particular.
I need cable TV when I’m home alone, now much more than ever. I watch classic movies, PBS documentaries, baseball and football talk and history on the NFL and MLB networks, “Top Chef,” “Pawn Stars,” and the dump picker show, which I think are hilarious, and a few classic TV reruns now and then. I can’t read and write all the time. TV has been my reliable friend since Howdy Doody and Saturday morning cowboys, before Romper Room, Kaptain Kangaroo and The Mickey Mouse Club premiered.
When I got home Friday, with Mary, there was no cable TV. Mary and I could not get it back, and David would not be there for another few hours. I assumed one of them messed it up pushing buttons, and could tell it was an easy fix for someone who knew which buttons to push. While waiting for David, my panic escalated. When David came, he started pushing buttons and got nowhere. Then, when he refused to ask the next door neighbor, who fixes and installs cable TV for a living, I freaked out. When I blamed him for causing the problem, he walked out, as he should have. (The problem was probably caused by a 20-second power outage, I found out a few days later.)
The minute he left, I called the neighbor, who came right away, pushed some buttons, and fixed the problem in less than five minutes. Then, I called David and apologized.
The neighbor’s little boy, whom I think is gifted, came with him, and for the second time in a week, I told little children that I was sick and would not get well. Before that, I talked to dear friend Megan Wood’s two kids (7 and 10) when they came with her to see me at HS. Both her children are wonderful, but very different from each other. The older girl is smart, articulate, artistic, and interested in everything. The boy likes Little League, basketball, and Cub Scouts, but is quieter, and shows his moods more than his sister.
So I thought I was talking to the girl, but when I looked at her brother, he was listening just as intently. The boy next door asked the most intelligent questions, like does it have a name. Amyotrophic Lateral Sclerosis sounded like a very serious, big deal to him. The children reacted like adults. When they hear it directly from me, they also see how OK and matter-of-fact I feel. They pick up on my attitude.
It was the same with my 85-year-old mother, when I told her she was losing her oldest child. She accepted it from me when she saw how accepting and OK I was. Afraid of her reaction, my siblings and I had consulted with each other and a couple of professionals about what, when, and how to tell her, and who should tell her – we even considered telling her nothing — before I overruled everyone, and decided to tell her myself in person. She took it fine, and said she could not have taken it any other way from anybody else.
My attitude got back to my new “normal” – cheerful and accepting – once I got my cable TV back. I took my meds and went to bed.
Sometime later, I decided to get up and have a snack. I sat in the living room long enough to be sure I was fully awake, then headed to the kitchen. On the way, on the spur of the moment, I stopped at the computer and killed my low back and right hip spending much too long writing an e-mail that could have waited, or gone completely unwritten. I grabbed some cottage cheese from the fridge a few feet away, and started back to the living room to watch TV while I ate. I did this a few times a week before I got a walker from HS, and never gave it a thought.
At the kitchen door, I thought a piece of fruit would be nice as well, so I turned back to the fridge. That’s when the walker and my feet slid out from under me.
I could not get up because the floor was too slippery, so I hit the alarm button on my chest, and asked for the EMT’s, not David. I did not want to wake him or get a safety lecture. I did not want him to know I fell. So as I lay on the floor waiting for help, I made a mental list of things to learn, and do differently, to prevent the next fall. A mishap is not a defeat if you learn from it and adjust:
- No multi-tasking.
- No spur-of-the moment extra activities, or unplanned stops along to way.
- Every chore must be thought through and planned in advance step by step. Visualize the whole thing if possible.
- Be mindful all the time of what you are doing and what’s around and under you.
- I was still not ready to swear off carrying food to the TV, or eating late at night.
Since I had a lot more to learn about late-night snacks, I had to fall again in the kitchen Tuesday night.
When I was back in bed comfortably, except for a slightly bruised rib that still hurts a little, I decided that one fall, one panic attack, good walker skills, and a good attitude the rest of the day, added up to a pretty good first day home, especially since the walker was the last skill I learned at HS, and had the least experience using (their choice).
Over the weekend, I had visitors. A lot of people, especially from Temple, ask me if I need anything, and offer to bring it. I always need visitors more than things. Now that we got all my excess things out of here, I don’t want to start bring things back. But I do need to replace the chairs I sit in 90-plus percent of the time, by the computer and TV. They hurt my tailbone, and kill my back and hips.
I started carrying a urinal in my walker all the time, so I would never have to race to the bathroom with a walker. Hurrying anywhere with a walker is risky, especially if you’re trying not to wet yourself.
Getting out of bed first thing is a special technique I learned before HS. It’s almost always a race to the bathroom with a real risk of soaking yourself, the bed, and the whole floor. If you don’t do it right the first time, anxiety can start, and really slow you down.
The trick is to get on your side, near the edge of the bed, with your legs dangling over the side. Then, bounce your upper body up and down a few times, until you can get an elbow underneath. Push yourself vertical on it. Wait a few seconds for the dizziness to pass, then reach for the walker and lumber to the toilet.
Anxiety — fear of soaking everything — can make you waste bounces and precious time. So can the slow walk to the toilet with a walker. You can cut out the walk to the toilet by keeping the urinal next to the bed, and using it carefully enough to keep everything dry except the inside of the urinal.
You can save wasted, time-consuming bounces by accepting the need to bounce a few times. You’ll have enough time if you start right away. But if you get anxious and panicky, you can bounce forever, and keep falling back helplessly, until your entire world is soaking wet, and there are no nurse’s aides to repair the damage. I can also slide onto my knees, under control, facing the bed, and pull myself to my feet, on days bouncing takes too long. I call that the “Now I lay me down to sleep” position.
I’ve been home a week, without soaking my carpet, clothing, or bed sheets.
I throw money at other problems. Meals on Wheels comes five times a week for $10. The meal is worth about $2, too, but lunch is one less thing I have to think about.
My housekeeper Julia goes to the grocery store, bank, and Laundromat for me now, for her normal hourly wage. She’s like an executive assistant more than a house cleaner, and an excellent house cleaner. She’s completely reliable and capable. When I moved here in ’09, she packed and unpacked both apartments while I was in rehab, and remembered where everything was.
David or Mary do most of my other shopping.
Sunday, I spent all day getting cleaned up (sponge bath only; I’m not allowed in the shower alone) to have dinner and watch the Super Bowl with Megan. We had a nice time, and our team won. Ray Lewis, the best player of the generation, went out a winner.
Monday first thing, David drove me to our family doctor. I had my first attack of gout in HS, and my big toe still hurt like hell. The practitioner (whatever her title is) gave me a new anti-inflammatory, and it cleared up almost completely in a couple of days. It was great “fun,” my first weekend home, learning to use a walker with a big toe that could not stand to be touched, or hold any weight. I did it though. The trick was not minding the pain.
Meals on Wheels started at noon Monday, and I had a great phone visit with my other best friend, Corinna West from Kansas City. We became friends in 2008, and I encouraged her to create her own job when she ran out her string at Mental Health America of the Heartland. So she started Wellness Wordworks, and made me board chair and website editor. We also have the most equal, mutual peer support relationship I’ve ever seen. We each saved the other more than once.
Tuesday, I was too busy for my own good. After my usual phone chat with Megan, in her car on her way to work, my schedule consisted of Rabbi Robin Nafshi from TBJ, Meals on Wheels’s first visit, my home health aide from Visiting Nurses (VNA) to give me my first twice-weekly shower, and Julia, to pick up her list of groceries and other errands for Wednesday.
Tuesday morning, the physical and occupational therapists from VNA called to say they’d be over later for some therapy and their own evaluations and treatment planning. The day was too long and full. After another near-sleepless night, I woke before dawn Tuesday, dressed, had coffee, and inventoried the pain in my right hip, side, and toe from fatigue and gout.
I wrote for 3 hours, getting seasick because David and the HS therapists took the wheels off my desk chair. There was no longer a risk it would slide out from under me, but the feet did not sit flat on floor. I used my supply of stationery to even the legs, keeping the cardboard-backed legal pads under the seat, safely out of the traffic and tripping lanes.
I was just finishing that when PT from VNA came, a lovely Christian gentleman my age. He evaluated, made PT goals, and chatted for an hour, until Robin came right on time at 11. It was another lovely visit. Lunch came, and I went to bed right after that for 60-90 minutes.
I woke up feeling less pain, and more relaxed, 15 minutes before Home Health Aide arrived. The OT came with her to watch me deal with the bathroom, a big part of her evaluation and treatment planning. The aide gave me a great shower – refreshing, efficient, but as sexual as a haircut. I felt so good when she was done.
OT made a list of 5 shower things for David to buy, and I called him, glad he had a day off from me (till the fall that night.)
Julia came to pick up the laundry and go over her list for Wednesday, including groceries. Buying, cooking, and eating fresh food had been very important, enjoyable parts of my life, but now, using the old electric stove was unsafe. David had disconnected it.
Julia and I would have to do some trial and error for a while to find a few canned soups and microwave-only frozen meals I liked. I knew nothing about that kind of food; I’d made all my meals from scratch before. I was not sure how much cooking I’d be able to do in the future, but for now, I could not do any. The safety of counter top electric appliances fry pans was still under question.
Around 9, after a supper of cold, leftover turkey pie from Super Sunday, and good deli potato salad, I had no portable food till the next day. Tired and hungry for a bedtime snack around 9, AFTER I TOOK AMBIEN, a sleeping pill HS had started with me, I decided to nuke some oatmeal.
That was a big big mistake. I never considered how many things I had to pull out and put together, or that you can’t carry hot oatmeal with a walker. While setting up the snack on the kitchen table, two steps from the microwave, the walker slid out from under me, and I fell on my tummy. I was not injured except for my pride, because I messed up what had been a full, perfect day at almost bedtime.
I could not get up, had nothing to grab onto. My right side was too weak, and the kitchen floor was much too slippery. I pushed the Life Alert button on my neck, and told them to call David, not the EMT’s, because it was still reasonably early. I felt terrible about spoiling his day off from me.
With a lot of effort, cooperation, and creativity – he can’t lift me alone – we got my ass off the floor, and into a kitchen chair. We pushed the chair to the carpeted office, where I had traction, and I used the walker back to the living room. Then, David served me the oatmeal, which I no longer wanted, but ate anyway, while he straightened the kitchen and put me in bed for the night.
I was so tired my right arm was paralyzed. I could not grip the walker, just let rest my hand and hanging arm on it. We were both too terrified to say anything at the time. Was the ALS progressing to a new irreversible level?
This fall was a screw-up. On this learning curve, screw-ups are OK, provided you don’t get hurt, learn what went wrong, and make a procedure or plan to prevent it next time. Here’s what we learned:
That kitchen floor is dangerously slippery. This was my second late-night fall on that floor since coming home from rehab. The plan is:
- Don’t go on that floor without sneakers. Wear sneakers in the house all the time, so you don’t get lazy or adventurous, and try to do the kitchen without them.
- This is my second late-night fall after taking Ambien, the sleep med they gave me in rehab. Both falls are like the kind of late-night Ambien falls they warned me about. I had taken Ambien the previous two nights, and slept just 3 hours each time, so it does not do what it should do, just what it should not..
- I TOOK AMBIEN OUT OF MY DAILY PILL PLANNER, AND STOPPED IT COMPLETELY.
- Transferring hot food from the microwave to the table on a walker needs more thought before I try it again. This time, I was transferring hot oatmeal from the microwave to the kitchen table by turning 180 degrees. Before I start eating my microwave-only meals, I must study them, and develop a safe procedure.
- I now have graham crackers, vanilla wafers, granola bars, cottage cheese, and fruit for late-night snacks.
Wednesday was a great day. VNA solved two problems that had been puzzling me all week, and when I woke up, the gout pain in my foot was almost gone.
Most important, the paralysis in my right arm David and I noticed Tueday night was also gone. In the morning, I could lift my hand again, grip and squeeze a little, touch each finger with my thumb, and do a few rehab exercises again, as well as before.
David told me he did not sleep Tuesday, worrying if he’d have to put me in a nursing home, and if all our efforts to keep me in my apartment had been futile. He had warned me the night before that I’d be unable to stay home if I kept falling. He said the arm paralysis had scared him the most.
Me too, I told him.
OT^ came and showed me a safe way to move warm sandwiches from the microwave to the table, and said they make trays that attach to the walker that would let me move warm entrees the same way.
Then, she attached my grabber to my walker so it would go wherever I did. That’s my favorite rehab tool. It reaches down and picks up anything off the floor, as small as a baby aspirin.. But it’s never where I need it because I absentmindedly walk away from it. Same is true of my phone, which I now carry wherever I go in the basket of my walker. Finally, we did some hand exercises.
Thursday, I was awakened at 1 a.m. by the sound of this diary banging around in my head. I’d been making notes on it all week, but now, whole sentences and paragraphs were forming. After lying in bed with that for an hour, my experience told me this subject was so ready to write that the only way to stop the noise was to start writing. So I did, from 2 a.m. to 7 p.m., a “work-a-holocaust.”
I got a rough draft into the computer through Tuesday night. Then, I could stop, knowing I’d be able to finish it later. Also, I had broken my back sitting in that horrible chair that rocked and made me seasick and wrecked my lower back and hip.
Late Thursday afternoon, predictions of 3 feet of snow for the weekend started to worry me when they started warning against power outages. For me, that means no heat, maybe for a few days. So I called VNA to ask if there was an emergency plan for shut-ins.
They gave me a name and phone number in the Office of the Health and Human Serves Commissioner. When I reached her, it was late afternoon, she did not know the answer, and everyone had gone home. But she said she would stay on the question tomorrow until she was “sure I was on somebody’s radar screen.”
True to her word, she called the next morning with another name in the Office of Emergency Planning. When I called there, they already knew who I was, and said they were still working on it. By 10 a.m., someone from the non-profit sector called, and we had a Plan A and B within a few minutes.
Plan A is to have David pick me up and take me to his house, where I’d be most comfortable and get the best care. If that’s impossible, I should call 911. They will have my name and information in their computer, and would send someone to take me to a nursing home to sit out the crisis. Having made the plan, the storm dumped at least two feet of snow, with high winds, and I did not lose power.
I mention this, even though it happened Friday, at the start of the second week, to demonstrate the high caliber of state and non-profit employees this state has, despite what political demagogues and many citizens say – that they have no value, but their price is always too high.
What’s it worth to have a bureaucracy that’s willing and able to make an individual with complex disabilities feel safe and cared about, in his home in a major storm?
That’s the story of my first week as a “cripple” home alone.