Sharing the Pain

How do we know how deep we are to feel for others? I know some people going through difficult times. In each case there is little I can do to actually help. I can be supportive and encouraging but beyond that, I can’t do much to actually improve their situations.

A dear friend is suffering. In the past few months she has endured a family tragedy, health concerns for her and her husband, heart-broken parents who are themselves in fragile health, and much uncertainty in regard to her job. I want so much to make things better for her but always feel I come up short.

Last week I tried to help another family. This past June two students from m son’s high school and their fathers were killed in a small plane crash. The high school has been trying to help the families by providing meals. Since my transportation issues have been resolved, I finally signed up to provide a meal. Calling in advance to confirm delivery, I spoke to the Mom. Our conversation left a hole in my heart.

She expressed how wonderful the high school has been and how helpful the meals are. When she lost her husband she went back to work for the first time since she had children. I asked their ages. “Three girls,” she said. “Ages 11, 13 and 14. Not only do I have to be Mom and Dad but I have to deal with all these hormones as well. It’s nice not to have to worry about what’s for dinner.”

She asked if my son knew her son. I had to admit that he did not. “My son is a junior. He works so hard,” I said. “But he doesn’t want to be anywhere else.”

“It’s a great school,” she said. “But we never got that far.”

Feeling my composure slipping away, I politely but quickly ended the conversation. She wanted to talk. The one thing I could do was listen, but I didn’t want her pain to creep any further into my world. I feel terrible about that. I could have told her that my son wears an elastic band etched with her son’s name. I could have offered other assistance. It may not have helped, but I didn’t offer.

The next afternoon when I placed my meal into the coolers on her driveway, I couldn’t help but notice what a lovely home she has. I wondered who mowed her grass. Who did all those other chores that are usually the domain of men? It was a glorious spring day and I couldn’t help but think of how easy it would be to be joyful if there weren’t so much sadness.

I am haunted by our brief encounter. I know that I can’t help by being sad for her or my friend. I just pray that they can see the beauty and momentarily lose their pain in the magnificence around them.

Stepping Out

A few days ago I ran the half marathon in St. Louis. By itself that’s not a particularly noteworthy accomplishment. Thousands of people run. Many are older than me and many are quite a bit faster. Still, this was my first race and I feel a tremendous sense of accomplishment.

I was not prepared for how I would feel when the race was over. The emotion welled up and almost spilled out of me. The exhaustion, the exhilaration, the runner’s high—I’m not really sure what it was. I was also not prepared for the surge of competition I felt the last two miles. I was passing people like crazy—I wanted to finish and finish ahead of those in my immediate sight.

The whole experience was positive. The weather was fabulous—a glorious spring day with blue skies and light breezes. Tulips greeted us at almost every turn. St. Louis never looked so good.

It was thrilling to run by Busch Stadium, the Brewery, the Soulard area, St. Louis University, the pawn shops, and the homeless shelters. I ran by the building where my husband and I used to work (and where we met). I noticed that our former employer no longer occupied the building and realized that all the companies I have ever worked for no longer exist.

The crowd of runners and the spectators were inspiring and encouraging. The many volunteers who provided water and Gatorade were wonderful, although it was difficult for me to toss my drink cups on the street with all the others. I did it, but it just felt wrong. Many spectators held encouraging signs. Two of my favorites: “Your calves look sexy,” and, “If it were easy I would be doing it.”

My favorite part of the race occurred around mile six. My loving and supportive husband was there to snap my picture. And then he said,” I have a favor to ask.” It sounded like he wanted me to pick up his dry cleaning or perform some other domestic task, but he only wanted me to call him when I was close to the finish so that he could take another picture. For some reason I found it hilarious that he wanted to ask a favor while I was running.

Speaking of calling, my daughter sent me a text message two hours into the race to ask how it was. Since I had about four more miles to go at that point I returned her message telling her so. I had managed to run for nine miles without using my cell phone. If I do this again I’m not sure what my time goal will be. but I am certainly going to try to avoid texting and running.

While it was never a goal of mine to run a half marathon, I’m glad I did. I only signed up at the suggestion of a friend. I didn’t know how to say no. Peer pressure (and the fear of appearing old) is a powerful motivator. Once I signed up I had fierce regrets. I didn’t think that I could do it. I had all the standard excuses: I didn’t have time to train, I had too many responsibilities, my knees were too bad, etc. Somehow I did manage to train enough and, with the help of some additional strength training, my knees held up.

During the race I kept hearing echoes of advice that I would give to my children. “You can do it,” and “Take a risk. Try something different.” I realized that at some point I had stopped doing that. I had settled into a life of comfortable, no-fail options. It sounds trite, but I felt so alive to have stepped out of my world and into the world of a runner.

I learned a few other things as well. The strength training has helped my knees by strengthening the other muscles in my legs. In fact my knees feel better than they have in years. I also dropped a full pants size. Those two benefits alone could make this whole endeavor worthwhile.

The other benefit was all the attention. People were truly impressed that I did this and went out of their way to say so. My in-laws called. I received numerous messages from friends and other relatives. My aunt called after the race to see how I did. She is 65 and had to stop running two years ago—she told me how much she misses it. That alone makes me want to do it again. Just because I can.

What To Do?

I’m upset with myself because I got upset with my mother. An employee of her retirement community asked her to make cookies for the bake sale on March 9^th. I noticed the reminder note on her pantry door: March 9^th, Bake Sale, Make Cookies. When I stopped in on Saturday she was mixing up her cookie dough. “Mom,” I said. “The bake sale isn’t until next week. Why are you making cookies now?”

“I’m just mixing the dough,” she said. “I’m going to put it in the refrigerator.”

When I called her yesterday she was taking the last of the cookies out of the oven. “Mom, the bake sale isn’t until the 9^th. That’s next week. Why are you baking the cookies now?”

“I just want to get them done,” she said. “I’ll put them in the freezer.”

When I called this morning she was aggravated that she couldn’t find anyone who knew where she was supposed to take the cookies for the sale. “Mom, the bake sale is on the 9^th. That’s next week.”

“Isn’t today the 9^th?”

“No, Mom. I told you yesterday and on Saturday that the bake sale was next week. Look at your newspaper. It’s the second. Look at your calendar.”

“Well, I’ll just put them back in the freezer.”

I know that I didn’t keep the irritation out of my voice, and that bothers me. It really doesn’t make any difference if she makes cookies every day. In fact she makes them at least once a week. She gives them away to the activities coordinators and drivers. I think that they re-gift them to patients in health care. I wonder how many people in health care (or skilled nursing) can actually eat them.

Besides making cookies and knitting slippers, she really doesn’t have anything to do. Since August she has knitted 80 pairs of slippers. A relative asked if she could help make slippers as gifts for patients in a dialysis unit. That request was a blessing. It gave her existence a purpose. Today she is working on the eightieth pair.

The slippers have been knitted. The cookies have been baked. She isn’t capable of coming up with a new activity on her own. I need to find her something else to do.

Bad Medicine

Mom is no longer using the memory patch. We tried repeatedly, but it made her sick to her stomach. The nausea didn't start right away. She had four or five days before she started feeling bad. Uncertain if the reaction was a coincidence or a true reaction to the medication, we tried four times before we gave up completely. Each time I agonized about the possibility of making her sick.

My experience with the patch was an exercise in self doubt. All I wanted was what was best for Mom. She relies on me to tell her what to do, so she had no opinion on whether she should use it or not. My brothers all live far away. Their connection with Mom is a phone call every few weeks. They will listen when I discuss Mom's issues, but they rely on me to use my best judgment as well.

Since Mom tolerated the test dosage just fine, we didn't expect her to react adversely to the normal dose. Since I thought she would be needing this $200 a month medication, I enrolled her in Medicare Part D to help with the expense. After enrollment we received a letter informing us that in addition to the monthly insurance, she would also pay a penalty for not signing up for Part D as soon as she was eligible. I find it ludicrous that she will be penalized for heretofore paying for all of her prescriptions out of her own pocket. Now that she won't be using the patch, she doesn't really need the prescription drug coverage. But she will pay for it anyway. Plus the penalty.

My husband tried to tell me that sooner or later she will require more medications that will make the prescription drug coverage worthwhile. I suppose he was trying to make me feel better, but that would be a bitter pill to swallow.

Dinner and Conversation

On Friday night my husband and I attended a dinner party. It was not a typical dinner with friends. Dinner was prepared by our former parish priest. The priest, Fr. J., is a gourmet chef who frequently auctions his dinners at charity events. In addition to being a great chef, Fr. J. is a charismatic young priest in great demand. After leaving our parish he was assigned to a predominantly African American parish in the city. These days his preferred charities are his underfunded parish and school.

Location for dinner was the country home of our friends, an orthopedic surgeon and his wife, an executive in medical sales. Their permanent home is in a subdivision close to ours. They attend our church and our sons ride to school together. While we have known them several years, we are not close. We were honored that they invited us to their dinner.

Part of the reason we were invited was so that they could show us what they called “Heaven on Earth.” Years ago my husband had suggested they look at this particular property when he learned they were in the market for some acreage. At the time the couple had four children under the age of three. They looked at the property and bought it without looking further.

The house was impressive. They rehabbed the existing 100-year-old structure and added roughly two times more space in an addition. The end result was a country feel in the front rooms with large, open rooms in the addition. The new rooms contained the modern conveniences yet complemented the old rooms in décor and feel. Twelve foot ceilings, large expanses of hardwood with some stone inlay, granite countertops and a wood burning fireplace all contributed to the comfortable setting. The wrap-around porch featured more rocking chairs than a Cracker Barrel. If it had been a different season, those chairs might have looked inviting.

Of the six couples invited for dinner, we were the only ones who had not been there before. Like the others, we fell in love with the place. It wasn’t just the crackling fire, the warm color palette, or the sound of Dan Fogelberg coming from the CD player. There was also a reverence that permeated the gathering space. Our hosts had designed the home as a retreat center and generously opened it up to many groups—high school youth groups, priests, nuns, battered women—just about anyone who asked. Even our two oldest children had been there during a planning retreat while in high school.

The home was not just outside the city limits. It was tucked a mile off a gravel road. As we approached the house it felt as though we were driving over ruts from the wagon train. We had to shoo away the neighbor’s grazing cows to get there. Each window in the house provided a glimpse of woods and ponds and the wonders of nature. The windows were wonderfully devoid of any coverings as no one would be on the outside looking in. Not a single television or computer could be found in the entire place. This house was built to encourage people to talk to one another.

And talk we did. Even though we were just meeting four of the couples for the first time, the conversation never lagged. The common thread that linked the others was their kids. They all had kids in school together. Some lived near each other. The most fascinating discovery was that I met the couple who moved into our neighborhood last June. Exactly two houses sit between our houses, yet I had never seen this couple. Their children are younger than ours, so our universes circle around one another but only overlap on the outside edges. We attend the same church, but it’s a large church and our paths hadn’t crossed.

I ended up talking to Kelly, our new neighbor, most of the evening. Kelly was diagnosed with breast cancer in August. As a seven-year breast cancer survivor, I turned out to be a good listener. I understood much of what she was going through even though her cancer was more advanced than mine and her children are younger. I can’t help but think that we were destined to meet.

The ironies of the evening were not lost on me. The meal was superb, but the company was even better. I had to travel seventy five minutes away to meet my neighbor who lives a short walk down the street. While the evening is over, I hope that a relationship has just begun.

Minor Text

Last night I received some news from Paul, my son in college. The news came by text message. He doesn’t call home too often as he belongs to the texting generation. I fully expect that one day (years from now please!) I will look at my phone and see the announcement that he is getting married. I hope I’m wrong about that.

The news from last night is that he is going to minor in Arabic. That by itself was no surprise since he is in his third year of Arabic studies. Another text stated that all he had to do was write a 25-page thesis and the minor was his. He was just one class short for an Arabic major, and that class wasn’t being offered this semester.

After relaying the news to my husband, we decided that a phone call was justified. We had questions. How did he find out about this? Why did he decide this now? Paul said that he checked into the double major and found that the minor was the best he could do at this point.

While adding the minor is a good thing, this event raised my old fears about this man-child. Who checks into double majors their final semester of college? Could he not have done this sooner? Can he handle another thesis?

As an honors history major, he is required to write a 40-to-80 page thesis before he graduates. He spent the summer gathering his research for his topic. When he returned to school after the Christmas break, he was determined to write a few hours every morning since his classes were in the afternoon. When we asked how the writing was coming along, he said that he hadn’t really started that yet.

He didn’t seem worried. The history thesis is due in April. The smaller thesis for Arabic is due a couple of weeks later. Plenty of time to crank out that 25-page paper, he said. I know that he has written plenty of ten-page papers over the course of the evening. I think that, like me, he composes in his head before committing his words to paper or electronic document. Still, I don’t think he can pull off a 40-plus-page missive in a couple of nights. He will only have one chance to get it right.

Letting him go to do this on his own might be harder for me than actually doing it is for him. Well, maybe not, but it will be hard just the same. I hope he’s not in denial. I hope he’s not over-committing himself. I hope he can find a job when he graduates. I hope I don’t make myself crazy worrying about him.

Helping Handout

Sometimes things happen in places that you would least expect. Sometimes they happen exactly where they are supposed to happen. And sometimes they happen just the way they were planned.

Every week I spend an hour in prayer in our church’s Eucharistic Adoration Chapel. The one hour of usually uninterrupted quiet is very precious to me. I use the time to read scripture and reflect and to pray. I usually write my prayers in a prayer journal. I find that I need the discipline of writing to focus in totally unstructured time.

Tonight I was halfway through my hour when a strange man joined me in the chapel. This happens occasionally as people drop in to pray. I could tell as soon as he entered that this man was not interested in prayer.

He walked with a cane and was obviously disabled. Even so he removed his show and sock to prove it to me. He said he was looking for Fr. B. Father, he said, had been a good friend of his for over fifteen years. In a span of less than ten minutes he managed to tell me his life story. Well, not his life story but certainly his current situation. He was hit by a car going 55 miles an hour. He spent three months in the hospital, during which time Fr. B. visited him every week.

At the time of the accident, his wife went through the windshield and lost their unborn child. She’s currently serving a two-year prison sentence for reckless child endangerment. She gets out in October.

Tim, the name he gave me, said Fr. B. bought him a car for $5,000. He was looking for Fr. B. because he needed $30 to replace his flat tire. Father manages his checking account (Tim receives $637 a month in disability). He seemed desperate and in a hurry. When I asked if I could do anything to help, he gladly took the $22 I offered that I had in my purse. He said that Father doesn’t like for him to ask parishioners for help (apparently he has done this before), but what else could he do when Father isn’t available?

What else could I do? Sitting before the exposed body of Christ, I didn’t hesitate to offer him help. The Bible says “Whatsoever you do for the least of my brothers.” Or maybe that’s the song lyric based on the Bible passage. Still, I couldn’t help but wonder if I had been played.

Then I thought about security. Can anyone walk in here and ask for money? There’s a keypad lock on the outside door, but it’s rarely locked when I enter. Should it be locked more often to keep those of us praying inside safe from those who need prayers (and other things)? If one is looking for a handout, isn't a church a great place to solicit?

It felt good to help Tim, but had I done the right thing? At first glance the situation sounds so simple. He needed money and I had it to give. But did I really help by giving him money? Is it better to give money to organizations that help the poor and hope that the right people get the money? Does it matter if he didn’t really need the money for a tire, or does it only matter that I offered help? Why are the simple things so complicated?

When Tim left he asked me to pray for him. I took that as a good sign.

If Only We Could Forget to Remember

One of the most perplexing aspects of dementia is the forgetfulness. I am a planner—I can come up with a plan or a system for just about anything. Written to-do lists and reminders have been very helpful for Mom. I use them as well to keep track of a busy family. As long as I can anticipate what it is that Mom won’t remember, I can create a reminder to deal with it. The problem is that I don’t always know what she will forget.

Simple things can drive me crazy. For her recent trip at Christmas, I loaned her a large rolling suitcase. She kept insisting that she had a big suitcase and did not need mine. “This one has wheels Mom. You don’t want to drag that other suitcase through the airport.”

“That’s a good idea,” she said. A few minutes later she would start again, “I have a suitcase, I don’t need this one.” When I showed up early to take her to the airport (somehow I knew that I should), she had all her things packed in her small carry-on bag. The Christmas presents were the only items in the big case. I quickly packed the large bag for her explaining that she would only want one piece of luggage. Then I feared that she wouldn’t recognize the bag when it started circling in the baggage claim area. Another call to my brother with a description of the bag was in order. But what else would she forget?

There are times when I feel like I am trapped within my own little world. My family consumes most of my time, but for the most part, I enjoy that. My life is good. Still, the world is larger than the immediate needs of my little family and I need to be aware of that. Along those lines I baked muffins for a friend yesterday. While I don’t see Greg that often any more, he and his family live in our neighborhood. He and I worked on a few committees together when our children were in grade school.

I had heard that Greg had cancer surgery and was waiting to hear the results of the tests that measured whether the cancer had spread. In the meantime, a troubled employee had entered Greg’s place of work and gone on a shooting spree. By the time he was finished, four people, including the gunman, were dead.

When I rang their doorbell, Greg and his wife had just returned from the final funeral. Greg is a high ranking executive at the company. Until recently Greg’s wife was also an employee there, so they both knew all of the victims quite well. Greg reported that he had good news about his test results—the cancer had not spread. But that news seemed so insignificant compared to the shooting.

Greg chatted briefly but had to go handle a disaster recovery call as the plant was going to reopen the next day. His wife talked extensively about the funerals, the families, the unexpected nature of it all. She talked about how every one of the victims had both parents at their funerals. The question on everyone’s mind was, “How do people return to work?” Their workplace will never be the same.

As I left I was struck by how little I had managed to say to them. I couldn't begin to comprehend their pain. The visit made me thankful that my biggest challenge was a loving, although forgetful parent. Forgetfulness seemed like a gift—one that I wished I could share and dispense as needed.

Rough Patch

Mom’s trip to Washington DC was uneventful. She enjoyed the trip although she couldn’t name all of the grandchildren that she saw (there were six of them—three belonged to my brother with whom she was staying and three came up to visit one day from a few hours away. When questioned she wasn’t sure how many had made the trip to see her.

The other noteworthy incident took place the evening of her arrival. Her plane arrived a little past 9:30 at night. My brother, John, picked her up and they were back at his house having a bite (Mom hadn’t eaten since lunch) when she asked how she got there. When John said she arrived by plane, Mom insisted she didn’t have a suitcase. Of course, she did, and John told her so. I imagine that John must have wondered what he was in for after that exchange.

The day Mom returned home I started her on the memory patch. The technical name for the medication is Exelon. It is supposed to be like Aricept minus the nauseating side effects. We tried the patch before Christmas but either Mom caught a little flu bug or the patch nauseated her, so, after consulting the doctor, I decided to postpone the new regimen until after her trip.

Deciding on the patch was not an easy decision. If the medication works you aren’t supposed to notice anything. It does not improve memory, it’s just supposed to keep things status quo or slow the progression. It also costs around $200 a month. Mom has some money, but she’s far from wealthy. She’s spending down her reserves to live in her retirement apartment. She has enough money for several years, but should she need a higher level of care, her money will go fast. After weighing the options I decided I needed to try it.

In the meantime I applied for Medicare prescription drug coverage to help with some of the cost. I just received a letter that Mom will owe a penalty since she did not sign up for prescription drug coverage as soon as she was eligible. The logic of that penalty escapes me. She has paid for all of her medications out of her pocket for the past several years. Now that she is going to pay for the insurance, the government wants to penalize her for not having the insurance in the past. I don’t get it.

The patch is another story. This medication that is supposed to help people who are having memory issues (it’s prescribed for Alzheimer’s patients and those with dementia) needs to be applied to a different spot on the body each day. The same spot cannot be used for fourteen days. I suppose I should be grateful that this medicine exists, but I can’t help but wonder what kind of twisted mind thought up the application plan. Mom isn't capable of keeping track of fourteen different locations on her body and which one was used when. To help her out I created a calendar that would tell her exactly where to put the patch each day. The first week or so I went to her apartment and helped her with the application. Then I started calling her every morning to walk her through the process. While the plan is not executing flawlessly, it seems to be working well enough.

Or is it? I took her grocery shopping this afternoon. She could not decide which package of toilet paper to buy, so I suggested that if she could wait a few days, I would buy a jumbo pack from Costco and give her one of the individual packages. She agreed. We went through the last three aisles in the store. One our way to the check-out line we passed the paper products again. “Oh, I forgot to get toilet paper,” she said as she grabbed a package of Charmin.

A Trip for Mom

Two days before Christmas I put my mother on a plane to visit my brother in Washington, D.C. As I did so I couldn’t help but wonder if it would be the last time that she would be able to fly alone. Mom suffers from dementia. She is still highly functioning, but there is no way to know how long she will stay that way. I have already taken her checkbook and pay all her bills. I count out her medications and call her twice a day to remind her to take them. Even so, sometimes she doesn’t take them all or takes too many.

My brother hadn’t seen Mom in about 18 months. I wondered if he would notice a difference in her capabilities. She is very cooperative and pleasant to be around. Still, it was nice to not have to worry about her for a few days. Putting her on the plane was stressful enough. I obtained an escort pass so I could take her through security and get her to the gate. I made sure that she knew not to exit the plane at the stop in Chicago but to wait until she arrived at Washington Dulles. I instructed my brother to meet her at the gate so she wouldn’t have to navigate the shuttle to the baggage claim.

While she was gone I read a book about a woman who was diagnosed with early onset
Alzheimer’s disease. At first I thought that perhaps Mom had this dreaded disease instead of the awful but less traumatic dementia. After finishing the book I no longer think that’s true, but I was amazed at how many of the symptoms are the same. Mom’s diagnosis was not derived after much testing. The doctor essentially said that we could put her through a series of neurological tests, but the treatment would be the same. The CT scan he ordered showed atrophy in her brain that was much more pronounced than it should have been for a seventy-year-old, her age at the time. That result and her behavior formed the basis for her diagnosis.

Even though Mom was not with me over the holiday, she was not far from my mind. I can’t help but wonder what the next year will bring. She just spent her first year in her independent retirement community. How long will her place serve her needs? Where will she spend next Christmas? How much of my future will depend on her abilities? Will I notice when the subtle changes occur? How can I know if I am doing what’s best for her instead of what’s easiest for me?

Another Try

My dedication to writing has gotten off to a very slow start. I’ve been waiting for the time when there isn’t so much work to do. I’ve been waiting for a break in the schedule, waiting for life to slow down.

Finally I have realized that the perfect time will never present itself. I will have to make writing a part of my life. My life will not open up a space where time for writing can easily slide in like a break in the clouds on a rainy day.

One of my many excuses for not finding time to write has been the increasing demands on my time of my mother. Mom suffers from dementia. One year ago I moved her from her home to a retirement apartment three miles from my house. It was a good move for her and for me. She loves her new place and I love the convenience of having her seven minutes away.

The first six months of the past year were spent fixing up my mother’s house and selling it in the worst economic downturn in my lifetime. The last six months were spent adding things to her apartment, getting her settled and adjusted to a new place, and oh yeah, dealing with my family.
In the past year, my oldest son spent one semester of his college career in Egypt and my youngest son to China for two weeks. My daughter and I spent a few days in Georgia in the summer and a few days in New York City in the fall. In the past month the dog has had surgery, my adult-aged son had his tonsils removed, my husband has made two business trips out of town, and my youngest son was rear-ended while driving my car.

While it should have been obvious to me, I’ve had an epiphany that life will not stop for the things that I want to do. I will have to carve out the time. So much life is coming at me, that I am missing great opportunities to document it. I’ve been somewhat stuck on how to write my “book”. I think I need to let the writing take over. I need to record my thoughts and observations and a form will emerge. That’s what all the writing books say anyway. While I haven’t written much in the past year, I have managed to read a lot about writing.
I expect that a lot of my topics will focus on caring for a parent with dementia. I’m sure that some of those posts will be painful to write. I also expect that there will be moments of joy. Moments of family life will be sprinkled throughout. While I think my children are too old for me to qualify as part of the sandwich generation, my family still requires a great deal of my time and attention.

God willing, it will be an eventful year for our family. My oldest son will graduate from college in May. My daughter will graduate from college in December. My youngest will finish his junior year of high school and begin his senior year. Another college search is on our horizon! In the midst of all that activity I will be dealing with Mom.

Looking ahead exhausts me. I’m excited about what lies ahead, but it’s a lot to process at once. Like the cliché (or maybe the television show from the 70’s) I’ve decided to take life one day at a time. Is there really any other way? I suppose it really isn’t a choice, is it? Perhaps I can choose to write every day instead or at least with some degree of regularity.