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.

Not My Time to Write

Last night was supposed to be my night. Nothing much was going on. My husband would be watching Monday Night Football and Kevin would be locked in his room doing homework. My plan was to retire upstairs to work on that novel/short story that's banging around in my head trying to get out. Instead I did homework.

My older son, Paul, called home from college. "Mom, I need to interview you for my paper. It's due tomorrow."

"Ok, but I have a commitment at church from 6 to 7. Then I'll have to walk the dog. You'll have to catch me after that," I said.

He didn't have much time either. He had a meeting at 5:30 and then he had a radio show to host from 9:30 to 11. We agreed that he would email his questions. The assignment was to interview a micro entrepreneur. Despite having not heard the term before, I fit the description.

Answering his questions about how I got started and why made me realize that I have had a good run. Last night I wrote, but I didn't work on that novel. The main reason I started my own business twenty years ago was to have more time for my kids. I'm still making time for them. After answering his questions I could not pull myself away from his internet radio show. Between songs that I've never heard before, he banters with his co-host. My husband and I were glued to our computer screen waiting for the next sound of his voice.

Finally the show was over. No more writing for me--I went to bed. My son was the one who did the writing that night. Probably an all-nighter.

The Difference Between Boys and Girls

My daughter Claire is sharing an apartment with three other girls this semester. Last night they shared a rare night together at home. To celebrate they worked out together to some goofy dance aerobic tape (her words).

My son Paul is sharing an apartment with two other guys. His school is probably ten hours away from Claire's. This morning Claire saw her brother's roommate on her campus. Matt is in town for a medical school interview. Claire calls Paul to inform him that she has seen Matt from a distance. Paul's response, "Yeah. I knew he was going out of town. I didn't know it was this weekend."

Still Getting Started

I may have been premature in starting a blog. Keeping a blog forces a writer to create something that is "blog worthy" on a regular basis. I haven't posted in over a week because I am focusing in other areas. I am exploring writing a book. I thought I might use the blog to showcase what I've written, but I don't think that's the best approach. Instead, I need to get as much of my story down on paper (or the electronic equivalent) without being concerned about people reading it.
I'm not going to abandon the blog. I will use it to record thoughts on the writing process--kind of a journal for a beginning writer.

I picked up a few books from the library in an attempt to find some kind of inspiration. I stumbled upon Stephen King's On Writing. While I am not a fan of Stephen King, I found this book very helpful. A lot of his advice is common sense or lessons I had already learned. Still, it was helpful to hear it again. I agree with one of King's main assertions. If you want to write you need to read. A lot. You will learn from good writing and from the bad. It is true that he focuses on fiction writing, but his advice applies to all types of writers. Part of the book is autobiographical. I found that part particularly entertaining.

Now it's time for me to follow his advice and start writing.