A Hard Day

In the early afternoon I sat in the lobby area finishing up a daily note after seeing a patient off for a doctor's appointment. As I finished I looked out the window and saw a family dressed in suits and ties and dresses. A couple of them were carrying flowers and one was pushing their mother in a wheelchair. They were bringing her back after attending their father's funeral. She had been one of my patients several months ago. Her dementia makes it difficult to have a conversation with her but she is always pleasant and has a smile for me. I can't help but wonder if she will remember why her husband no longer comes to visit.

I shut my computer and headed around the corner in time to see another family leaving the room where their mother's body now lay as an empty shell. There were tears streaming down their cheeks. It hurts, even though she was elderly and her body was worn out. She too had been one of my patients. The things she said cracked me up sometimes. Upon return from the hospital she commented several times, "I can't believe they kept me at the hospital all that time without feeding me except through my arm. And they just let me lay in bed and didn't get me up. Now I just don't have any energy." Every time a resident dies, part of the personality of the place dies as well.

Later in the afternoon I walked by the office as one of the administrators explained to another resident and his wife that we were going to have to stop therapy with him. I was glad I wasn't responsible to have that conversation. It is hard to see someone stop progressing and even regress, especially someone who works so hard in therapy. He never complained though he would sometimes express frustration when his legs didn't cooperate. He wanted to go home and, even though the doctor had told him it wasn't safe, he and his wife still held out hope that he'd get better. Having the therapists tell him we couldn't continue must have felt like the final blow. We want to help people get back home and it's hard when that doesn't happen.

July 4 at the Lakes

I grew up 30 miles from Okoboji but we didn't make the trip east very often during the summer except to go to the Conference. We definitely did NOT make the trip on July 4. Staying up to watch the fireworks was already a big enough stretch for my family without adding on the drive home complicated by "all that traffic". This year I got to see the craziness of the 4th at the Lakes in person and here's a few reasons it wasn't that bad.

• I had already learned on Memorial Day weekend to go down to the light when I want to turn left.  
• On a few Friday afternoons as I headed home from work I've been caught behind enough cars at a light that I had to wait for it to cycle through 2 or 3 times before I could be on my way. But on July 2nd and 3rd I worked in Spirit Lake so I didn't get to see what traffic was like then.
• I spent most of the 4th celebrating with my cousin Nick, and his bride, Dondi, at their wedding. which began with a 2.5 mile run at 8:00, a wedding at 1:00, followed by a reception with grilled hamburger and pork patties, potato salad, chips, ice cream, and a dunking tank which the kids throughly enjoyed. The traffic didn't affect me, but Dad said the line at the 4-way stop at Vick's corner was 1/4 mile long. In normal circumstances, 3 cars would be considered a traffic jam.
• As I got home, my next-door neighbor was headed out for a bike ride. We talked of going to see the fireworks on our bikes and I told him that one of my patients had said the best place to see them was at Des Moines beach. He went to scout it out and found a house under construction with a small dock directly across the lake from the Park. It was a perfect spot for two introverts who aren't night owls. From our vantage point we could hear the music and the announcer without having to deal with the hordes of people. (Later someone told me there had been so many people in the area of the Park that she couldn't even hear the music.) We also had a great view of the fireworks when they began. At the end, Matt thought it was one of the best firework displays he'd ever seen. I decided not to mention those at the top of my list including the show for the G-7 in Lyon, or the competitions I saw in Germany and in Clear Lake, IA. For NW Iowa, it was good. And the best part was I was home and in bed by 11:00.

What's your plan?

This week I received an email from an aunt saying, "People rarely want to leave their homes, though I have known a few people to make the decision to move from home to assisted living of their own volition." She went on to mention two people who had decided to move. I work in a nursing home so most often my patients are facing the question of whether or not they can or should return home. There are more that want to go home when they really shouldn't than those who willingly stay.

No one wants to be in a nursing home even if it is called a care center. One woman I've worked with wants to go home. "I don't want to spend the rest of my life here!" Never mind that she needs two people to help her move from her recliner to her wheelchair. I think she would be happier if she accepted the reality of her physical limitations and was content where she is. Stir in a little dementia and it is hard to reach that state of acceptance. Another friend cared for her mother for a time in her home but there came a point when it was no longer safe to leave her alone for very long. Even after a year in a nursing home her mother still doesn't understand why she can't live at home even though she appears to be quite content where she is.

This week I had a conversation with one of my patients that went something like this. 

Me: What do you do during the day when you are at home?

Pt: I sleep a lot.

Me: Do you help your husband with the cooking?

Pt: Yes, we do that together.

Me: How about the laundry?

Pt: No, that's in the basement and I can't get down there any more.

Me: What did you do for fun?

Pt: (pause) I can't think of anything.

Me: What do you like doing here?

Pt: I like the exercise class, bingo. I've been going to all the activities and I like them.

As a therapist it has been wonderful to see the change in this woman. The first time I worked with her she couldn't hold her eyes open and it took two people to get her to the bathroom. Now her eyes are bright, she greets us with a smile and she just needs some supervision for safety when moving around. The marked improvement has come, in large part, because she has things to do. Sure, she still takes a nap or two during the day, but she isn't sleeping for hours at a time. And now she is talking about going home where it seems she will end up back in the same situation as before without the extra stimulation.

Last week another patient decided that she was going to stay in the nursing home. Could she have made it at home? Yes, she likely would have done fine. Her health has improved and she has family in the area who are helpful. But as she thought of being in that house all by herself, she decided that she would rather stay. Her family and the staff applauded her decision.

When I was a teenager, a woman in my church commented, "It is always better to make a move before you have to." I couldn't agree more. Making the decision to move to a higher level of care is easier when you feel like you are in control of that decision. Of course, life throws some curve balls at us that we don't expect and the move has to be made before we had intended.  But thinking through the different scenarios and talking with your family about different options before you ever expect to need them will likely make the move a whole lot easier -- even when dementia makes it harder to understand why you can't be at home.

A Silent Retreat

Since January I've been going through the book Sacred Rhythms which talks about spiritual disciplines beginning with silence and solitude. At first glance, more solitude isn't something I need as I already spend a lot of time alone. However, that time is usually not silent and I rarely think about the solitude as purposeful time with God. I found it difficult to be silent and listen in God's presence for even a few minutes, much less a whole weekend. Yet, I do long for deeper intimacy with him so when I came across a silent retreat sponsored by Christos Center I decided to sign up. I had little idea what to expect but as I packed, I resisted the urge to bring a novel along. My bible, journal, and some other paper should be good enough -- right?

We met at Villa Maria where several retreats were happening at the same time -- and they weren't silent. We began with getting to know each other over supper where I talked primarily with Julie, who had spent a year in France 30 years ago. After the meal we met together to go over the plan for the weekend. We went around the room and briefly introduced ourselves and what our expectations were. As we left the room at about 8:00 Friday evening we entered into silence. There were smiles of greetings in the hallways and at meals but for the most part we gave each other plenty of space. I had thought that meal time would be awkward, but that didn't turn out to be the case at all. We got our food in the main cafeteria which was full of chatter from the other groups. I had a sense of relief when I got into the smaller room reserved for us where relaxing music was playing "so you don't have to listen to each other chew." It was quiet and peaceful and everyone was lost in their own thoughts. I had no desire to break that for them or to have anyone speak to me. I was content to mull over whatever it was I had been thinking about before I came in.

There were regularly scheduled times of meditation where the leader of the weekend spoke briefly but none of it was mandatory. I only attended one of those which lasted about 10 minutes. I just wanted to stay where God was directing my thoughts as I spent most of the day outdoors. I talked for about an hour with one of the spiritual directors which was helpful. I went on an hour walk in the woods and the meadow which was part of a state park. There was a few times I was bored and was wishing for a novel, but in the end I was glad I could just sit. With my nose in a book I would have missed the soaring eagle in the morning and a soaring hawk later in the afternoon. It was also part of slowing down that I needed so I would stop thinking and listen for God's voice. I'm always doing something even if that is simply reading or listening to the radio as I fix supper. By the time it was over, I felt much more settled and peaceful. I was glad to talk again but I didn't mind silence on the drive home and my mind wasn't flitting from one thing to another.

Sunday morning we met for the Lord's Supper together and we broke the silence by giving a brief report on how God had met each of us. It was different for everyone. God wanted me to experience again that he loves me and he is with me. The passages that God brought to mind were:

He rescued me because he delighted in me (Ps 18:19)  and 

The Lord your God is in your midst, a might one who will save; 

he will rejoice over you with gladness; he will quiet you by his love; 

he will exult over you with loud singing. (Zeph 3:17)

On the way home I realized that God tells us that he loves us over and over again in Scripture because we need to hear it over and over and over again. The context of each of these verses show that God is with us and to what extent he will go to rescue us, to rescue me.

A silent retreat may seem like an oxymoron but for me, it was a precious time. I highly recommend it.

Efficiency

Every job has its own way of measuring success and every business has key benchmarks that ensure they actually make some money. After years of working for a non-profit where my monthly salary was "discovered" I'm still working on reaching the major benchmark in the therapy world: efficiency. Medicare, or some other health insurance, pays for all the therapy my patients receive and they reimburse the company I work for according to the amount of time I spend with patients within a certain target range that varies from patient to patient. Ideally all of the therapists end the week at 70-80% efficiency. In other words, we spend 80% of our working time with patients and 20% doing other things: documentation, talking with staff or family, or just getting from one room to the next. In March I was pretty consistently in the 70-80% range so I was feeling good about myself. But then...

Three weeks ago I was moved to the nursing home in Spencer. In many ways it has been a good move. It takes me longer to get there (but gives me the opportunity to catch up on my favorite podcasts), but I'm working with a lot more people who intend to go home and will actually get there. That means there are more things to work on besides making sure they can get dressed and to the bathroom on their own. I've enjoyed the change and the challenge. However, my efficiency has taken a major hit. Instead of having one new patient every couple of weeks, I have 3-5. Today I saw one new person and spent 29 minutes with her. (I bought a watch with a timer on it so it is easy to keep track -- when I remember to push the start button upon entering the room.) It took me at least that long to write up the Plan of Care which includes the goals of what the person needs/wants to be able to do to go home. So about the best I can do with a first visit is 50%. Add in two discharge summaries which can take about as long, an updated plan of care, and finishing two Plans of Care from last week that I had only done the bare minimum on before leaving on Friday, and I was once again below 60% for the day. It will get better since I am getting lots of practice in filling out the paperwork. And maybe I'll get better at tuning out the distractions of the cartoons the resident down the hall likes to watch, co-workers talking to residents or each other, or other staff coming in with the latest update. And for the time being, my supervisor has my back with those higher up in the company. But soon, I will no longer be able to say that I'm doing discharge summaries on people that I only saw once or twice so I have to read all the notes before I can say anything coherent about how far they have come. Until then, I'll keep plugging away even as I take the time to poke my head into a room to see what the resident needs. Today all the woman wanted was for her table to be pulled over close enough to her bed so she could reach her water.

What will you be singing?

One day I observed a hospice worker sitting in the dining room with one of the residents of the nursing home. As I walked by a couple of different times I heard snippets of prayer and the quiet singing of a hymn. The resident gave only slight indications that she was aware of what was being said. A couple of weeks later, this same resident was sitting in her wheelchair near the nurses station where she often sits in the afternoon. Her eyes were closed but as I walked by she tilted her head back and began to sing, On a hill far away, stood an old rugged cross... 

As I continued on with my day I wondered what song I would be singing. What songs will people sing to my generation when music is the only thing that lifts some of the fog of dementia? It used to be that every church sang more or less the same songs. That is no longer the case. When I was looking for a church in Minneapolis I remember several Sunday mornings when I didn't know a single song that was sung. In time I grew to know (and love) the repertoire of the church I was a part of. The music was primarily from the 21st century and the lyrics were filled with solid truth providing encouragement to my soul as they ran through my head throughout the week. Some of the songs we sang were written by church members and were an expression of our corporate life with God. But I have not sung most of those songs since I moved. 

Last weekend I was in Minneapolis, visiting my church family there. We sang one hymn and its words spoke right to my heart, bringing tears to my eyes and they rang in my mind throughout the week. 

How firm a foundation, you saints of the Lord,

Is laid for your faith in His excellent Word!

What more can He say than to you He hath said,

You, who unto Jesus for refuge have fled?

"Fear not, I am with your, O be not dismayed,

For I am your God and will still give you aid;

I’ll strengthen and help you, and cause you to stand

Upheld by My righteous, omnipotent hand."

"When through the deep waters I call you to go,

The rivers of sorrow shall not overflow;

For I will be with you, your troubles to bless,

And sanctify to you your deepest distress."

"When through fiery trials your pathways shall lie,

My grace, all sufficient, shall be you supply;

The flame shall not hurt you; I only design

Your dross to consume, and your gold to refine."

"The soul that on Jesus has leaned for repose,

I will not, I will not desert to its foes;

That soul, though all hell should endeavor to shake,

I’ll never, no never, no never forsake."

My experience of working in a nursing home has given me another reason why the good old hymns should continue to be sung along with new songs. They give us a common vocabulary, a common experience across local expressions of all denominations and all generations. And that is important, not only for the current elder saints, but for all future generations.

I chose this YouTube version of How Firm A Foundation simply because it is the sound of God's people singing the truth of God's promises. (I tried to embed it below, but in my preview it isn't showing up.)

The guest room is open

I've never had a guest room before. Since I moved in it's been used as a storage space, an office, and a place to iron. In the back of my mind I wanted to get a bed so I could actually have overnight guests but that meant getting rid of the boxes. My original good intention of emptying one box per day lasted about a week. Thankfully the February mattress sales coincided having my first overnight guests on the calendar. Deadlines help since I've always worked better under pressure. I bought a bed and my parents come over to let the delivery men in while I was at work. They even made the bed, hung a couple of pictures, and put the lamp together. I was in business.

Last weekend four friends from Minneapolis (one now living in South Dakota) gathered at my place to celebrate a birthday. I scrambled a bit on Friday evening doing the cooking prep and Saturday I finished up the last minute cleaning. Thanks to their being a bit later than expected I was actually sitting down to read a book when they arrived. We had a wonderful time together with much laughter and good food. The apartment seemed quiet when they left.

A salesman joked that I probably didn't want a real comfortable mattress so guests didn't overstay their welcome. Two people have declared it as very comfortable (at least for one night). So come visit and see if it passes the test for several nights in a row.

Playoff basketball

Last Friday night I decided to attend the girl's high school playoff basketball game between Okoboji and Hartley-Melvin-Sanborn. I went with the intention of cheering for Okoboji. After all, I live in Okoboji and work in Milford (where the actual school is). By the time I arrived the Okoboji side of the gym was full so I found a spot among the HMS fans. After a few minutes of watching as I munched on the obligatory popcorn, I couldn't help but pull for HMS. They were a senior dominated team that passed the ball well and had some sweet assists. They also played hard on defense. Those two things make basketball a team sport and a beautiful game. Okoboji has only 2 seniors but a couple of key players who had a soft shooting touch both inside and out. They played some tough defense as well and hit their free throws at the end to hold off the HMS come back and win by 7 after being up by 16. As a reward for winning, Okoboji got to play Unity Christian, the undefeated #1 team in the state whose average margin of victory has been 36 points a game. Okoboji turned out to be pretty average and was defeated by 38 points.

High school basketball has plenty of travel calls, turnovers, and missed shots. But it also has fans who make the cheerleaders irrelevant and no TV time-outs or instant replay to interrupt the flow of the game. I'll be watching/following the state tournament next week to see how the Northwest Iowa teams do. One of my co-workers also refs high school basketball so our morning conversation has often included the latest results. Our patients listen in and we've learned that some of them have been listening to the games on the radio. As we (therapists and patients) follow the area teams next week we'll try to remember that we are there to do some therapy. I can only imagine what it will be like when March Madness rolls around.

Drag Races

On my daily drive to work I drive between East Lake and West Lake. I've observed the skating "rink" shoveled out on West Lake with no one enjoying it when I go by around 8:30. This week the old car was parked on West Lake where it will sit until it falls through the ice. You can bet on when it will fall through the ice after which first responder divers will use it for practice before it is pulled out of the lake to dry out until next winter. Last Wednesday I noticed snow being removed over a long stretch on East Lake. The next day flags were being placed in the ice at regular intervals to form lanes. Friday one of my co-workers noticed a Zamboni out on the ice. At least six of us were in the therapy room discussing the question of the day, "What is going on?" Google didn't even have the answer. Another co-worker walked through the room giving the name of the person to call. The next thing we knew, one of our patients was on his phone. After a short conversation he reported, "snowmobile races."

Saturday I was scheduled to take Elizabeth, my niece, and Vicky, my sister-in-law from Dallas on an outing. Elizabeth wasn't feeling well so Vicky and I set out for the Lakes. The day was warm (40˚) and sunny so it was a great day to stand on the ice and watch the vintage snowmobiles drag race for 200 yards/meters down the ice. Vicky and I watched for almost 2 hours as all her senses were filled with northern culture: the sound of revving engines and burst down the ice (I was wishing I had brought some ear plugs), the smell of diesel being burned by old engines, the feel of the cold ice under our feet, the sight of children playing and being able to identify the winner from 120 yards or more away.... Vicky was actually quite good at picking the winner, even when it was close. The start made all the difference in the world as there was only a couple of come-from-behind victories. I never did figure out where the start signal came from or how they actually decided the ultimate winner in each category since the same snowmobiles raced against each other numerous times in what was announced to be the "final." We left a couple of hours after we had arrived feeling revived by the stark contrast from our individual daily routines even though we had little feeling left in our feet.

This isn't the way life should be

Every work day I walk the halls of a nursing home. I see lift chairs, call lights, chair alarms, wheel chairs, walkers, naps at all times of the day, and smiles. I hear confusion, frustration, incomprehensible babbling, the same story 100 times, cries for help, and laughter. I sense despair, resignation, loneliness, and deep love between spouses who have been married for over 50 years. For all the kindness shown, the good care given, the love demonstrated, the longer I'm there the more I want to rebel. This isn't the way life should be. No story should end this way.

Today is John's birthday, his 4th since he died 3 years ago. Some would say that he died doing what he loved -- farming, that he had a good life. And he did. We don't know what heaven is like but I can imagine Grandma baking him a chocolate cake with 44 candles and Aunt Suzanne organizing the party. Whatever his day was like today, it was great. But for the rest of us, even as we remember the twinkle in his eye, the welcome sight of his red pickup, the jokes he played, his faithfulness and love, we grieve. This isn't the way life should be.

Today Mom started chemo treatments. Two years ago she had endometrial cancer of the uterus. If you have to have cancer, that's a great place to have it since it's all contained in a sack that can be easily removed. According to the doctor, there was a 2% chance that it would reoccur. Just 3 short weeks ago, an x-ray discovered a nodule. Numerous tests later, the verdict came back that it is the same cancer and it is observable in two places. The doctor is confident that the cancer can be beaten but the the weapon is chemo which is short for all-the-side-effects-that-come-from-poisoning-yourself-for-18-weeks. Whatever the long range outcome, this isn't the way life should be.

I could broaden the scope to the lives of others I know, to the daily news, but for now there is plenty in my daily life that brings out a mixture of sadness and revolt. This isn't the way life should be. This isn't the way life was meant to be. This isn't the same world God looked at as he declared, "It is very good."

This morning I read,

All flesh is grass... the grass withers, the flower fades, 

but the word of the Lord endures forever. 

A couple of pages over it says,

...those who war against you shall be as nothing at all. 

For I, the Lord your God hold your right hand; 

it is I who say to you, "Fear not, I am the one who helps you." 

Two chapters further is a favorite of our friend, Mary Pat, 

Fear not, for I have redeemed you; I have called you by name, you are mine. 

When you pass through the waters, I will be with you; 

and through the rivers, they shall not overwhelm you; 

when you walk through the fire you shall not be burned,

and the flame shall not consume you. 

For I am the Lord your God, the Holy One of Israel, your Savior. 

Paul prays that we would know the hope that God has called us to. My favorite definition of hope is a confident expectation of good. And the good God promises is to make all things new. He doesn't come to fix things. He will remake it all. 

Then I saw a new heaven and a new earth, 

for the first heaven and the first earth had passed away...

Behold the dwelling place of God is with man. 

He will dwell with them, and they will be his people, 

and God himself will be with them as their God. 

He will wipe away every tear from their eyes, and death shall be no more, 

neither shall there be mourning, nor crying, nor pain anymore, 

for the former things have passed away.

We are not yet at the end of the story. It's more like the end of the first section of the first book in a trilogy. I need to remember there is so much more yet to come.

Odds and ends

I started working on a more substantive post, but am too tired and too distracted by football to do it justice so that will have to wait for another day. In the meantime here are a few odds and ends from the past few weeks.

For the first time in my life, I'm hearing my name and people aren't talking too/about me at all. There are several women named "Alice" in both nursing homes where I work. And even when I know staff a few rooms down aren't talking to me, my instinct is still to turn my head. I explained this to a man named Dave and he said he usually doesn't pay attention when he hears his name because most likely he is not the one being referred to. Maybe I'll eventually get used to it.

This week I was trying to get a gentleman to stand up and walk 20-30 feet. His response, "Why would I do that? I'm over 90 years old." I wondered what that had to do with anything but he seems perfectly content to let others do everything for him. I am trying to learn to motivate people to work a little in order to be as independent as possible. That motivating can be difficult, especially when some dementia is involved.

I've been "sick" in the last month more often than I've been in the previous 4 years. I only missed 2 days of work, but there has been quite a few days I've felt like I've been fighting something and by mid-afternoon I've been ready for a nap. It seems that most days, by the time I make supper I don't have much energy for anything else. Thankfully, I haven't gotten really sick, but hopefully I'm not assisting in passing around the stomach bug or influenza between the different residents I come into contact with. I wash my hands more times a day than I can count.

I actually got my laundry done this weekend without leaving a Kleenex in a pocket. That makes a big difference when the primary items are black scrubs.