Reconnecting with the Church

I've lived at my third facility for two months. I wish now that I had called the Catholic Church here when I first came. But, mistakenly, I thought social services contacted our resident's church. However, because of HIPPA that can no longer be done.

I emailed the church in mid-October. They replied that someone would be out to give me Communion on Sundays. But that next Sunday, no one from the church came, or called.

I kind of let it go because I thought they might be having a time with scheduling. But, since no church volunteer has been here, there must not be any other Catholic residents living here.

I didn't know quite what to do because I've never encountered this situation before.. At my two previous nursing homes, each Catholic Church contacted me. And I was getting Communion soon after I arrived. The first Catholic Church was in a small town over 70 miles away that has two Catholic churches. Many residents of the nursing home were Catholic. Therefore Communion Distributors and the priest were frequently in the building. The church was one and one half miles away. That made it easy and convenient for volunteers, the Catholic school children, and the priests do visit the nursing home.

At my second facility I called and not much time passed before two nuns came to visit me and brought Communion. I didn't see the priest and he never showed up without scheduling before hand. But, I received Communion regularly from two different Communion Distributors during the seven years I was there.

So, yesterday I emailed the Catholic Church again. I explained that I would be grateful if I could receive Communion any day during the week. They did not have to try to come on Sundays if it was difficult..

The church replied that they would endeavor to get someone to come and bring Communion me as soon as possible.

I'm hoping a Communion Distributor will be able to make it here soon.

Defining short staffing

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The day I arrived at this facility I wondered which color uniform the nurse aides wore. I saw lots of people at the nurses station, but most of them looked like nursing supervisors and managers.

After watching discreetly, I decided the aides wore the royal blue uniforms. I was so surprised that they were standing at the nurses station. I would've thought they'd be running up and down the hall checking on residents.

I also saw no carts on the hallway and no cooler cart carrying ice. I thought that was strange too. I wondered if they pass snacks here, and also if they ever passed ice.

It took me a while, until the following Labor Day weekend, to find out. On that weekend one older aide passed ice quite slowly on both hallways, only once during a twelve hour shift. To me that was surprising. Although, these residents can drink pop from the dining room. But I bet if they drink too much, too early in the month, they probably suck ice all run out sooner. I've noticed that at different times in the month, the pop dispenser is out of some flavors.

That first day, I saw call lights on for quite a while – particularly my roommate's. But I thought because she has older (eighty-one) maybe they thought she had some dementia and put her call light on for unnecessary things. But she was in bed pretty much all the time when I came. Consequently, in my first few days here when I was riding up and down the halls getting used to the place, I came back once an hour to check on her. I didn't mind doing it and I think it made her feel better. That way if her call light was on, I could find out what she wanted and go to the nurses station and tell them.

There is just such a disconnect when an aide goes into her room. I just seems like that aide loses concern for the other forty-three residents or forty-four who may have their call lights on and need something.

Some of the aides said that I don't care much about the other residents. They said that because I have a routine that I'd like them to follow. But, I think that could be a better accusation for them.

They close every door when they go into a room. Private rooms have no privacy curtains. So, in those rooms, the door provides privacy and needs to be closed. But there are curtains in the semi private rooms, and perhaps those doors could remain open.

Can no one but me see there's not enough staff? Staffing three aides for forty-five residents, means each aide is responsible for at least fifteen people. That's a lot of residents to care for.

It's unbelievable, that I came from a facility with a better care environment than that – at least on dayshift on the weekdays.

Trying to get into the flow

After tomorrow I have been, at my third facility, for two months. I can't hardly believe it's been that long. But, the aides and nurses are still not familiar with my daily routine.

It's hard to remind them when I'm in the hallway. One aide has already said I follow them until I get what I want. But, I don't know what else to do.

It was a bad morning, after a bad night, after a bad afternoon. We were shortstaffed on all three.

But this morning, for some reason things moved along better than I thought they would. The residents, except for me, were finished eating in the dining room before 8:15 a.m..

I was told to go to the dining room and the lights were turned off. I don't know why anyone would do that when residents frequently go to the dining room.

I ended up being told that my breakfast tray was on the hall cart, and to just wait for my aide.

It worked out, I got fed by myself in the empty dining room. But it wasn't a loss because the aides ate their leftover breakfast while I was eating.

Then, instead of waiting an hour after breakfast to get to the bathroom. I had to wait almost two.

But most of the aides know I go to the bathroom after breakfast. After that, I had to get my teeth brushed, since there is no time to do it earlier.

I was waiting by the nurses station and my aide and another aide left to go to lunch. I asked if I could go to the bathroom. I was told I'd have to wait.

I told one of the nurses I really needed to go and asked if they wouldn't help me. I was kind of surprised when they said they would. An aide and two nurses followed me to my room.

I thought they put me in there at 10:30 a.m.

My call light was on and I still waited for twenty or thirty minutes. I decided to start to call "nurse".

Not long after my roommate came in and saw that I was in the bathroom. She reminded me lunch was being served early, and she said it was 11:20 a.m.

Then, she left to go tell someone I was still in the bathroom..

Soon after, my aide got me out of the bathroom and I made it to lunch.

It'd be great if they had hospitality aides, who could answer call lights. Then they could let the aides know which resident wants what. Then, maybe no one would get stuck.

My roommate's sleepless night

My roommate I will call "C" had a bad night. Last evening she said her urinary tract infection symptoms were driving her nuts. I felt sorry for her because I could tell she was kind of jumpy. "C" is 81, paralyzed on one side from a stroke over 40 years ago, and has congestive heart failure.

She quieted down early. But it seems like every time there's a different night shift nurse, she has trouble sleeping.

She first woke around 2 AM and turned her call light on. That woke me up immediately. She said she was cold, needed help and put her call light on. I said something into the nursery monitor beside me that "C" needed help. Last night was the coldest night so far, this fall..

After the aide helped my roommate, I had him put new earplugs in for me to see if they would quiet the room. Initially I thought they were okay, but I could still hear way too much of my roommate's TV noise, in spite of them.

Within a few minutes "C" was quiet. For about an hour and half I thought she was resting. But, "C" has her TV on all the time. Because she could not sleep, she turned it up to watch it.

My earplugs usually dim the noise somewhat. But even the new ones made it difficult for me to sleep.. Most nights one of the aides turns down "C's" TV after she's asleep. But last night they couldn't.

Then, sometime after 4 AM I heard "C" calling for, in a high, thin voice. When the aides came in, they said she wasn't over there. They found her in the bathroom sitting in front of the sink with no lights on.. She got there quietly, using her wheelchair and I didn't hear her. She was in the dark because she couldn't find the light switch. She went there to put in her dentures..

After that, she stayed up. But, thankfully before she left the room she turned down the TV.

When God visited with Deidre

I will call the admissions director here Deirdre. That name is just as good as her given one. But this way she can remain anonymous.

Anyway, Deirdre fed me my snack the other night because the aide who was supposed to was a bit grumpy about the whole thing. The aide thinks I'm too much of a bother and that I should just go to the dining room like the other residents. But we all know not every resident here does what they're supposed to, all the time.

I enjoyed Deirdre feeding me and it didn't take very long. I kind of always wondered why a staff member or several couldn't have taken turns feeding me. I understand that's not really fair. But, we do sometimes help some individuals more than others, and probably never think about it.

You see last night the aides were overwhelmed, and they said they had no time to feed me the snack I eat, instead of supper. I don't quite understand that. But I have kind of a hardened take on what happens in nursing homes all the time. If a resident gets very ill, within fifteen minutes, they're either better, dead, or on their way to the hospital. That's just the way it is. I've been watching it for twenty-one years.

They had a lot of admissions yesterday, maybe too many. But there was a need and of course that's how they make a profit, and of course they will not turn potential residents away.

I just think there should have been way to meet my need for a snack. If I'd been my aide, I would've had a friend or family member nearby go pick up Taco Bell. Then, that aide could've eaten with me during their lunch break, which they could've taken in my room. Yes, they may've had to give up a smoke break. But they would've felt better for doing it.

But apparently that wasn't thought of. And while I was angry about the situation, I knew the aides weren't to blame. But, their attitude could've been different. I also wouldn't have turned down some pieces of a 10 PM pizza, but nobody tried that either.

So tonight after a very down day and getting almost forgotten at lunchtime, Deirdre offered to come and feed me the snack of my choice. It would've been nice if I could've gotten something really nifty for us to eat. But, Deidre fed me my hummus on pretzel crackers.

Deidre and I had a lovely conversation and for once, my snack was not rushed. I felt that God visited in the person of Deidre who came in to feed me a snack and her visit helped to alleviate some of my stress.

Living on the rehab hall

At my third facility I'm on the rehab hall. There are a lot of comings and goings here. Residents leave on ambulance carts and return later. They do more mobile x-rays. Therapy runs up and down the halls and walks residents most of the day. It is just a really busy place.

When I first came, there were seven empty beds on this rehab hall. Within a week, they were filled.

That's the way it will be here. It's much like my first facility was after they remodeled a couple of years before I left. This rehab residents moved in and out on the hall. When I first came there, it was the long-term care hall.

Living on the rehab hall is a lot like being in the hospital. The residents who are brought here are in pain after surgery and they are very needy. They're quite different to care for than long-term care residents.

Many rehab residents have cell phones. Their families and friends are in and out during the day. The only thing I haven't seen on this rehab hall is a priest with a Roman collar. That's because I'm looking for one.

The rehab unit private rooms have tables in them and residents can invite a spouse or family member to come and eat with them. This facility provides guests meal trays gratis.

This is such a busy place compared to where I used to live. That behavior facility could be busy when there was a resident outburst. But, once it was under control, things calmed down.

This place doesn't usually calm until the residents are asleep.

I can understand why management wants to move me to the long-term care hall. At least it should be a bit quieter. Even though there will be people there with mild dementia who will probably be louder than the rest.

I didn't prepare to vote

A few weeks ago a friend encouraged me to vote in this off year election. I told her I seldom vote in off year elections. But I do vote in congressional and presidential elections in the even years. But she said I should vote because there was a State issue on the ballot that deserved my attention.

For some reason I decided to check it out. I went to the Secretary of State's website two change my address and thereby reregister to vote. I was able to change my address but I was passed the deadline to register before the election which was October 10. If I could get to the polls, I could take my ID and vote there. They would use my voter registration from my previous address (different county, same state) and let me fill out a provisional ballot. Then those who count the ballots would decide whether it's valid.

The chaplain here was in charge of getting out the vote and dealing with the board of elections. They come here for every election and help the residents vote. That's what happened at my first facility. But I found it was just easier to fill out the application for the absentee ballot, have a friend help me complete it, then I'd sign it, and it would be mailed back.

After lunch I found out that today is voting day. I went down to the dining room and chatted with one of the ladies. I told her if easier for me to sign the ballot if I was set up at my table in my room. She encouraged me saying I could make an X and they would cosign to make it valid. I told her I knew that but I preferred not to do that. I also told her if I could not vote, it was okay because I had not prepared myself to vote.

I left because it was time for a bathroom run. And, sure enough, the ladies and the activity director followed me up the hall. I told them I had decided not to vote this time, but thanked them for their effort. They told me they'd be here next time, if I'm still here.

That's the first time that something turned around for me. I know that the chaplain probably exercised his influence. However, everyone is encouraged to vote, especially if you're white. That's a horrible thing to say but it's true.

Anyway, I will be registered to vote now since the Board of Elections in the county where I now live has my new address.

Inconsistency is consistent

One day at this facility is horrible. Then, the next will be a bit better. Sometimes there's a day that works like clockwork. Unfortunately, it looks like the only thing I can depend upon is that there will be no consistency.

Sometimes I think it's because aides don't communicate well. I don't know when they go to lunch here, and sometimes they seem to avoid caring for me which is disconcerting. Some evenings there have been enough aides here to help me eat my snack earlier. But, I didn't get fed early that night.

I'm sure they wanted me to stay up for supper and put me in bed right after. Since I didn't do that, I hope they're not aggravated.

I've asked for care conference which I'll have some time in the future. I have no idea what the outcome will be.

I was sitting here earlier wondering why the nurse was so late bringing my meds. I know it was after 6 PM and she's out of compliance with the regulations by then. I wanted to know what was going on. I completely forgot I now have a call light and could have put it on. Except, I did at 4:30 p.m. and fifteen minutes later no one had answered it.

I called the facility number and one of the managers answered. She offered to give me a drink. After she did, I told her I needed my leg adjusted. But, no one came to do it.

I don't know if they just forgot or just didn't come.

I think they need to check in with me more often. The nurse didn't ask if I needed anything. And, I asked her if an aide would feed me a snack some time, and she said she would.

They probably have a plan. I just don't know what it is.

I had the nurse try to fix the pillow under my arm just a bit ago. She's probably never done it before and it wasn't put where I wanted it.

Now my arm is sliding off a bit which will make me uncomfortable and maybe unable to use my arm. I called the nurses station and night shift said I'd have to wait till the aides yet to me. That may mean I will have to wait until 8:30 p.m. to eat a snack.

Maybe I shouldn't let that worry me. But it does.

Writing about involuntary discharge

For the last several days I have been writing drafts for my freelance blog about my recent involuntary discharge. The first one I wrote quite quickly. But after I went back I realized it wasn't right. It didn't quite say what I wanted it to say. I thought I wanted to explain what happened, thank my caregivers, and declare I would always be honest about the care I expected from nursing homes.

Today I worked diligently to get a draft I liked. In the past few days I wrote six of them. However, when I went back to read them, I no longer liked what they had to say.

I don't want anyone at either of the facilities where I was involuntarily discharged to feel I had any malice toward them. I wanted them to know I tried my best and I thought they did too.

Though I would've liked to have detailed many of the things that happened before, during, and after the move to this facility because some were strange. But, in that draft I decided not to share them.

I wanted so badly to include in one of them that I hope someday nursing homes will no longer have to involuntarily discharge residents forcibly. Perhaps a government agency or a nonprofit can assist nursing homes to outplace residents who are causing trouble, or those the facility's feels should be in a different environment. Caring for facility residents can be impersonal. I've overheard conversations where nurses and aides talk about residents as though we are items in a warehouse.

I didn't think it was necessary to blame anybody for anything. I also didn't want to infer that I was to blame.

I wanted to be sure that the aides and nurses all knew, that I appreciated all of them, even those who weren't my favorites.

I'm wondering what I will do with the blog drafts that are no longer useful. I suppose they will go to the recycle bin in the sky. But maybe, I'll decide to keep them for posterity.

I wish I knew if this nursing home will work out for me. I don't even know what I would've picked if I'd picked one. I know I would have preferred a private room. However, even though my roommate incessantly watches TV here, I don't want to be in a room by myself.

Perhaps as things change, they still remain the same.

The watcher's perspective

In my over 21 years in nursing homes I have been an observer. Sometimes, I ended up seeing something that I least expected. At times I got stuck outside or inside and was forced to watch what was going on until I could get the chance to get back in.

The one thing that does bother me is that, since I need to be fed, I sometimes have to wait.

Here at facility #3, they have a cozy dining room that's nicer than some homes have. But, they have a population of mostly older, frail residents and many need assistance to eat.

When I first came, I watched how dayshift worked. It seemed like the residents who needed fed were being fed promptly. But, I also realized therapists, management, and even the administrator fed residents during the week. I wondered what happened on the weekends when there is always less staff.

It didn't take long for me to find out what happens. Maybe because I'm new, younger, and able to sit up longer than then the other long-term care residents, it is necessary for me to wait until they're fed before I get to be fed.

On Thursday, my lunch tray was sitting on a table, still covered. The administrator, who finished feeding a resident, took my tray to the kitchen and had it warmed. I appreciated the fact that, even though I was late, my food was warm.

Today we were shortstaffed. They're trying to hire aides to work – just on the weekends. That way they hope they're less likely to call off. But, a nursing student who was scheduled to work as an aide, Friday, Saturday, and today, called off. Since the younger aide didn't do a wonderful job yesterday, an older aides talked with her. I think she gave her the straight story of what is expected when she works here. She told others she felt put upon, and the call off followed.

I headed down to lunch with the other residents. I sat with my roommate at a table with another female resident.

Everybody at my table could feed themselves, and their trays came quickly. They started eating and I watched. I was told I would be fed after the other residents who needed assistance to eat.

Usually it's hard for me to sit and watch other residents eat. But today, I was okay with it. It was not my favorite meal and it wasn't making me hungry at all.

I think I may have waited 30 to 45 minutes for my lunch to be fed to me.

Unfortunately, in nursing homes at times it is necessary to wait for things.

Can I live for the one or two good days a week?

As good as yesterday was, this morning was awful. Weekends are never good in nursing homes anyway. But this one was outstanding in its not goodness.

Everything was late. But an aide did warn me that this morning would not be good, which I didn't want to hear. Last weekend we had four aides. This weekend we had three. Believe me, I noticed the difference.

I was again late getting my suppositories and couldn't get out of bed because there weren't enough aides to help me. I ended up soiling the diaper since I couldn't get up. I really wish the nurses could have helped get me up.

My call light was on for over an hour and they were too busy to come and answer it. I was seldom left without assistance at my previous two facilities. Oh, there were occasions when everything went wrong all at once, and I got left somewhere. But, usually, they tried to put me in a comfortable spot.

So, I ended up AGAIN sitting on the shower for two hours. I guess it could've been worse like the three hours I spent on it a week after I arrived. I really think it does something to my mind to be stranded in one place, with nothing to do, and unable to move. I'm sure they use something similar as a method to get information out of criminals and terrorists. I'm here to tell you that it would work.

The aides and nurses at this facility seldom get angry like they did at facility #2. There the aides and nurses frequently got upset with me if I was anxious because they couldn't get to me soon enough.

But early this morning I did pretty well. I didn't get upset. But, waiting kind of wears me down. I was shedding a few tears after lunch because I wanted to get to my desktop to have something to do.

After lunch, I rode up and down the hallways trying to keep myself moving and thinking of something other than the fact that I was stranded in my power chair.

The weekend manager was the Central Supply Guy. He was here this morning. Unfortunately, he's not one of the staff who's been trained to feed residents. If he could've fed residents, they'd have appreciated it.,

I wonder if any nursing home has a surefire backup plan for when they're shortstaffed on the weekend.

The calm days scare me

This morning it was my shower day and two aides worked together to do my shower and there was no hassle or problems. When I was a bit late for breakfast in the dining room, no one was concerned because the student nurses helped to feed residents breakfast as well as doing other things. I hoped those students weight guarantee the residents did not go unattended, because I was getting some extra care.

Sometimes I feel guilty when a calm day happens. It's like I'm waiting for the other shoe to drop. I always feel a manager will stop in and tell me that I am taking up too much of an aide's time. In fact, at my previous facilities I would have trying to get the aide to finish so she/he could go help another resident. But this morning I didn't do that.

Afterwards, I realized I felt calmer having the same a.m. care routine two days in a row. I know I used to adapt better. Though, I never was good at it. I like things be routine. Doing things the same way is fine with me. In fact, routine makes me more comfortable.

But I know this regimented care wave can't last long. But I hope these aides understand that after twenty-one years living in nursing homes, there isn't much I haven't seen. I've know the good, the bad, and the ugly of nursing home life.

Every time this place, or my previous two nursing homes, put me in "wait mode", it scared me. And I'm there again tonight.

I have the feeling that they're short on second shift. It's hard to get aides to work on Fridays. One aide was moved to another unit about an hour ago.

The nurse was just in, very late, to give me my meds. That way at least I got a drink of water.

I wonder how long I'll wait this evening before an aide feeds me a snack.

The Wi-Fi went out

Today I got on my desktop PC and there was no Wi-Fi. Without a usable call light by my desktop, I had no way to let anyone know the Wi-Fi was down. I usually call facility #3's number from my Skype phone on my desktop.. This morning I couldn't do that. I asked a student nurse was with my roommate if she'd tell one of the managers the router needed to be reset.. She said she would. The administrator and the maintenance usually do that, but they were gone.. I knew in order for the Wi-Fi to be reset, another employee would have to do it.

My aide returned to try the Wi-Fi on my laptop. Unfortunately, it had no Wi-Fi either.

There were plenty of things I could do on my desktop without the Internet. But, none of them are as fun and informative.

I started working on some writing and did better than I expected given my frustration factor.

I decided to clean out My Documents file. I knew there would be lots there to do. I really need to get a lot of files off, and moved to storage devices. I hate to remove some files from my hard drive because they're my history. But I don't want to become a file hoarder either.

So, I was into that when my aide came to get me for lunch.

The world kind of fell apart after that. Then, the housekeeping supervisor told me she had reset the router. A few minutes later I was told it was working. It's interesting how me falling apart and the Wi-Fi being reset happened almost simultaneously.

As soon as I saw the Google doodle on my desktop's screen, I felt calmer.

But, due to circumstances I was not able to get right back on my desktop to use it.

I'm on my laptop this afternoon and the Wi-Fi is wonderful when it's working..

Adjusting to facility #3

I came to this nursing home over six weeks ago. But I'm not quite moved in. No pictures or mementos are hung on the walls. In fact, I haven't even looked for the sticky hooks, easily removed, that will hold them,

Yesterday my sister, Janice helped me store my summer clothes. She put midweight pants and shirts along with a few pairs of winter weather clothing in my closet.

It's so different having a conventional closet. This facility has a typical couple's closet like those in most middle-class homes. I'm grateful to have more closet space than at facility #2.

Janice put all my clothing away in tape closed clear bags. The only surprise we found is I saw one of my facility #2 roommate's tops in a tote in my van. It got picked up my mistake...

Since my heavier tops seemed to be missing, my sister looked in the stored totes in my minivan, and found the tops.

I have to say that I hate moving. But I guess it did give me an opportunity to get rid of things I no longer wear, need, or use.

For some reason living in facility #3 feels so temporary. When I moved two facility #2, I was already labeled as having "behaviors" and they treated me like a mental case.

I'm still getting used to the way this facility is managed, then there are some difficulties. When I go to the dining room, I don't roll-on in., I stand like a slave who is waiting for my master's order..

I just wonder if I have posttraumatic stress disorder because I was treated like a mental patient. I have freedom at facility #3, that I didn't have at facility #2. Pop is free for the having in the dining room, now that I no longer drink it. We residents can order food out whenever we want. It's not confined to to a particular day of the week.

I'm also allowed to go outside with friends and just walk around the parking lot. We haven't done that yet. We're still in the habit I'm not going out because facility #2 in a "not so good" in a larger city.

Maybe soon I will find my niche in this facility, and then maybe I'll feel more like I belong.

My dental dilemma

I saw a nursing home dentist once, and didn't like it. When  he told me I needed several cavities filled, I called my dentist, went there, and learned I didn't need all of those teeth filled. My dentist told me to go to a private dentist near me. He felt I would get better care than from the mobile dentist.

Ever since I was disabled at nineteen, my dentist warned me not to have dental work done while I was in my wheelchair. He said it could further injure my neck. I decided to heed what he said. That's why I found a dentist across the street from my first facility and saw him, until I went on Medicaid.

The Medicaid dentist was eight miles away. Usually, a friend took me. But sometimes the medical transportation aide took me. Going to the dentist could be difficult for me. Some offices have dental cubicles have little room for me, two aides, and my power chair.

When I moved to my second facility, I could afford to hire a driver to take me out. When my driver took me to the dentist, one of the staff, or two, helped with the transfer.

After I turned sixty-five, I could no longer hire drivers. When the facility transported me the dentist said two aides had to accompany me to transfer me into the dentist chair. I was pleased my second facility willingly drove me and sent another aide along to my dental appointments.

I'm at my third facility, and it looks like going to an outside dentist might be impossible. Today, I was scheduled to see the dentist. I sat and waited and my pickup time went by and no one came. None of the staff could tell me what happened.

The aide who organizes transportation came in and I asked him if I'd missed my appointment. He said the dentist said I couldn't come there if I could not transfer into the dental chair by myself. I reminded him that I had told social services that I needed two aides to accompany me to transfer me into and out of the dental chair. I didn't understand why they made the dental appointment.

Upset about the situation, I went crying to my room. I wondered why a dentist would require such a thing, when I've been going there for seven years. If I had been the medical transportation aide scheduler, I would never have repeated what that dentist's office said.

Later, another aide came down and told me that this facility won't send two aides along to transfer me. She said I'd have to see the mobile dentist who comes to the facility.

But, I still couldn't understand why the transportation aide forgot my needs and scheduled an appointment that couldn't be kept.

I wonder if this can be worked out and maybe I can go to the community dentist.. If it can't be worked out. I may be destined to see  the mobile dentist.

The same breakfast every day

At my previous facility, I got cereal and a piece of toast every day breakfast. But I also got surprises from dietary. They knew there were some things I didn't like. But, on some days, it seemed like they didn't care.

Now that I'm at this facility, for the first couple of weeks I got what dietary gave me. Sometimes it was scrambled eggs and toast. Then, my aide had to run back to dietary to get me toast and cereal. It takes dietary a while to learn a new residents' food likes and dislikes.

I've had so many days of a dry piece of toast with peanut butter and a bowl of Cheerios that I was getting kind of tired of them. One Wednesday, a couple of weeks ago, I decided I wanted eggs for breakfast. They were scrambled and they weren't bad,  but just a bit cold because I had to wait for someone to feed me.

There's been a couple of occasions on weekends where I've asked for scrambled eggs because others had them and they looked good. However, I try to stay away from them. I only want to eat them three days a week.

This morning they had toaster/round waffles for breakfast. They weren't brown and to me they looked like they wouldn't taste very good. But I knew many residents have difficulty chewing and swallowing, and they couldn't eat them toasted.

I've been told I can ask, within a range, for what I want for breakfast. For instance, if I want an egg sandwich, I can ask for a broken yolk, fried egg.. I wonder how that would taste. I haven't had a fried egg since I left my previous facility over seven years ago.

But I've learned to adapt to the institutional eggs blended, baked in a pan,  and cut in squares at my second facility. They looked strange at first, but, I got used to them.

I appreciate the fact that that I can get toast with peanut butter and Cheerios for breakfast.

The one thing I'd like it is for this facility to offer bran flakes.. That way there'd be another cereal available that I like.

Doing things a bit differently

This morning my a.m. care worked out better. But, I was about fifteen minutes late getting my suppositories. However, they are endeavoring not to leave me sitting on the shower chair for too long.

The aides double teamed to finish my washup quicker. The younger one, I will call Ellen wasn't very sure what she's doing. But, as a nursing student, there's no time like the present for her to learn. Learning by doing is better anyway.

They had to hurry so I'd get to the dining room. They got me washed up, dressed, and my hair put together in less than thirty minutes – which is great time. I think they could've spent a bit more time and I would've been washed better and felt less itchy. But that's a topic for another day.

I need to figure out how we can refine the washup. It needs to be done more like at stop at my previous nursing home. We need to get a system down and there isn't one yet . It's all hodgpodged and messed up.

But, things take time and I need to give the aides time to adjust. I also realize that some of them will never adjust to, or like, what I want done.

Ellen, younger aide, told me this morning that if someone wouldn't wash her the way she wanted, and do the things the way she wanted them done during the washup, she told me she'd be upset also. That shows that a 17-year-old can understand how I feel.

Ellen, who is a new aide, is doing a good job. She's going to nursing school and has a test on Monday. She has studied Buddhism and practiced it with yoga and meditation. I told her I admire her for her ability to try to fix herself instead of trying to fix everyone else around her.

Tonight, the nurse allowed Ellen to feed me my snack while trays were being passed. I had suggested that when Ellen set me up with my laptop, and I'm glad they did it that way, instead of waiting.

Getting my snack early cause me not to have to worry about it this evening.

Tonight I have my own call light

I've been living here for almost six weeks without a call light. It's been quite disconcerting. I've been using a blow in/breath activated call light since 1998. It means I do not have to try to hold onto a call light. It is is a straw mouthpiece mounted on a gooseneck arm that attaches to the side of the bed. When I blow into it, the call light comes on.

It was hard getting used to not having my call light. The first few nights I kept reaching for it with my mouth, and realizing it wasn't there. But, maintenance said their call light system was too old to work with my type of call light.

However, after my roommate fell the other night, I decided I must have a call light. When that event happened, I realized that I had no way to help my roommate or myself, and it frightened me.

I filed a complaint with the local nursing home ombudsman's office. The ombudsman rep visited on Tuesday to check on the status of my call light. She said it was unacceptable that I didn't have one and was trying to use a nursery monitor instead. The aides and nurses were not responding to the nursery monitor very well. I wondered if they could even hear me.

Immediately, the maintenance man started on a work around that would allow my call light to work.

Today, I went out with a friend for lunch. When we returned my call light was set up on the bed. Although it was done incorrectly, I wanted to see if it would work. My friend blew into it but the call light did not come on. She went to get the maintenance man and he showed us, by blowing into it himself, that it worked. Then, I showed him where its supposed to be set up on the bed, and he repositioned it.

I'm using it this evening and I feel so much better. It's terrible when I feel like I can't communicate when I something. I have put it on twice this evening and it has been answered. That may not happen right away, every time. But at least I have a way to notify the aides and nurses that I need assistance.

I told them to cancel the appointment

A week ago I was told I had two appointments on October 12. One was with an oncologist because I've had breast cancer three times. A few hours later the facility scheduled an appointment for a transvaginal ultrasound – which I've never had. I couldn't understand why they would schedule two appointments for the same day. I thought that was too much.

I wrote a letter to whichever nurse would handle it, saying that I didn't want two appointments scheduled in one day. I also said I preferred not to go on October 12 or October 18 since I was getting company on those days. I only had the business office email so that's where I sent it, and requested they forward it.

Later that day the facility chaplain came to talk to me about the appointments. I told him I preferred they not schedule two appointments on the same day. I haven't done that in five years.

I said I wanted the transvaginal ultrasound rescheduled for a different day. Looking back, I think I got my dates mixed up and thought the second Wednesday in October was the 12th. However, they should ask me if I have anything upcoming on my calendar, before they schedule medical appointments.

I had the appointment Post-it note on the front of my desktop PC screen. Thinking it had been cancel, I must've had someone remove it.

Fast forward to this morning. After I was dressed I was told that I had an appointment this afternoon. I realized it was for the vaginal ultrasound. I told them it had been canceled last week. But, they said it wasn't canceled. I told them I wouldn't go.

I felt I didn't have enough information to go to that appointment. I'm a quadriplegic and I'm concerned that a vaginal ultrasound could be uncomfortable and might cause spasticity. I suggested I might need to have a sedative before I have the test.

I said I emailed this information the business office manager last week, and wondered if anyone got it. I told them, no matter what, I was canceling.

Later, I talked with the assistant director of nursing and told her my concerns. Not long after, she said she called the ultrasound tech and she's never done a transvaginal on a quadriplegic. I told the ADON that I was going to look online for more information regarding getting a sedative to have the test. She said she'd reschedule.

In my research I learned some women find the transvaginal ultrasound so uncomfortable uncomfortable that they have to have a sedative before having it done. Even though the ADON says they will stop the test if it's painful, I don't think I need to go through that. I don't know that they'll stop the test. I just wonder they're doing it because that is the newest technology, and they want to use it.

Nursery monitor not effective

I came to this nursing home at the end of August. Back then, the maintenance man said the Breath Call (breath activated) call light wouldn't work with their old-style, flip switch call light system. Nevertheless, my sister and I both searched for adapters for the breath activated call light. Janice found some and I emailed them to the maintenance man. But, he kept telling me an adapter would not work with the system.

My sister bought a nursery monitor and in the beginning it seemed to work. But, I wondered if it would work long term. Nursing homes are busy places and nursery monitor senders and receivers can get dropped, and broken. That had happened at two previous nursing homes.

Gradually, the aides and nurses seemed to get slower answering the nursery monitor. I wondered if they could hear it. The receiver unit has to be recharged and then can be unplugged until it loses its charge. I knew if the receiver unit was being left at the nurses station, it would be difficult for the aides to hear me. A discharged battery would make it unusable. Then, they would have to plug it in. A nursery monitor with batteries would have been preferable and easier to use.

It seems almost impossible for the aides here to answer call lights within fifteen minutes. Expecting nursing home residents to wait longer than that concerns me. Some residents are on the Rehab Unit and and have just left the hospital after surgery, stroke, heart attack, cancer, or other illness. Some need quite a bit of care at least at first.

I know I was frustrated right after I was set up to sleep because I couldn't put my call light on to get an aide to adjust me, or whatever was bothering me. I started ignoring what was bothering me, an itch here, a too tight splint strap there. I hate to run aides back and forth. But nightly discomforts have a way of escalating. Then, the too tight splint caused middle of the night pain, I blamed myself for not having a usable call light to to get some help. Ignoring something that was uncomfortable, seemed so wrong in so many ways. It was like I'd lost my freedom.

I've been here for a little over five weeks. I now wonder if the aides can hear me on that nursery monitor.

I hope the facility maintenance man can rig my Breath Call so I can use it.

Me and Charlie challenged in the middle of the night

Last night, in the middle of it, I woke with my right leg straining inside my night splint. I started talking into the nursery monitor (which serves as my only call light). I said my right leg was hurting and I needed to have the splint loosened or taken off. Then, I heard my roommate Charlie, short for Charlotte, say something. I thought she was offering to put her call light on which she frequently does. But, that's not what it was and I could tell there was a problem. I asked her where she was. Eventually, she told me she was on the floor. She had fallen earlier in the evening and was warned not to get up. But she got up anyway, and fell again.

So, here I was hurting and Charlie was on the floor. I spoke directly into my nursery monitor saying quite loudly that Charlie is on the floor and that she felt. They can answer me on that nursery monitor if they have it near them. But no one said anything. For forty-five minutes after that I called for help almost continuously. In between, I checked on Charlie trying to make sure she wasn't unconscious. I encouraged her to keep trying to reach her call light and pull it on, or try to reach her cell phone to call 911.

As the minutes ticked by, I felt so impotent. There was little I could do to help even my roommate, who I knew could be in real trouble, or myself who was in pain.

Charlie finally said she was able to reach the call light and put it on. I hoped against hope that someone would see it.

I was surprised that within ten minutes an aide came through the door. She found Charlie with a forehead laceration, and bleeding all over everywhere. Immediately, that aide went and got the nurse who gave Charlie a tongue lashing for getting up. But Charlie was being Charlie and was feisty to the nurse right back. She likes to move around, and be independent if she can. She also doesn't like waiting for help that seems to be constantly tardy.

I reminded the aide that when Charlie had been cared for, that I needed some assistance.

Within fifteen minutes Charlie was on her way to the ER. Before that, when the paramedics arrived, another aide came over and took off my splints.

For some reason my leg was hurting really badly. I just wondered if I was holding myself stiffly trying to help Charlie and I get through this scary middle of the night..

Charlie got some stitches in her forehead and it's covered by a large bandage. She's been told to stay in bed and put the call light on every time she needs to move somewhere.

Unfortunately, she doesn't always listen to that.

A banner better day

When you live in a nursing home, there are so many contrasts. One part of one day can be simply awful, and then the afternoon can be stellar. Maybe nursing homes are just a microcosm of what happens in society each day. Maybe I should remember that the next time my world (inside the nursing home) turns topsy-turvy .

This morning I had a lot of trepidation after yesterday's "morning from hell".

But it seemed like the planets were aligned, or God was smiling because things went better.

A different night shift nurse actually brought my thyroid pill in at 5 AM.

Then, she came in much earlier to get me going for the day.

I was up before 6:45 am. and in the bathroom.

I headed to the shower around 7 AM. Unfortunately, I had to be weighed which is part of my Monday morning.

Two aides gave me my shower which saved some time.

Then, they took me to my room where I was dressed and readied for the day.

I was asked if I wanted to eat breakfast in the dining room and I said I would. When I got there, they were not very many residents left.

There was an aide available to feed me my breakfast. Even though I could tell my breakfast had been sitting for a while, I ate it because it got to me in a timely fashion.

As I said, with cooperation, things can turn around for the better, or definitely for the worse, in a nursing home.

A morning from hell

This weekend on the nurse aide schedule must just be doomed. This morning I again didn't get started early enough with my morning routine. I wasn't out of bed until 7:30 a.m.

I was in the bathroom for a while and when I got out my aide had to leave and go to the dining room to feed other residents. The problem was I had not had my breakfast yet. I wish she would have just thrown a blanket over me and taken me to the dining room with her. At least I could've been fed my breakfast.

As it was, she had to leave me with the TV on. I had her put a folded towel under my left thigh, which was sore from the pressure of sitting. I thought maybe having a towel under it would relieve it.

It worked for a little while. But, twenty minutes later my leg started to throb. It was numb and tingly. I started calling for the nurse who was in the hallway passing medicine. I thought maybe she would bring mine down and adjust my leg. But neither the nurse, nor anybody else came.

I tried everything I could think of to get my left leg to stop hurting, but nothing helped.

I just started to call nurse, nurse and please help me every few minutes. As the pain increased in my left thigh, I got louder and longer. Even though I was yelling nurse, nobody came.

I was so dejected and in pain I couldn't even pay attention to the TV.

Then I heard my roommate on her cell phone. I wondered if she was calling her daughter to tell her about my situation.

A few minutes later, I was still calling for help when her daughter came in. I told her I had been on the shower chair for over two hours. She asked me why and I told her there weren't enough aides to get me off the shower chair. My roommate's daughter  said she was going to go complain, and started out the door. I told her I had complained enough for just about every resident in the nursery monitor I use as a call light.

A few minutes later she came back and told me that she is going to report what happened to me.

Several minutes after that the nurse came in and put a washcloth under my left thigh, which I knew would relieve the pain temporarily, which it did. She said she was sending the aides in to help me and she didn't want me to yell at them because I was on the shower chair for so long. I told her I wasn't going to yell at them.

I learned a bit earlier that another aide was coming in at 10 AM. The same scheduling happened on this same Sunday aide schedule a month ago.

In less than an hour I was washed up, hair combed, teeth brushed, and set up at my desktop PC.

I really hope I won't experience this soon again.

Fifty minutes in the bathroom

This same weekend is messed up every time it rolls around. It's strange because they just hired a new aide. But, she doesn't know the lay of the land yet and is probably being pushed around.

I didn't get up even close to my usual time this morning.

I was ready to get up at 6:50 am. I said into the nursery monitor that serves as a call light, that I needed to get up.  I said that same thing into the nursery monitor every five minutes. My roommate heard me and she went out into the hallway to find the aides.

They didn't come in my room until after 7 AM. They got me up and into the bathroom.

When I was finished, my aide fed me my breakfast in my room. I knew she would be busy in the dining room, so I asked her to put me back in the bathroom. I told her I couldn't sit there very long because my leg was already hurting from being on it for over an hour.

When I was finished, a long more than fifteen minutes had passed, my aide did not come back to check on me. I started calling nurse, and saying I needed to get out of the bathroom, and off the shower chair which was hurting my left thigh. But nobody came.

Many minutes later, my roommate heard me calling for help. I don't know if she put her call light on, or if she called out into the hallway. But, soon, my aide came in.

I was beside myself with pain in my left hip from sitting on that shower chair seat. The pain was causing me to cry and perspire and I was quite uncomfortable.

I told both aides who came in that I couldn't quite handle being left in the bathroom, on the shower chair, and in pain for fifty minutes.

One of the aides said that I should have known where they were. It's not that I didn't think they were busy, it's just that I think an aide, or one of the nurses, should've checked on me.

Conversation with an aide

Dudley, my name for the male aide on dayshift, has given his two weeks notice. I find that surprising since he's good at his job. He also shows up. Although, he may have called off once since I've been here.

This morning he told me that two dayshift aides didn't show up. Although he thought one might just be late, he was pretty sure the other one wasn't coming. I told him it's amazing how aides can do that and the facility can't afford to discipline them in any way. They really need every one of those aides, so badly. Most of their coworker aides are angry when other aides call off, or don't show.

He told me that there has been a lot of confusion and disorganization here in the past. He said at one time the administrator, director of nursing, and assistant director of nursing all quit at the same time. He also said there was a female administrator here who was quite successful in her job. But, unfortunately she left it.

Dudley said he thought things would change when the present administrator arrived. If that's when a different company bought the business, he might have thought their "person centered care" and "spirituality" endeavors might change the way care was given.

Dudley said instead of things getting better here, they're getting worse. The aides are more unreliable and quit all the time. However, I know the unreliability of aides, housekeepers and dietary staff is an industrywide problem. Aides usually take time off, or quit and come back, when they feel they're getting burned out.

It's interesting that Dudley seems pretty connected here. Although he lives twenty to thirty miles away, he seems to be comfortable here. It can't be easy going elsewhere.

Dudley said he doesn't mind doing the job and feels he can get the hall I'm on finished himself. I think it bothers him that he needs help to do me.

One thing I have noticed is that Dudley's moods change frequently. The down, angry mood he falls into gives me a strange feeling. I wonder if he's angry because he works here.

I hope he finds a job that makes him happier. I also hope this facility finds a way to get good aides and nurses to stay longer.

My friend helped me out

I moved here August 30 and my sister put things where she thought they could be found. But, unfortunately her one day of organization did not allow enough time. I do wonder if she made a list. It would be helpful to have it now, but I don't. It's hard to remember where things were put, when she's in Florida and I'm in Ohio.

My things have been sitting right where she left them. I knew my important things were put somewhere for me to find. But I had no idea exactly where they were.

The day I moved in was such a swirl of things going on, here and there. I wish I had overseen all the things I need for everyday life packed where I knew exactly where they were. However, there was no way I could do that.

Instead, my friend Beth who visited the other day helped me. She had difficulty helping because I left wrist has been broken since mid-September.

Since she didn't want to take me out, we took advantage of the time and she went through a large tote that my sister put in the closet. We threw a bunch of things away. I also gave her some of the things I no longer need. Some things I wanted to throw away she took for her grandchildren to play with. But most of it went in my bedside stand, since that's where it was at my previous nursing home.

Beth also helped me go through a couple bags of midweight clothing. I told her the facility has misplaced some of my clothing, or it has not been returned. I have lost several tops and several pairs of pants.

Beth helped me find stretch jeans that will get me through most of the fall. Then we think maybe my other clothing is stored in my minivan in the parking lot. I remember clearly that my sister had a couple of totes and the admissions coordinator said – the facility had no place to store extra clothing.

I appreciate my friend Beth going through my things with me. My sister had to endure Hurricane Irma in September. Now, she is off on a long time planned vacation with her husband. She will visit me sometime after she returns.

It's hard to live in a nursing home and need the help of family, and not have it. Nursing homes ought to make sure they have either staff or volunteers to assist residents to put their room together when their families are unable.

I'll feel like a vagabond, until this room is in shape.

They all learn to feed residents

The thing I'm most impressed with at this nursing home is that everyone is trained to feed residents, especially the managers. That says a lot about a company. Clearly, they do not want their managers to be too far removed, or feel that they are above the residents they care for.

The very first weekend I was surprised to see the administrator here feeding residents on a Saturday. In my over twenty-one years in nursing homes, that's the first time I've seen that.

I seen days when most of the managers are in the dining room feeding. Today was a prime example. The administrator, chaplain, dietary manager, and a speech therapist were all feeding at the same time. It seems like all the employees must feel like a team working together. I don't hear a lot of sniping, although I'm sure it happens. It just doesn't happen out in the open like it did at my previous facility.

This is also the first nursing home where I've lived that has had union. It doesn't appear to be any different from a nursing home without one. I would think that full-time employees are probably paying union dues.

This facility is also pretty quiet. There is no loud music playing in the hallways. Not many residents have their TVs turned up loudly, but, there are a few who do.

I hear no yelling by staff or residents in the hallways. I heard an awful lot of it at my previous facility. So, this place has served as a respite.

It appears that all the employees:, nurses, therapists, aides, dietary staff, and housekeepers being busy working together for a common goal.

I think watching workers working, but not complaining about it, is uplifting. It makes me feel better about living my life here.

The difficult part – adjusting

I guess it was easier when I was new to this nursing home. Now, I've been here a month and I sort of know what's going on. Unfortunately, I'm still feeling uncomfortable.

Even though this nursing home has some amenities I've wanted, I'm still nervous and afraid.

My best friend, Beth visited today. It was kind of weird. I was able to see her pull onto the drive and come up to the building. I couldn't do that at my previous nursing home. There were no windows large enough to watch what was going on on its residential street. I missed all arrivals and departures of family and friends. It was strange to finally see one.

Beth likes this place and the way it looks. She likes the fact that she does not have to sign it as a visitor. She likes that it's bright and airy, cozy look. I have to say the decor does make me feel less anxious. I'm wondering if the looks of the place truly make that much of a difference.

The thing that does make a difference is cleanliness. I never could stand my nursing home room to me dirty or cluttered. Here I enjoy that it is clean.

But, today, over a month later, I still do not feel like the captain of my ship.

I'm settling into a different environment, where I'm no longer the strangest resident. I'm no longer the only one with a power chair.

But I feel far away from my sister. My friend Beth did say I could move near her if I wanted. But I know in my heart that is not something I should really do.

I want and need someone to help me feel like me again. Even though I have no funds to hire helpers, I still need help.

Is it realistic to depend on others to help me meet my goals and get done what I need done?

I'm wondering how I keep everything organized here. It was falling apart long before I left my previous facility.

Is there anyway that I can make it feel like it's coming together here?

Many waiting for a while to be fed

I was shocked when I entered the dining room, thinking I was late, and found that no one had been served. It didn't even seem like there were that many residents in there to feed..

I moved around to see what was going on, then left, and returned. I asked where they wanted me to sit and pulled in there. I had the feeling I was going to sit in that dining room for a while.

I was feeling strangely because one of the office people, or managers, fed me. This facility has a different philosophy from the nursing homes where I've lived. At my previous facilities the aides did mostly everything and sometimes the nurses helped.

It just feels strange having managers in the dining room routinely. But, I guess they're showing that they are no better than the aides they employ who feed the residents. I wondered if they've had feed training, and I think they probably have. If it were not for the managers feeding, they would need more aides here.

It's amazing that during my first few weeks the food I was served was warm. Now, it isn't necessarily, and I wonder why.

The hot water device is broken. I don't know how they're heating the water for their large thermal carafes, but I know this morning my aide put tapwater into my cups and then failed to microwave it long enough. That meant my tea was barely warm.. This morning, my tea was barely warm.

At lunch the assistant business office manager fed me part of the meal, and the dietary manager fed me the rest.

I know they want me to wait down there until the meal is served and then wait afterwards..

They really don't realize how difficult that is for me.

Dudley, the male aide, thinks I'm a problem

I guess it shouldn't matter whether the male aide likes me or not. After all, I'm not here to win a popularity contest. I'm here to be taken care of and to try to have some type of meaningful life. Everyone, mostly my sister, thought this nursing home could provide a better environment.

I will call my aide Dudley, instead of using his name. The first weekend I was here I noticed how he strutted around like a banty rooster. I thought he was pretty impressed with himself and thought that meant he thought he was a good aide. I hoped he was good and would help the others.. I wanted to find aides here more capable than those at my previous facility.

Dudley was my aide for three out of the first four days after I came. I told him I would rather not have a male do my washup. But, I realized I was new here and had to go with the flow. If Dudley was good, he was also quiet, and hardly said anything.

I know I'm the one who probably did all the talking. I praised him a lot, because he was good. He got me washed up, to the bathroom and back. Then, my breakfast was on time and the tea was hot. The only thing I didn't like was the way he washed me without incentive. I expected a few difficulties. I was kind of nervous and probably put up with things that I wouldn't all the time. I thought maybe they decided Dudley was the one who should do me on my first morning here. It was kind of coordinated like it was supposed to make me feel welcome and comfortable.

But the next day was just god-awful. Dudley was not here and it was quite apparent. I had to work with different aides and for one reason or another things were out of sync. I did get ready for the day, but it was much later. I also got accused of keeping an aide in my room for three hours. Actually the occupational therapist washed me up that morning after I was left in the bathroom for over an hour. I felt awful because they thought I took up too much time. My morning routine would move along if the aide could expedite the process. But some aides have a hard time with that.

Dudley was also my aide on the first weekend. He got me ready on time. But I noticed he was rather sullen about doing my care. In the next four weeks he seldom was my aide. And when he was he complained that my washup took too long.

It's four weeks later and he acts like he no longer wants to come in my room. To me, he acts like taking care of me causes the little hairs on the back of his neck to stand up.

I wish I didn't feel I am somehow responsible poor his feelings about me. Nevertheless, it does bother me. Seeing him make a face makes me uncomfortable

I'd like everybody to be comfortable with me and I know not everybody is. I suppose I seem like I'm needy and greedy and went to much help to some.

But, I'd hope that Dudley can understand that being involuntarily discharged from your second nursing home is difficult.