Disappearing nurse aides

Over the last few weeks, several aides have quit, or were terminated, or otherwise left the schedule. I have to say when this happens it's always upsetting. Nursing homes never have enough aides – no matter what. There are seldom enough to fill in when there is a sudden illness or an accident; let alone, when someone leaves.

This time of the year the aides (most of whom are the working poor) file their income taxes early.. Then some decide to job jump when they get their refunds. I guess I can't say I blame them. But going to another nursing home after becoming just getting used to it doesn't sound appealing to me. Even higher pay as an incentive surprises me. One aide told me she was going to drive 45 minutes to a job to be paid three or four dollars more more an hour.. I told her there is no way that she will net out as much of that increase as she thinks.

I worked about 45 minutes from my home for a while and I put a lot of gas and miles on my van. I liked the job. But working in a town that you don't live in is quite different. I felt separated from everything.

The nurse manager is patching the schedule together. I suppose eventually they were hire aides. Or, they will send housekeepers or dietary aides to nurse aide training classes so they can fill in the spots. This has been the pattern at this nursing home, and I think it's the same at others..

It's too bad that aides have to move around so much. I also think it's a young person phenomena. Young people do it more often. But the working poor do not care much about "resume building". I guess they don't care if a future boss questions why they moved around so much. I guess low-wage job longevity somehow doesn't matter. I always thought that loyalty mattered. I also thought staying in a job, learning it, and toughing it out was important. Young people only think how they feel right now, not how they might feel in a few months.

I know there are some potential nursing home employees who take advantage nursing homes. If they are trained nurse aides, they can easily get a job, work for a year, and then quit. I've seen a lot of it. They move on to something else..At this nursing home, a few aides aides and even a couple of nurses (LPNs) left to go to a factory which pays more. I cannot think that working in a factory would be better. But maybe they feel the job in a nursing home is watching too much heartbreak every day. In that way it might be better to be on a factory line making an appliance or an automobile. Working with inanimate objects might seem like heaven after dealing with complaining residents throughout an 8 or 12 hour shift.

I have gotten very good at saying goodbye to nurse aides. They leave so frequently. And then some of them come back. After all it's much easier hiring someone back who has worked here before and knows the lay of the facility..

Still in all, it reminds me of why I am in this nursing home. I couldn't keep qualified, dependable aides coming into my home to care for me. It just got too difficult. I would hire them, train them, they'd work a while, and leave. Then I would do it all over again, and then do it again, and again. It was like hitting my head against a brick wall.

I wish I knew what the answer was to this situation. Talking to the aides is key. I also think nursing home management should work all three shifts and be available to listen when an aide needs to talk.

Re-doing the menus

For a few months Activities has been putting the weekly menus on the wall in our rooms so we can see what will be served. I have to say I never usually look at it. It is on a regular 8.5" x 11" piece of paper. It is used as a working copy and is frequently changed. Sometimes there are Post-it's placed over an old entrée and written in longhand. I thought the menus needed a better look.

When I lived in my first nursing home, I worked part-time for a while coordinating communications. During that time I sometimes did wordprocessing. I still typed back then with one hand. I would do flow sheets, newsletters, and even the menus. They posted the whole week's menu on both units each week. I thought a similar system would work well here. I did not ask the nursing home's management or the dietitian if it was okay. If they do not want them, I will just keep them for myself. I can use them to view the menu on my PC.

As I put the menus into their new format, I realized that I have been eating some of these menu items ever since I moved to a nursing home over 20 years ago. I guess nursing home managers do not feel they have to change menu items very often. They change menus twice a year, winter and summer. But the foods are pretty much the same.

I started looking for vegetarian or vegan recipes. I wanted to see if we could change the breakfast menu. They stick with the old standbys of eggs, sausage, bacon, ham sometimes, triangle shaped frozen home fries, and an egg product that looks less than healthy when you bake it in the oven. They cut the baked egg product in squares. And depending on the day, sometimes they look just awful.

Though it does not taste that bad, it does not taste like a real egg either. I have been eating this type of egg product for probably 16 or 17 years. When I moved to my first nursing home, they did not serve eggs every day and I did not want them. I also don't care for fried eggs. This nursing home never fries eggs. My first nursing home did. But I never wanted to find out  what a fried egg tasted like when it was cold. So I never had a conventional fried egg there.

The scrambled eggs there were not good. One of the cooks did a pretty good job with them but she used a lot of salt. The cooking there was pretty plain. They did have oatmeal every day – which was runny. I seldom ate it.

My breakfast consisted of a piece of whole wheat toast with peanut butter/or two and a bowl of Cheerios. Occasionally it was bran flakes and I put part of a small box of raisins (which I purchased) in it.

Once in a while the cooks used pasteurized eggs and made scrambled eggs for me. It was just something special they used to do. I did not ask them.

So today I went off on an adventure trying to see what else we could have for breakfast other than the same old same old.

I saw that they use chickpeas as a protein source. There is one recipe for baked chickpeas with waffles and syrup. On this vegan's website she shows how to bake chickpeas to sort of taste like chicken. She shares that chicken was her "used to be" favorite food. There are other recipes to bake chickpeas with different flavors.

I wonder if we can convert some residents into eating onion or garlic flavored baked chickpeas – instead of the usual chips, candy, and individually packed pastries they gobble up now?

Maybe after a few suggestions from me and some sampling in planning, we might be able to see if nursing home residents can learn to eat differently.,

My Sunday guilty pleasure

The Sunday paper was always important to me. It became more important after I was disabled at 19. Since our church was not disability or wheelchair friendly in 1967. I stayed home most Sundays and read the capital city Sunday newspaper. Sunday newspapers were always a big deal in my home. My dad used to buy two newspapers on Sundays when I was young. One was from Pittsburgh since he used to live nearby. Years later he dropped that but the Sunday paper was always front and center.

Each Sunday I sat and read the paper the entire time they were gone. Then, usually after a brunch type breakfast, we scattered afterwards and I went back to the newspaper. There is a lot to read in it if you are like me and try to read it all. I liked to read the classifieds, real estate section, and I even read the legal notices. Anything that was written in the paper was interesting to me.

When I went online for the first time in 1997, I was surprised what was available. The World Wide Web is very important to readers. There was always so much to read there even before e-books had such a presence. I knew it would make the world of reading much more accessible to me.

At some point I ended up on the New York Times website. Back in 1997 I did not have to have a subscription to read what was on the New York Times website. I suppose they did not give us all of the content and maybe some of it was old, but I read it anyway. Most of the newspapers and magazines back then could be read for free online. But I knew the day would come when they would not be. And that day happened. All of a sudden I could no longer login to read at the Times.

I knew my sister had a subscription to the newspaper. I asked her if she had a subscription to the online paper and she shared her user ID. So, each Sunday after I come back from breakfast, I sit at my desktop PC and read the New York Times.

Some Sundays it is filled with all types of stories. Some days I go back to it in the afternoon hoping to read all of the good things out of it. However, there are Sundays when it seems there is not as much news that I want to read. On those Sundays, I still read the headline stories, the editorials, the health section, the book section, and lately because of the Trump Administration the opinion section.

I learned much reading about life in New York City. I love reading about the entertainment industry there. The restaurant and style sections enlightening. It's a way to keep up with pop culture without traveling.

I used to print out articles and give them to the nurses to read, or particular aides. Some of them were heartfelt nursing or physician stories. Others were just about good books that particular staff might be interested in reading. After all, a thrifty person can get many books at the library in hardcover, or paperback. Not everybody is into PDFs and e-books like me.

I always enjoy reading stories about disability and nursing home life if they appear in the New York Times. But I do miss the passing of The New Old-Age Blog which used to appear every Sunday.

I look forward to going to the New York Times website on Sundays, and sometimes more often, just to see what they're writing about that day.

Another strange weather day

Yesterday it was a balmy 77° in this part of Ohio. That is such a rarity in February. But we are into our second week of pretty good weather.

I knew we would pay up for it. The weather said a storm was due, maybe even a thunderstorm. It came with a vengeance last night after supper.

I was using my laptop as the initial flash of lightning and crash of thunder arrived. I had closed my eyes a bit. At my condo there were many power failures. The same was true at my first nursing home 18 miles away. I never used to be as afraid of storms as I am now.

As the sky flashed, I tried to read and ignore the storm. Before long my nurse came in and gave me my meds. A few minutes later the aides came in to get me ready for sleep.

It was before 9 PM and I was still wide awake. The storm was to blame, I just could not relax.

My night's sleep was interrupted. While my earplugs blocked the noise, the lightning still flashed. I could hear the dull thud of thunder rumbling the earth.

It was not an easy night to sleep. The heat was on pretty high and my air conditioner stayed on all night – though it was on low.

I think I got to sleep sometime after 1:30 a.m. I was frustrated and tired but could not relax and sleep.

I found out during the night that the storm lasted 2 1/2 hours.

As I went to the dining room for breakfast, I looked out the front door. The western sky was purplish black as far as I could see. There was quiet, I knew a storm was approaching. Any minute I thought I would see a funnel cloud touching down. Even though that was a scary thought, I could not take my eyes off the sky. I sat in the back dining room and watched it. Its blackness was intense.

At breakfast I heard another resident say the storm interrupted her sleep.

When I came down to lunch, it was snowing hard. They were large flakes blowing sideways and coming down quickly. The temperature was about 30° – quite a drop from yesterday.

I sat in the back dining room and watched the snow swirling at an angle. Even though there was a lot of it initially, it disappeared when it hit the warm ground.

This building is unbelievably hot today. The maintenance man had to stop in to adjust the thermostat. Some of the residents must have been very uncomfortable.

My room is so warm that I have a fan blowing on me. However, the weather outside is cold.

For this February Saturday the weather was the story.

A glorious 72° day

We do not usually get many February days when the weather is like this. However, February 2017 has been outstanding weatherwise. Though this balmy whether may be caused by global warming, I remember similar February days from my childhood. Although, we did not have many warm days in a row – like this year.

This morning I had to put on lighter weight clothing. The temperatures are supposed to take a little dip after today from a rainstorm, maybe even a thunderstorm. But it's not going into the 30s at least not for a while, unless something changes.

At lunchtime I hung out in the back dining room until my tray was served. They opened the door and a lovely breeze came in from the sunshiny day outside. The air smelled clean and wonderful. It's really rough being indoors all the time. Last winter I think I went pretty much three months without a joy outing. Oh, I got out for a couple medical appointments. But I did not go out for a meal elsewhere or for any shopping or looking around. That makes life seem so dull and uninteresting.

People who are able to walk do not appreciate how easy it is for them to go outside when they want. Disability can change all that.

At Resident Council yesterday the aides said the residents wanted to go to several different restaurants to eat. They also want to go out for lunch more often than once a month. They brought up bowling as something else they would like to do. In fact, they discussed things so much, that they did not set up the restaurant for "lunch out" for March.

Everybody wants to be doing something different. But residents need to be supervised to go outdoors. There are only a few that can go out on their own.

I, of course, need assistance with things. So I would need an aide, family member, or friend to go out with me in this urban area where the nursing home is located.

My previous nursing home was in a rural area. I could go outside and use the service roads to go around the building and then come back. It was a nice little jaunt that made me feel I got my dose of fresh air.

My air-conditioning is on and has been most of the last few days. I even left it on all night last night. The facility still has minimal heat on in case there is a dramatic cooldown. So, they will not be able to save on the budget as much as if they could turn the heat off completely. Ever since Monday we have not really needed heat.

It's interesting how much this beautiful day raised the moods of the residents who live here. Some ate outside on the patio at lunch. It was unusually quiet for a Friday.

To me, today kind of proved that weather is a factor in our mental health.

The new screen gives me hope.

I remember coming to this nursing home over six years ago. Being involuntarily discharged is horrible enough, but moving 80 miles away is a life altering experience.

This town is a county seat and so is of moderate size. When we came through the downtown area and just kept going, I wondered where this nursing home was.

When we made a turn, I noticed that some of the homes were not kept up very well. I thought I was going to the "little nursing home in the ghetto".

I have to admit when we pulled into the driveway of this one floor building I looked at it with wonder. Then I noticed there appeared to be lint on the window screens. It was a beautiful late September day and I could dally a bit looking. It's not strange to see lint close to maybe one window in a nursing home. But seeing it in most of the screens was strange.

After a few days here, I looked around. There isn't much of anywhere to look out except outside the back dining room where there are larger windows which face the street. Since I cannot eat by myself, and must be fed, I cannot go onto the patio during a meal. I really don't think I've been out there ever. I just sit near the door and look out the windows.

Outside my room there is a small window that faces the front. There is also a door that is an egress but only for people who ambulate. You see, there are several stairs. I wonder why that was not re-landscaped and ramped a long time ago. It could even have a deck with a bilevel wooden ramp. I guess somebody isn't thinking. I know everything costs money. But just think how nice it would look and how functional it would be.

As I looked out that window, six years ago that first weekend. I noticed there were tears horizontally in the bottom of the screen. There were also other spots that looked like maybe an outside cat had scratched at the window. I remember I sat there trying to figure out who or what would've made those marks in the screen. I didn't think it was from birds. But you never know.

Since I have to wait usually for care from the aides, many days I stitched that tear in the screen up with embroidery thread in my mind. I wondered if anyone thought of that. We could have almost made a project out of it. Residents could have used embroidery thread tied in different ways to repair the screens. Oh I know that's weird – but it's also funny.

Today something strange happened. Someone decided that the screens needed to be replaced. I don't know if they just put new screening in the old frames, or bought all new screen panes.

I was so surprised when the maintenance guy walked down my hall, opened the window, removed the old screen, and put in the new one.

I went over there and sat by the window. I realized I can see out better now. There aren't little gaps, lines, and holes in the landscape now.

It's great to see improvement, even if it is slow in coming. When I saw that new screen going in, it gave me hope.

The temperature in my nursing home room

When I first went to a nursing home to live in 1996, it was very well air-conditioned. That first summer I thought it would freeze sitting indoors all day. I actually had to go outside for a couple of hours when it was 90 or above to warm up. I went to the back parking lot, sat in a no parking zone, and took a nap. When the shift changed at 3 PM, the aides thought it was so funny that their cars never woke me. It was warm, sunny, and I was alone and quiet. It was mesmerizing and sleep inducing.

But over the years I took less medicine and the air conditioning in my nursing home room did not work as well. It did not work as well in the common areas either. Of course, that nursing home had an older population. Many of them took blood thinners and other drugs that made them cold all the time. I'm sure they enjoyed the warmer temperatures. I, on the other hand, was roasting.

At least in my room there was heating and air conditioning that was adjustable. When I first went there, the thermostat was locked. They had to call maintenance or a nurse to unlock it to turn the AC up, on or off and the same with the heat. After waiting too many times too long for someone official to unlock the thermostat, I told an aide to use a bendy straw to adjust the thermostat. It worked like a charm. I even told the maintenance man about it. He said it was okay because he knew I would not abuse it and make it really hot or really cold. Adjusting the thermostat only affected the temperature of the room. But there was a lady next door who kept her room over 80°. She was older. But I don't think that temperature is healthy for anyone. I had to start using a fan to keep my room cooler.

Over six years ago I moved to this nursing home. Here there is no heater/air conditioner under the window that I can control. We have heat or air conditioning through a ceiling vent. I also had to purchase a window air conditioner because it was so hot in my room that first spring. It's a good thing somebody warned me that this nursing home would not be cool enough for me. I would've been so miserable.

This building may have been built in the 60s or 70s and it probably needs totally remodeled. It's definite that they need new air conditioning units and maybe air handlers.. These ceiling heat vents are something that came out in the 60s because I can remember some friends of my parents having homes built with these atypical ceiling vents. I was used to gas heat and forced air registers on the baseboard. That let the heat rise which makes a certain amount of sense.

The first spring and summer here were so hot. Going out into the common areas is brutal on a really warm day. Some summer days I never left my room. I ate breakfast in the dining room and had a protein bar for lunch and something light for supper. It was certainly too hot to be outside this room. I cannot eat very much when I am too warm on a hot day.

We are having an seasonably warm weather in February 2017. Today its warm in here for some reason. The outside temperature may be in the 50s but the ground is warmer outside which makes a difference. If it doesn't rain and cut some of this humidity, it gets very stuffy in this building. My air conditioner is on. When I use my laptop, it really warms up the area around me..

I also have a table size fan (that can go in quite a high-speed) on the other side of the room for cross breeze. I have it on blowing towards my laptop so that it will move the warm air hopefully away from me.

If anyone who builds, a contractor, a facility developer, or anyone in planning reads this post, please consider well how you do the heating and cooling in  any building for people with disabilities or the aging population. Please make it so residents or their caregivers can easily adjust the heat up and down. It's also nice if the windows open and the screens are maintained so they do not have tears or holes which could allow bugs to get in.

If the owner of my nursing home had to sit in my room and do his work with its present ventilation and no air conditioning, I don't think he could do it.

Two hours alone

Every afternoon I spend roughly two hours alone while the residents are getting ready for, eating supper, and participating in smoke break or other things that go on right afterwards.

Oh, I know I could go to the dining room and eat supper and be involved in all that. It's all right too. But I'd rather spend my time in bed, with my feet up, using my laptop and being entertained.

Therefore I get a drink at 4:30 p.m. and sometimes wait until after 6:30 p.m. to get my next one.

What do I do about dinner? I eat, but less. Sometimes I eat some of what's on dietary's supper menu. But most of the time I don't.

Doing this I have lost 65 pounds. I weighed 214 pounds when I came to this nursing home on September 24, 2010. Now I weigh 150 pounds. But it looks like I'm kind of stuck there. I have dropped another 3 pounds and gone down briefly to 147. But it seems inevitably it goes back up to 150. My goal was 140. Why can I not get there?

I think down deep I'm a little angry that I'm by myself for so long. I don't like being bothered. I don't want somebody in here every few minutes. But I would like to get a drink and I can't do that without assistance. Maybe it's just the idea of all of it. I think I'm a little nosy and like to know what's going on. In my room I am quite removed.

But, people in other circumstances than mine (living in a nursing home) might actually skip dinner and keep doing what they're doing until they stop, and then get something to eat. That's not ever my option. My day is pretty much like the day before. The menu changes but that's about it.

To me reading, writing, watching videos, or movies is preferable to eating something in the dining room I call "the great hall of the people".

Do I wish there was more staff (specifically aides) in my nursing home? I certainly do. I would like it if everyone did not feel rushed to get out of my room.

When I find an aide who wants to stay in my room and find things to do. I wonder what's wrong. In my nursing home years I have been accused of trying to detaining aides in my room by talking to them. I always wondered why directors of nursing never thought that an aide might like to spend time talking to a still relatively young woman who can actually put a sentence together and laugh at a joke. I guess they never thought about it.

It's hot in my room today. It's been unseasonably warm in this part of Ohio this week. It's supposed to reach a peak of 70° on Saturday. I'm sure we're in for it after that – weatherwise. But it does not look like it. Daytime highs in the 40s are due next week. Still, a therapist told me snow is due. I don't care it is February after all. I have seen some heyday storms at the end of February and in March.

So I have the air-conditioner on but not for very much longer. It gets really warm in this building when the sun comes around on the west side. It heats up just like a furnace. But as soon as the sun goes down, it cools. I know they still have a bit of heat on in the building. You can't really turn it off in February – not quite yet.

Maybe someday a robot can answer my call light or check on me. A robot will not have have any type of attitude. A robot will not be able to tell whether it's a long day or a short one. Do you suppose we would get tired of a robot always speaking to us in a monotone without an inflection?

I'm going back to my laptop. Most days I find some really good things there. Many days I just escape by reading a book.

Getting a hair trim

For 14 1/2 years I lived in a nursing home that had a beauty salon. For a while we had a cosmetologist come in several days a week and do the residents hair. Many of the ladies went every week. Of course, I tried to make appointments. Sometimes that did not work out. At times I went out to a salon when I had the ability to do so.

But usually I could work something out. I used to get my hair colored every two months or so and usually between the cosmetologist and the aides it was colored. Not too much of my gray was ever showing.

I moved to my present nursing home over six years ago. There is no salon here. So ever since I came I have been going out to get my hair cut, colored, or permed. I would go to regular beauty salons. At times I went to the beauty training academy here in town. They have lower prices but it takes longer. However, at times, I enjoyed a day out getting prettied up.

Perms are always a pain at the academy. If I wanted to get a short, curly perm, it could take up to five hours. There was a lot of waiting involved. Usually at a more pricey salon it took less time. I started to wonder if getting a perm was worth it. I thought the same about hair color.

For a while this nursing home had a licensed cosmetologist working as an activity assistant. So she could cut, color, and perm our hair. She did not charge a fee but we provided whatever she needed i.e. perm or haircolor. But, no one could run it in the ground. So I tried not to color too often. That made me self-conscious. Sometimes the activity director (who is not a cosmetologist – licensed or otherwise) would cut and color my hair. She just happens to be good at it like some people are.

Over a year ago the activity assistant/cosmetologist left. Since then, the activity director periodically cuts hair.. Sometimes the residents can look pretty shaggy before she gets to them. There are about 48 residents here. That's a a lot of hair to take care of.

There is one older male resident here who has not had his hair n many months. He his balding on the top but the back is flowing in semi-curled locks down past the nape of his neck. He has a bit of dementia and still thinks his doctor, located in another town, is going to cut his hair. So, I wonder how long it will get before someone talks him into getting it cut..

We have a female resident who came here with pure white cheek length hair. Now it is way down past her shoulders. I don't think it's been cut for two years. Maybe she likes her hair long and it was cut because she was coming to a nursing home. I don't know. But I would think getting it cut would make her feel better.

It's too bad no one can donate haircutting services to the nursing home residents. But I guess no training school or beauty academy can do that. These people could not afford much to get a haircut. That is why it is almost impossible to find a cosmetologist who would come in here and do it. We might be able to get a student who just graduated from a beauty school to come in for a known amount – say $100 for as many as 10 or so haircuts. But I don't think residents could afford much more than $5 a haircut. They only get $50 a month if they have Social Security Disability Income. If they do not, they get less.

I say this because I went out today with my sister and got my hair trimmed. I don't really like to do it when my sister's here. But since that is an opportunity to get out, I had it done. I have to say I feel so much better. My hair looks and feels better too

It's too bad that other residents here cannot have the same experience.

A bad nursing home Sunday

Sundays are not good days in nursing homes even if things go well. When things don't go well, they're worse.

It's just past mid-February and we have had a lot of call offs and no-shows lately. Those who call off are not usually sanctioned. But the no-shows will be fired eventually unless they are very contrite. The problem is at this time of year the flu is going around. So they can say they are nauseated or vomiting and get away with it – for at least one day.

We have a lot of young aides in their early 20s and they like to party at the bars on the weekend. This usually happens every weekend. But the weekends after the end of January when some of the aides have already filed  their income taxes early, are just trying to get through the wait until their refund arrives.

Sometimes I think they forget that every dollar they don't make during February 2017 is one less dollar (give or take), they might get back next February 2018. But I don't think that ever crosses their mind. They live for payday and there is not much after that.

I don't know that they think about the consequences to residents like me who need assistance with mostly everything and have to wait a lot when staffing is short.

Because of short night shift staffing, I could not get up until after 7 AM. Then I was in the bathroom, on the toilet, with the call light on, waiting for assistance from the dayshift aides.

I was already starting late. Breakfast is at 8 AM. I wondered where the heck my aide was.

I waited and I waited and I wondered. Once in a while it crossed my mind that I may get stuck with no one to wash me up, get me dressed, and find a couple of other aides to transfer me into my power chair. Those thoughts do come into my mind. But I try to put them at bay. My mind tells me they are unreasonable. But I live in a nursing home and sometimes crap happens.

I know I must've waited 15 minutes. I kept thinking and wondering what they were doing.

Then, my aide came wandering in. I was hoping she would be a house a fire. But I think she was actually feeling challenged. Maybe she was afraid I would get upset. I am rather high strung and waiting can be a bit much for my anxiety level.

So, she washed me up, lotioned me, and got me dressed. While she was doing it she told me there were only two aides for over 45 residents.

Yikes, that is a bit scary, even to me.

Will higher salaries cause aides not to call off? They might, but I doubt it. Maybe you just need to hire weekend aides. Then they would be people that work weekends all the time. I suppose you would have to pay them more. But they would have four or five days off in a row. That would be like having a vacation I would think.

Maybe someone needs to think about that. I know I have many times. I would like a solution.

About me writing

I have been writing about my very unconventional life for quite a long time. I have done a lot of writing and I should have a book completed by now. I have several started but none of them is finished.

I do so admire people who can write books. I think they must have so much discipline and dedication. To me it's really hard to write about myself. So I don't really understand how people can do autobiographies themselves. I understand how famous people do it because they have ghostwriters. But what about other people who really write their autobiographies.

Anyway I think fiction must be easier. Maybe if you're trained to be a writer and get a Masters degree in Fine Arts you know the technique of fictionalizing your own story. Maybe that's what I need to do. Maybe Stephen King has told many of his own stories in a quite scary way. I'm sure he has told us a lot about himself in them. He has told us what he's afraid of.

Maybe getting out all your negative and scary thoughts onto paper or into a word processor is somehow liberating. But I would think you would still have nightmares. I'm just now getting to some of Stephen King's scarier books and I have to say that some nights I have nightmares about sections of them. I think the uncertainty gives me the nightmares more than anything else. I wonder how he is going to weave this tale and where it's going to go. That keeps me reading. Curiosity keeps me going. But his stories are interesting and he writes them in a fascinating way.

They say he writes great dialogue – and he does. But he didn't have to dictate. He may dictate at times and then have it wordprocessed, so he can proof it. But I would not want someone else in my story. I also wonder how many people read his work as he's writing. Or maybe he waits until he's finished to let them read it.

Anyway, back to my writing. I don't know what I want this blog to be. I started one here in 2005 and I was trying to make day-to-day life in a nursing home funny. I realized on some days that was very difficult to do.

I also was concerned about not having an editor to look at what I was writing. I figured anger would come out and it might turn some people off. I don't want to be judgmental about things but when your life is limited by circumstances you can't help but second-guess just about everything.

I wrote this saga of my power chair hoping that it would help someone. I left out names of the vendors and manufacturers on purpose. I don't know if it would  be helpful or hurtful to know that information. I also do not want to get sued.

Despite all the other things nursing homes do and are, I have stayed alive living in them for almost 21 years. I guess that says something about nursing homes and my ability to advocate for myself.

I hope you will come and read along and enjoy the adventures that I put here.

Power chair process postscript

Power chair process postscript

I would like to think that I could have gone back to the beginning on this power chair ordering process and maybe changed things. Now I know more about the manufacturer of my power chair. But I would expect that I could only find criticisms of manufacturers of power chairs on the Internet. I don't know that they would be much praising. The folks who were happy with their power chairs would be too busy running around in them to write praise letters. People write when they have a problem.

I also think it would've been helpful if my sister lived closer. Perhaps she could have shown up to one of the vendor meetings, or have been here the first time the power chair came into the building. I would have liked for her to have seen it and compared it to my old one. Perhaps the vendor or his tech would have felt like he needed to justify why the chair was set up differently. I don't know what she would have said if she had seen all the extra parts on the new chair – that I could not use.

I wish there had been a Medicaid Durable Medical Equipment booklet for the potential consumer (me) to read. If I had been older or cognitively impaired, I would not have been able to ask the questions that I asked. Nevertheless, I did not get what I thought I was getting. Maybe I never was going to get anything close to what I was using. Although, that is what I was told. I think I was told that so I would agree to a chair being ordered. Because the first vendor could not describe how he would adapt the new power chair's joystick similar to my previous one, I would not agree do a chair being ordered. I know that's why he stepped out of the process. He knew I was not going to be a pushover. Instead, he labeled me as difficult.

It's very hard for nursing home residents because the nursing home is bureaucratic. Their ordering processes are known only to them. I was not able to get any information. I never got any feedback from the director of Medicaid in my state. He could have answered me. Or, he could have had one of his underlings answer me.

I don't want to really blame anyone. As I said, I think everyone was trying to get me a chair that would work. We just had different ideas of how to do that and what would work.

There is no doubt that only getting limited time outside the facility has made me wary of a lot of things. Inside the nursing home, I have little concern about making my power chair go particularly fast. And the vendor made sure that this chair will not go as fast as I would like. I have to manipulate my left hand in a different way in order to build up speed. Either that, or I need to have someone move my hand forward more so I can apply more pressure.

***

This is the end of my saga of getting my new power chair adapted for my use. After I finally had the joystick in a better spot, I felt like someone should give me an award. But alas, there was no one there to do that.

I just had to keep on keeping on.

***

I'll be back with other postings.

Joystick FINALLY in a better spot

No one really knows quite how small you feel when you live in a nursing home and need something done with your equipment.

The joystick was now adjustable. How much I did not know. Jason (manufacturer's rep) didn't have the time to show me how to use the adjustable part. That was a major failing on my part.

I emailed the regional ombudsman about the joystick needing to go up approximately one half an inch. She said she would contact Nan, the therapy manager. I didn't quite understand why she was doing that. Therapy had made no adjustments to my chair. I had no idea that they would. Although, I realized it would really be helpful if they did.

About four days later I was in the front lobby when the therapy manager I will call Nan came in the door. She said she understood that the joystick on my power chair needed to be raised up. I told her that was correct. I asked her how that could be done. She said she would need an Allen wrench. The ones she had in her hand did not work.

I told her I had some in my backpack. She looked at mine and said they were the wrong size. I was surprised because that was the size I had been carrying for my old power chair. I thought they were all sort of standard. But I realized I did not know everything.

Nan left and said she was going to talk with the maintenance man. A few minutes later she came back with two sets of Allen wrenches. She found the right one (a 3/8 inch) loosened a couple of fasteners, raised the joystick about a half an inch and tightened it.

Then she asked me if that was all right. Because the joystick was a bit higher I needed her to pull my arm forward to reach it. That took away some of the charm of it because I could not reach it by myself.

I sort of felt like I was backing up. I was now raising the joystick closer to the range where the vendor's tech had put it. I felt frustrated.

Nevertheless I thanked her and she said to email her, since I now had her email address, if I needed anything else.

***

In the meantime the power chair users forum still wanted to know how things turned out. For some reason they said I was just lucky to get my chair fixed. They told me that most customers who get the wrong set up in a chair just had to live with it, or use it that way.. I sensed they were a bit angry with me.

I assured them that I would write letters to all the same folks I wrote before about my power chair's problems. They said we needed system change. I planned to mention that.

I felt a nursing home needed to give more support to a resident when he or she got a new power chair. I wrote a one page letter and those were mailed – regular mail – after the first of the year. I did that so we could avoid the postelection and December holiday rush..

The chair is still working for me. It is still an adjustment. Do I wish it had been done better? Yes I do.

Joystick needs to be UP one half an inch

So after Jason (manufacturer's rep) worked so hard to get the old joystick bracket off and the new one on, I finally got a lower joystick. It made me feel much more confident. The problem was it was not in the same position as the one on my last power chair.

But I was pleased I was not running into things. It also seemed like I had more control. But my wrist and arm were starting to ache a little. I had gotten very used to having my arm sitting up high on the new joystick. Now my wrist was hanging down like it used to – again.

In order to figure out how I was doing running the chair,, I actually already had an outing planned. I had to go be fitted for new leg braces that go inside my shoes. It has probably been 14 or 15 years since I got new braces.

I digress to tell that story.

***

For years no orthotist (person who makes braces) has suggested I could get new braces through Medicare. My need for braces was pretty much the same as it was when my old ones were prescribed. But, before the last ones were prescribed. I had surgery. I have had no surgery since. Each year I just got new Velcro strapping and new hardware (rivets and fasteners) put on my braces.

Then last September a rivet broke in my brace for my right leg. I called the orthotist, explained that I was going out, and asked if I could drop the brace for him to fix, and pick it up later. He agreed and my friend Mike dropped it off. When we returned later he told me the old brace was worn out and that I needed new ones. I told him I have heard over the years that Medicare would not pay for new braces unless I could walk 10 feet. He said I just needed a prescription from doctor and I could get new braces every five years. I told him I would get back with him.

On my doctor's next visit I asked him if I could get a prescription for new braces. He said he would call the orthotist. He did and the prescription was written. On November 11, 2016 I went to the orthotist and was measured for new braces. I was told it would be into December before they would be ready.

I made an appointment on December 7, 2016 and decided I would have my friend Mike take me. I was able to book him early and we were ready for that excursion.

***

Coming back to the original story:

Mike and I were on our way get my new braces fitted. I did not know if I was ready to go anywhere using the new power chair in another different way. But I had no choice I had to do it.

We went to the appointment first. It was cold that day. I had to get Mike to run the chair a bit for me because I was freezing and my left hand was so cold. It was windy in the little complex where the orthotist's office was. We were probably there almost an hour and I had my new braces on. I was told to wear them two hours and take them off. I told the orthotist that would not happen. I said I would have to wear them all day.

Mike and I headed out to Walmart so I could shop and roll around to see how I would do. I was getting frustrated because I had to drop my arm to use the joystick. The armrest was not high enough to allow gravity to drop my arm quickly. I had to have Mike constantly reposition my hand so I could reach the joystick. I suppose my tendons shortened up using the joystick the new way – for so many months.

The day was a bit frustrating. But it still was not as bad as having my hand sitting on the joystick.

Mike told me the joystick needed to be raised about one half an inch. I so wish there had been an easy way that Mike could have done it.

Instead, I came back and let the regional ombudsman know what was going on. I told her I just did not know exactly where to have joystick placed lower. I explained that using it a few days showed me it was too low.

She told me she would contact Nan, the therapy manager. We never discussed how any adjustments would be done. I thought maybe Jason (manufacturer's rep) would have to return.

In the meantime, I waited.

Joystick bracket installed and lowered…

I was starting to feel that getting the new bracket for the joystick installed was going to take forever.

I never really thought I would get the new joystick bracket before, or right after, Thanksgiving. It's good I was not anticipating a Thanksgiving gift of the bracket being installed because it didn't happen.

The regional ombudsman checked with me every week. Then I was told the manufacturer's rep (who had worked with the vendor) would come in on December 1 and install the new bracket.

I was busy working away at my desktop PC when Jason (manufacturer's rep) showed up that morning with the nursing home's therapy manager.

Jason thought it would be easy to remove the bracket and install the new one. Well, that's what he thought until he tried to get the old bracket off. He could not loosen the fasteners. He was using an Allen wrench and getting red in the face. He explained to me that he might have to break a fastener in order to get the old bracket off.

I told him that the vendor's tech said they used Loctite on  the fasteners in. Jason said that Loctite should never be used on aluminum. He also said locking fluid was not even necessary.

It seemed like it took him an hour to get the old bracket off the power chair. He definitely broke it.

I told him he might want to remind that vendor's techs NOT TO USE locking fluid. He assured me he would.

He put the new bracket on quickly. I couldn't believe they actually had a bracket that was adjustable.

Then Jason asked me where I wanted the joystick positioned. For so long it was impossible to reposition it and now I had to decide exactly where I wanted it.

I had him move it down. I was trying to stimulate where the joystick was on my older power chair – which was my only frame of reference. But, I was having a hard time. I hadn't used that old chair since early June.

He put the joystick in the position where I thought I could reach it. I showed him that I could move my arm away from it without lifting my arm. I felt much better about that.

I went out in the hallway and tried it. I asked him if I could have some time at least a week or so to try it out. He said that would be fine. But, he did not give me his email address. Instead, he told me to email Mr. M through the manufacturer's customers forum. I told him I would do that. He said I could also email Nan the therapist here at the nursing home.

I thanked him for helping me out.

It'd taken so many months to get this done. It's terrible to say that it almost seemed like an anticlimax.

As I headed to lunch, I realized I would be using the joystick in yet another different way. But, I could operate the chair and I was so glad my arm was not stuck sitting on the joystick.

Within a couple of days I realized that the joystick would need to be raised.

When I am one out with a friend shopping a week later, he told me the joystick needed to come up one half an inch.

I kept using the joystick. But I said it needed to be raised. The right place for the joystick was only one half an inch higher.

Waiting for the adjustable joystick bracket

I was pleased someone had listened and that the meeting was scheduled. I was pleased that the manufacturer's rep was a person who was willing to take charge.

After all, she had made sure that the controller box was moved to a more secure location. I will never know why it was on the top back of the power chair. I think "they" thought it would be easier for a caregiver to watch the speed and turn it off. But, that could have been explained to me. Instead, they sort of made it seem like it was a random occurrence.

A week passed and I heard nothing from the manufacturer's rep. But I did send an email to the CEO of the company. And an assistant of his contacted me. She said she wanted to make sure that they fixed the joystick so that it was in a better position. I knew that the folks on the power chair users forum had been on the manufacturer's forum and made requests that I be assisted to get my joystick in a better position. It's amazing how no one wants bad PR on the Internet.

On November 14 I had gone down to the back dining room before lunch. I was a bit early and went to my table. No one was there so I went to the back dining room to talk to another female resident. Then I went back to my table and sat with my chair still on. I was watching residents come into the dining room. All of a sudden my chair started moved forward just a bit. I thought a resident had bumped me and it pushed the chair slightly forward. But I looked around and saw no one. I still felt I was moving forward. All of a sudden my right wrist pushed against the table and became stuck. My chair kept moving. I thought it was drifting.

I tried to pick my hand up and get it off the joystick. I thought maybe my hand was spasming. I could not move it. I called to my aide and told her I needed some assistance. I told her to shut the chair off, put it in freewheel mode, and back and up. By that time, I was partially upending the table away from me. The table was being pushed into a wall that jutted out beside it. All three glasses of water that were sitting on the table – fell to the floor.

My aide grabbed the joystick and backed me up. At first the chair didn't respond and then it moved backwards. When the chair stopped, I had my aide turn the chair around.

I felt like all the blood had run out of my face. My mouth was parched – so dry. I got a drink of water, took a deep breath, and turned around and moved back towards the table. My aide was watching and I made sure she turned off my chair when I stopped.

I told my nurse that I felt the vendor needed to be called. My right wrist had been jammed between the table and the armrest of my power chair. It was really hurting. I told her I might need an x-ray.

My nurse quite tersely told me she would not be contacting the vendor. That kind of startled me. I never said another word about it to her.

Mr. M the disabled power chair user and an employee of the manufacturer, answered my email and said that my power chair probably changed modes and that's what caused the crash. He never said how it could be fixed. I thought Mr. M should have made sure a tech came here with a little computerized device they use to adjust speed and sensitivity and check out my chair. I thought we should know if it was changing modes and whatever was causing it should be fixed or changed. I thought changing modes could be dangerous. But, it was never mentioned again.

Postscript:

My thoughts were rambling as I wrote this. I tried so hard to make this new power chair work. I hoped the manufacturer was going to work with me. His intermediary, the disabled guy, Mr. M, who had his name on the wheelchair forum, saw my postings on the manufacturer employee website and answered them. But I had the feeling everyone just wanted me to go away.

For many months trying to get the chair re-adapted had been so much work. I kept in constant contact with the vendor and the facility. Everyone knew I was having a problem. Part of it was communication but some of it was that the vendor and his tech probably both thought I would get used to the chair. That is what happens. You get used to things after so long. But I was pretty sure this joystick issue would not go away. I had no options. I had no way to mock up a different joystick set up to see if it would work.

I was trying not to be judgmental. Mr. M, the wheelchair guy who worked for the manufacturer was so concerned that I was a bitter, disabled person.

This disabled woman thought her new power chair's joystick should be more adjustable. It needed to be lowered and there seemed to be no way to do that. I knew in the future it would be helpful to have the joystick be able to be adjusted – especially if my needs changed in the future.

And so I waited.

Letters sent and results of the meeting

The power chair users forum was busy with the back-and-forth between me and them. I needed moral support badly and they helped.

I was getting ready for the meeting scheduled in early November. But I decided to send those letters. My sister wondered why I did not just wait until after the meeting. I told her I wanted to ensure that there would be a meeting in case it got postponed.

I was told the meeting would be November 2, but I was not told what time. I normally lie down before 3 PM and put my feet up to read, watch videos, watch a movie, a TV show, and always to write. But I found out early in the day that the meeting would be sometime around 2 PM. The regional ombudsman showed up first. She and I talked. I told her I was very nervous. I did not want there to be any type of confrontation.

We went down to the back dining room here in the nursing home sometime after 2 PM. We sat there for an hour waiting. We were told that one of those attending was stuck in traffic. Then we learned it would be after 4 PM before we could meet. At that point I was getting thirsty. I asked the therapy manager if she could get me some water and the small tabletop fan from my room. It was quite sunny in that back dining room and it was getting pretty warm. I was also getting tired.

The vendor tech showed up and the therapy manager from the nursing home. It was rather difficult to sit around making small talk. I knew from the state Attorney General's office that the vendor felt he had done what he needed to do for me. The tech told me that the vendor was at the World Series game in Cleveland. It was game 7. I knew right then that the vendor would not attend. But the vendor and his tech had extra work on the power chair because the joystick broke. Since I did not feel that was my fault, I did not feel guilty. Nevertheless, I sat there quietly and did not add much to the conversation.

Around 4 PM the manufacturer's rep showed up, I was surprised she was female. She told me she wanted to make my chair more convenient. She had apparently read my emails because she mentioned things point by point. She addressed the fact that my lower backpack had been mistakenly wired on. She came right over, unlatched the left arm rest, flipped it up, and removed the backpack. Unfortunately, I was not at the right vantage point to see exactly how she did it. The manual that comes with my power chair does not demonstrate how to use the armrests. I just wondered why no one in therapy could get that armrest up and free my backpack.

The manufacturer's rep then said she wanted to move the controller from the upper right back of the chair to behind the right armrest. I have to admit I was surprised. I had been asking for this since the second time I was in the power chair. She said she could see that it would no longer be in the way. It was quickly moved. A smart phone photo was taken to show me its new location.

Then she told me that a different bracket would be ordered for the joystick. She said that bracket would be adjustable in every direction especially up-and-down. She knew I felt the joystick was up too high. The other manufacturer's rep (who worked with the vendor) said when the bracket came in, he would schedule a time to come and install it. 

When I asked when they thought it would come in, they told me they were not exactly sure. I thought it might take a week or two. 

They did not address the bracket which is on the back of the power chair that sticks out pretty far. It was put there for the controller to rest on. Now there was no controller. But no one suggested removing it.

The meeting ended right before 5 PM. We had to get out of there because the nursing home residents eat at 5 PM.

I was glad some of the things I thought were problematic had been worked out. But I wondered how long I have to wait for the new adjustable joystick bracket.

Mailing the letters

During September and October, when it looked like I would not see the vendor or his tech again, I emailed the regional ombudsman and told her I really wanted the joystick adapted further. She did not know exactly how to do that but was supporting my effort. It seemed like the nursing home staff did not know what to do. I was lacking in function and it did not seem that the vendor felt he could or would make the joystick easier for me operate. I did not think it was anyone's fault. The nursing home therapists knew what my old power chair looked like and how the joystick was set up. They knew the new one was different. I so wished there was an objective third person to look at my power chair and give an opinion.

I just knew that my friends agreed with me. They had never seen me struggle so much to operate a power chair before this newest one. I think most of them felt not all of it was due to me being not able.

I talked with power chair users on the forum and they knew a lot. If I had had the funds, I would have just purchased the new bracket for my power chair and had someone install it for me. The problem was there was is no one in this area that I knew about who could have done it. I could not afford to spend $500 to fix up this chair. By the way, the chair cost over $14,000. And it isn't one of those chairs that reclines. I did not want one of those anyway.

It was interesting because the power chair users forum folks thought that my chair had been set up for another patient. When I explained that it had a head restraint, and oxygen tank holder, and armrests that were not exactly what I needed, the power chair users wondered why. I did also but no one ever answered me.

I didn't want to come off as ungrateful either. The power chair users thought I should write to Medicaid or to the state and federal government. I had already written to my state's Attorney General and I did not get very far.

I think the vendor tech's last visit was because of the call from the state Attorney General's office. The vendor complained that they had made multiple visits here and I still said the chair and joystick needed work. That was true because I did not get what I thought I was getting.

My power chair has five speeds. Only four were programmed. I know they think the fifth one would be too fast for me to use. But, I could use it when I am outside the facility. I understand that no one wants me to get injured and neither did I. But, I was injured anyway using the chair in its regular speeds.

I was working on a letter. I was being ever so diplomatic. I did not want to start trouble for the vendor and for the manufacture. I didn't really know who was to blame. I just thought everybody was trying to do the right thing and unfortunately it was wrong.

I knew the manufacturer, or several of their employees, knew about my blog on their owners website. After it was taken down, I was sure of it. I wrote nothing that was derogatory. I just told what happened.

The disabled power chair user who worked for the manufacturer I will Mr. M was terse with me in a couple of emails. He didn't like that the other disabled power chair users are often militant on their own forum. I explained to him that they came across situations like mine and felt badly for the customers who got a new power chair and then could not operate it. I also heard from friends through Facebook about other nursing home residents getting injured using new power chairs. But knowing I had company in my misery, did not make me feel happier.

Close to the end of October I heard there would be a meeting in early November here at the nursing home. A representative of the manufacturer was supposed to come to that meeting and tell me what they could do to adapt to joystick to be easier to use.

I again e-mailed Mr. M the disabled, power chair user and manufacturer's employee, and told him I understood he had a job he wanted to keep. I knew he did not want militant statements on his Mr. M forum. But I still thought it was good PR for the manufacturer to put my joystick in a better spot.

I worked on the letter. I got the facts on one page and explained my plight. I emailed it to my sister and she sent all the letters certified mail. They went to the vendor, the manufacturer, the governor of my state, my state representative, and state senator. I was very nervous when I knew they had been mailed. I just wanted my chair to work better. I did not want to cause trouble.

I thought my letters might ensure that there definitely was a meeting with all parties at my nursing home in early November.

Composing the letters

I spent a lot of time on the power chair users forum. I kept getting answers that told me to  find someone who could fix bicycles and that person could probably adjust my joystick. That sounded plausible but I was concerned that the vendor and manufacturer might feel that if I changed the chair, I voided their warranty. Even though the users said that was not the case, I just could not take the chance. Besides I did not know who could do such a thing for me. None of the staff of the nursing home were allowed to adjust anything on the chair. It was maddening.

I went back frequently to the manufacturer's consumer forum to see what was going on. As I said, it was difficult to post. Many times the power chair user (employee: whose website was set up by the manufacturer) who supposedly ran the forum, did not get back with me. I started to email him directly.

I was on those forums every day and sometimes many times a day. I really was looking for insight. And, yes, I was desperate.

I kept waiting for the vendor's tech to return to adapt the chair. But I heard nothing on that end.

In the meantime I was getting a little bit of occupational therapy on just my left hand. That's the hand I use to run the joystick. Any stretching and exercising would loosen it and make it easier for me. I just wondered about all this therapy all of a sudden. Getting a month of it to transition to a new power chair was one thing. But getting occupational therapy again after so many months, was quite another.

My birthday was in September. My friend Beth visited before my birthday. We did a little shopping and went to lunch. It was fun and uneventful, there were no crashes. But I was running the power chair in a lower speed to prevent them. My hand was still sitting on the joystick which to me was an unsafe way to operate it.

Then my sister visited around my birthday and we had a good time. We had no misadventures. Oh well, that is not exactly true, I had a little problem on the ramp going into my van. I ended up getting my hand stuck on the joystick and had to go down it backwards – too fast. I knew I scared my sister to death. I wasn't trying to. With my hand on the joystick, I was applying pressure when I did not realize it which caused the joystick to be jumpy. Luckily, neither of us got hurt.

By the end of September I checked online to see if Medicare was paying for my occupational therapy sessions. I noticed that the first two weeks had been denied. That did not make me happy. I did not want to see the nursing home get stuck with a therapy bill. I also knew I was already into my third week and it would be denied also..

I shared this news with the regional long-term care ombudsman. She, of course, told me not to worry about it. But I knew therapy would end. Any therapy is physical but it is also mental. You see that therapist and talk with him/her regularly. I didn't want to get dependent on another person to make me feel better about the power chair. But the OT assistant was not commiserating about the chair. He just told me he did not understand the whole process. I thought to myself maybe I should write a book about my experience so that other therapists could learn from it.

After the power chair users on the forum suggested I write to the "powers that be" that after four months my new power chair still needed further adaptations, I started to rough one out in my mind., Now I just wondered what I would write and if anyone would listen.

All I knew was time was passing.

Another trip to the beauty shop in late October to get my hair trimmed and get a perm reminded me how difficult it was to back that power chair up to a beauty salon shampoo bowl. For the second time, we bagged the controller on the back with plastic. But then, when we tried to take my backpack off of the chair. I actually have two on the back and we wanted to remove the lower one. It was held fast. When the older tech, John put the new joystick on – somehow he ran the wire right through the strap of the lower backpack. We could not get it off. It was so embarrassing!

I had to tell the nursing home and the vendor by email that I had another problem. I also told the power chair users. This whole thing with the power chair almost seemed funny – if you were an outsider. It certainly wasn't funny on the inside.

I started working on the letter. My goal was to make it one page and get most of the story in there. It was a job.

Determined to get the joystick adapted

The tech tightened up my joystick. At least I would not have to worry about it moving. But I still did not think I should have to have a tech come every time my joystick or something else needed a little tweaking.

Over the years since I have had wheelchairs manual or power, I have had other people who could tighten things. When you get a power chair, you usually get a wrench or tool that can be used to tighten up foot rests and other parts on the chair. Then with a power chair I normally went to a durable medical equipment vendor's building and had my chair worked on. Medicaid used to pay the techs to come to the disabled person and repair their power chair. But sometime before 2008 Medicaid stopped doing that. The vendor for my last power chair was about 20 miles away from the nursing home where I used to live. It was easy to go there and they would fix things. They did not charge because I'm on Medicaid. I thought it was part of their after purchase customer service. To me that would certainly cause a customer to come back to someone who had kept their power chair running..

For the last several years I've had to pay for battery replacement in my power chairs. Medicaid used to pay to replace them every year and of course the batteries did not last. Nowadays they will last about two years – which is much better than one – if I'm buying them. Now, my sister will have to assist me to keep my chair running. I do not think Medicaid will. But I don't know yet.

I told anyone who would listen that my previous power chair's joystick was much easier to adjust. We did not need a tool every time we had to move it in or out, forward or backward. There was just a wingnut on the outside of the bracket beside the armrest that had to be loosened and retightened. But, those can get stripped and over time should be replaced. They never were on my old power chair. We just used it the way it was.

The ombudsman asked me if I would feel better using the joystick if I got more occupational therapy. I told her any therapy for me was probably time-limited because it has been 48 years since I was partially paralyzed after a fall. Nevertheless, the occupational therapist did an evaluation and the new male OT, Mike, started doing some work with my right hand only. I thought this was rather strange. But I let him do it.

We proceeded into September and I was getting therapy three times a week. While I was doing that, I was checking in on the wheelchair user forum to see what I could do to get the power chair's manufacturer to make further adaptations to my joystick. The power chair users on the forum thought I needed a different bracket for my joystick. They said the bracket should move in every direction whether or not a wrench was needed to do it. They knew much more about my new power chair than I did. I had never had a chair of this brand previously.

I also emailed the disabled power chair user who works for the manufacturer of my power chair. It was difficult to get my questions to show up on his website (provided by the manufacturer). For some reason it seemed like my posts were being blocked. I thought the monitor on the website was told not to let me post. I didn't post anything that was negative or angry. I was not confrontational at all either.. I guess they just thought it was negative PR and didn't want it.

The power wheelchair users forum where I was posting questions, commented about the manufacturer's customer power chair forum and that the power chair manufacturer's employee (whose name was on the forum) was not being effective in resolving my problems.

I was starting to feel like the tennis ball in a tennis match. The power chair users complained about the manufacturer's customer website and sometimes they complained about me. I sort of felt like, "poor little Nell". I just wanted information and I wanted to get something started towards a resolution. I thought the manufacturer should want to make the chair easier for me to use.

The last I heard from the manufacturer's tech on September 1. He acted like I was holding a gun on him. He was trying to figure out a way to modify the joystick further. But, he also said, he might have to start over again. Although, I had asked if I could get a different power chair, and I was told that would not happen.

I thought getting it adapted further would take some time. But I was willing to work hard for it.

Another joystick adjustment

I tried the chair using the readjusted joystick. Then, the next morning the joystick flipped all the way forward when the aide was putting it into position. It looked like it was going to fall right on the floor. Miraculously, it didn't. It stayed attached but it would move around. It was strange.

I emailed the vendor telling him the joystick needed adjusted. I did not mention that I had been injured again. I got no immediate response.

The next day the therapy manager and an occupational therapy assistant I will call Mike stopped me in the back dining room. Nan, the therapy manager wanted me to meet the new OT assistant. I had seen him around for a few days. She asked how the joystick was. I had her move it a bit and she saw how it would almost flip all the way forward.

Nan agreed with me that the vendor, or his tech, needed to take a look at the joystick and see what was going on. I emailed the vendor several times and got no response.

But I had been busy on some power wheelchair forums online. The men and women on there were giving me suggestions for how to fix the joystick to make it easier to adjust. I really appreciated their input. I shared the information with the vendor. But since he did not answer, I did not really know how he felt.

Nine days after bruising my toe the tech, John, showed up to adjust my joystick. He said he could not get another joystick exactly like the one that came with the chair because they are no longer manufactured. He told me that the smaller joystick could be interfered with by cell phone signals. I thought that was hogwash and the wheelchair forum folks agreed. I wondered if it was still manufactured.. I thought possibly they decided to replace it with something that was less expensive and maybe right on hand.

The tech tightened it down while I was in the chair so I could make sure it was in a better position. John said he had tried very hard to put the new joystick in the exact same position as the old one.

He had brought my old joystick cover. I asked him to please put it on and take the other one that was more slippery back with him.

I told Nan the therapy manager, the regional ombudsman, and anyone who would listen, that I needed a better set up for the joystick.

I began writing a blog on the power chair manufacturer's website. They actually had free blogging for wheelchair owners. I thought maybe someone would learn something from my experience. I did about six or eight postings.

Then, at the beginning of September all my postings on the manufacturer's website disappeared. They had taken down all the postings and removed the blogs. I was referred to a blog of of one of their employees who is physically disabled and uses a power wheelchair. I went there for assistance.

I also wrote a letter to the Attorney General asking whether this was some type of consumer fraud situation. I did not know. But I thought if I was told I was getting one thing and got something different, it might be.

I wondered if that was why my blog on the manufacturer's website was taken down.

I didn't care about all that. All I wanted was for my joystick to be in a better position for me to use it safely.

Joystick adjusted, another injury, trip to the ER

It was the next Wednesday before the vendor showed up to adjust the new power chair's joystick. I was in the manual chair but they moved me to where I could watch him working on the joystick in the hallway.

He loosened up the fasteners on the joystick. Then he put it in a better position for me. It was more towards my body on the left. He also put a different joystick cover on it which was longer and easier to get my fingers around. But it was slippery. The other one was not.

He got the joystick into position and I went down to lunch. I told him I thought I could make it work. I certainly hoped it would.

I wondered why the same tech, John, did not come and put the joystick in the right spot. But, I did not ask the vendor that.

I asked the vendor if we could do anymore modifications to the armrests to raise them. He told me if I wanted the armrests re-padded by an upholsterer, I would have to pay for it myself. The answer was just that abrupt. I was rather surprised. I wondered how a vendor eight years before was able to re-pad the armrests and not charge me extra, or complain about it.

I was back in my power chair. We had kept it charged.

I still had to set my hand ON the joystick in order to use it. That just made me nervous. I was afraid the chair would get away from me like it did in the beauty salon in June.

That weekend on Sunday I was going through the doorway to the back dining room. I was trying to make sure I did not hit my right foot. Then things went awry and I did. I scrunched my right toes pretty good and my foot. It scared me.

I told my nurse I hit my foot and I wondered if it was broken. I asked if someone could look at it. She said because it was the weekend I would have to go to the ER to have my foot and toes checked out. She said it was breakfast time and they did not have time, or extra staff, to check my foot out. She said my doctor was called and he wanted me sent to the ER. I guess this is standard operating procedure on the weekend.

I was told to eat my breakfast. But since they did not want me standing on my foot, I was not allowed to go to the bathroom. No one even offered to get the Hoyer pad and lift me to the toilet. Soon after I was heading to the ER.

When I got there, I told them I needed to go to the bathroom to have a bowel movement. They asked me why I did not do that before I came. I told them my nurse would not allow me to stand and transfer to the toilet.

They x-rayed my foot out and when they found out it was not fractured, just bruised, they got me up onto a bedside commode. But, my bowels would not move.

I spent about three hours at the ER. It was not a great day.

I wondered how many times I would be injured using this new power chairs joystick – in the wrong position – before it was put in a better position for me.

Operational but not usable

I was left in my manual chair with a power chair whose joystick wire had been broken who knows how. But there was no doubt that it was broken. It was summarily removed and taken off for rejuvenation or replacement by John the older tech. I waited to hear when it would be working again.

The following Wednesday I had planned to go out. I thought the chair would be working by then. But I was wrong.

So I had my friend Mike come up even though my power chair was not running. We went through all the files in my filing cabinet and got rid of lots of old ones. We ordered out for pizza and salad for lunch..

I thought about being pushed in the manual chair. But Mike is in his 70s and the weather was hot. So we just stayed in. He commiserated about my new, larger, joystick woes.I was left in my manual chair with a power chair whose joystick wire had been broken who knows how. But there was no doubt that it was broken. It was summarily removed and taken off for rejuvenation or replacement by John the older tech. I waited to hear when it would be working again.

The following Wednesday I had planned to go out. I thought the chair would be working by then. But I was wrong.

So I had my friend Mike come up even though my power chair was not running. We went through all the files in my filing cabinet and got rid of lots of old ones. We ordered out for pizza and salad for lunch..

I thought about being pushed in the manual chair. But Mike is in his 70s and the weather was hot. So we just stayed in. He commiserated about my new, larger, joystick woes.

I got a lot done but I needed an outing.

Then, I was told two days later on Friday after the fact that John, the older tech, had come and put a new joystick on my power wheelchair. When he was not here by Friday afternoon at around 3 PM, we left the power chair in the hallway just in case. I knew of it was in my room and plugged into the charger it would be difficult to move it out again. But I thought the tech would call me or tell me when he got here. Instead, he neither called to say he was coming, nor told me he was here.

I ended up hearing about it from my nurse. Since John, the tech, had talked about putting on a larger joystick, I wondered what he did. I knew I had an operational joystick and that's all..

The next morning I transferred with assistance into my power chair. When I saw the joystick, it was larger, taller, and in a different position. I could not reach it. My aide tried to prop my arm with a rolled up towel but I could not reach to use it. I wonder how John could possibly have felt I could just use the joystick in that position.

I had a meltdown and started crying. My aide left me. I cried and cried. I didn't get to go to the dining room for breakfast. Instead, they brought me bread with peanut butter on it and cereal to eat.

I just got quiet and did not say anything. I do think I told my nurse that no one should have worked on the chair without informing me. I'm pleased they wanted to fix it.. But I felt they did not want my input about the joystick's placement. I was also told that the tech who had set up the power chair was on vacation for three weeks. So, John the older tech was the only one available to fix it. The vendor never mentioned the younger tech and suggested I wait until he could fix it..

I emailed the vendor and told him with the way the new joystick was set up, I could not reach it.

I emailed the regional long-term care ombudsman who had been assisting me through this new power chair process. She said the joystick needed to be put where I could use it.

Two weeks later and the power chair was operational but not usable by me.

The vendor said he would be there. But it would be after another weekend of sitting in my manual chair.I was left in my manual chair with a power chair whose joystick wire had been broken who knows how. But there was no doubt that it was broken. It was summarily removed and taken off for rejuvenation or replacement by John the older tech. I waited to hear when it would be working again.

The following Wednesday I had planned to go out. I thought the chair would be working by then. But I was wrong.

So I had my friend Mike come up even though my power chair was not running. We went through all the files in my filing cabinet and got rid of lots of old ones. We ordered out for pizza and salad for lunch..

I thought about being pushed in the manual chair. But Mike is in his 70s and the weather was hot. So we just stayed in. He commiserated about my new, larger, joystick woes.

I got a lot done but I needed an outing.

Then, I was told two days later on Friday after the fact that John, the older tech, had come and put a new joystick on my power wheelchair. When he was not here by Friday afternoon at around 3 PM, we left the power chair in the hallway just in case. I knew of it was in my room and plugged into the charger it would be difficult to move it out again. But I thought the tech would call me or tell me when he got here. Instead, he neither called to say he was coming, nor told me he was here.

I ended up hearing about it from my nurse. Since John, the tech, had talked about putting on a larger joystick, I wondered what he did. I knew I had an operational joystick and that's all..

The next morning I transferred with assistance into my power chair. When I saw the joystick, it was larger, taller, and in a different position. I could not reach it. My aide tried to prop my arm with a rolled up towel but I could not reach to use it. I wonder how John could possibly have felt I could just use the joystick in that position.

I had a meltdown and started crying. My aide left me. I cried and cried. I didn't get to go to the dining room for breakfast. Instead, they brought me bread with peanut butter on it and cereal to eat.

I just got quiet and did not say anything. I do think I told my nurse that no one should have worked on the chair without informing me. I'm pleased they wanted to fix it. But I felt they did not want my input about the joystick's placement. I was also told that the tech who had set up the power chair was on vacation for three weeks. So, John the older tech was the only one available to fix it. The vendor never mentioned the younger tech and suggested I wait until he could fix it..

I emailed the vendor and told him with the way the new joystick was set up, I could not reach it.

I emailed the regional long-term care ombudsman who had been assisting me through this new power chair process. She said the joystick needed to be put where I could use it.

Two weeks later and the power chair was operational but not usable by me.

The vendor said he would be there. But it would be after another weekend of sitting in my manual chair.

I got a lot done but I needed an outing.

Then, I was told two days later on Friday after the fact that John, the older tech, had come and put a new joystick on my power wheelchair. When he was not here by Friday afternoon at around 3 PM, we left the power chair in the hallway just in case. I knew of it was in my room and plugged into the charger it would be difficult to move it out again. But I thought the tech would call me or tell me when he got here. Instead, he neither called to say he was coming, nor told me he was here.

I ended up hearing about it from my nurse. Since John, the tech, had talked about putting on a larger joystick, I wondered what he did. I knew I had an operational joystick and that's all..

The next morning I transferred with assistance into my power chair. When I saw the joystick, it was larger, taller, and in a different position. I could not reach it. My aide tried to prop my arm with a rolled up towel but I could not reach to use it. I wonder how John could possibly have felt I could just use the joystick in that position.

I had a meltdown and started crying. My aide left me. I cried and cried. I didn't get to go to the dining room for breakfast. Instead, they brought me bread with peanut butter on it and cereal to eat.

I just got quiet and did not say anything. I do think I told my nurse that no one should have worked on the chair without informing me. I'm pleased they wanted to fix it.. But I felt they did not want my input about the joystick's placement. I was also told that the tech who had set up the power chair was on vacation for three weeks. So, John the older tech was the only one available to fix it. The vendor never mentioned the younger tech and suggested I wait until he could fix it..

I emailed the vendor and told him with the way the new joystick was set up, I could not reach it.

I emailed the regional long-term care ombudsman who had been assisting me through this new power chair process. She said the joystick needed to be put where I could use it.

Two weeks later and the power chair was operational but not usable by me.

The vendor said he would be there. But it would be after another weekend of sitting in my manual chair.

Broken down power chair and sitting still

Power wheelchairs used to be considered a luxury. So they so they were not purchased for nursing home residents by Medicaid. I can certainly understand why those who govern Medicaid thought that. But when my power chair's joystick would no longer function. I found out what it was like – again in my life – to have to sit and wait for others to push my wheelchair.

Before and after meals I sat in my chair and waited. I couldn't go up and down the halls of the nursing home by myself. I would sit in the lobby after breakfast feeling like a piece of furniture. Sometimes residents or others bumped right into me not even noticing I was just sitting there waiting.

From the looks I got, I must have had a dismal face when I was sitting there waiting. I felt like I had no freedom.

I had notified the vendor and he said a different tech would stop by to see what could be done. I hoped he would get there soon.

The next week on Wednesday I was sitting in the front lobby waiting to be taken back to my room. A strange man that I did not know came up to me. I thought he would give me a card or identify himself. But he didn't. That day I was in the power chair. The aide who had me didn't mind putting it in "free wheel mode" and pushing me. So the man, I'll call John, started looking at the power chair. It took him several minutes before he told me that the joystick was disconnected. I told him we knew that because the nursing home's maintenance man had told us that Monday morning.

Then John asked me why I had such a small joystick. I told him someone probably thought I needed it. He said I needed a bigger one. I had no idea there was a bigger one because no one had said that. But I suggested I'd gotten used to the old one and would rather have one that was similar. He complained about the way the other one had been attached.

Eventually, he removed the joystick and its wiring. He told me he was going to try to solder the connection back together. He said if he could not do that, they would have to order another one. He said someone was responsible for the joystick breaking. He said it would not be covered by the warranty. I told him that the nursing home transported me to a medical appointment. I said turning the power chair in the minivan caused me to get caught. I said the bracket on the back of the power chair stuck out too far. I told him I did not think the controller box should have been put in the middle of the back of the power chair. I said the controller's placement might have been the problem. But John wanted to blame me getting caught on the fact that I had a backpack on the back of my power chair.

He told me a new joystick could cost $500-$800. I told him there was no way that I could pay for it. He gave me a kind of menacing look. Then he got a phone call and went up the hall to take it.

There was no one with me to hear what John, the tech had just said. I so wished a friend or family member were with me so that they could say something that I as a nursing home resident could not say.

Before long, John the tech came back. He said he would be back to put the joystick on my chair if and when he got it fixed.

With that, he left.

Later as I thought about all of this, I wondered why one tech who worked for the same vendor as the one who put my chair together, would criticize him. I sensed bad blood between them and wondered if the older guy, John was a bit jealous of the younger one. But it was also apparent that he thought the younger one had messed up in some way.

I wondered how long it would take to get my chair back in working order again.

In the meantime, I knew I would have to be pushed.