The Forgetting

The Forgetting, A Portrait of Alzheimer’s

Airs Sunday, August 3, 2008 at 9 pm ET on most PBS stations. Check local listings.

This info was sent to me. I'm posting it here in the event someone hasn't heard about it. It originally aired on PBS in January, 2004. It is a 90-minute documentary based on the book of the same title, and it will be followed by a 30-minute program about the future of Alzheimer's.

The CT Results

Diane, one of the five daughters, recalls accompanying Mom and Pop to the doctor’s visit in which the doctor explained the results of Mom’s CT scan. This appointment took place in January, 2008:

With a lump in my throat and my heart feeling as if it were going to explode, I watched and tried to listen. The doctor used the tip of her ink pen to point out each area of Mom’s brain where miniature strokes had occurred over time. I fought back tears with all my might. I could not bear to look at my sweet mother sitting next to me without the slightest idea of what we were talking about…or did she have an inkling?

As the doctor finished, I took a deep breath and used all of my strength to turn toward Mom, making sure to hide what was exploding inside of me. There have been very few times in my life that I had to listen to something that hurt this bad and not cry. “Knowing” that Mom is sick is one thing, but “seeing” the actual damage on the brain scan was painful beyond words.

Pop was quiet. I’m not sure how well he could hear and not sure what kind of emotions he might be fighting. Mom was angry and ready to leave. They returned home, and I went back to my job. Getting my mind back on my work would help me get through the rest of the day until I could get home and fall apart.

That was my plan, but I forgot one major thing. Or should I say FOUR major things— my sisters—each one of them anxiously awaiting my report. One by one, we cried together over the phone, as they seemed to live through the experience of the previous hour along with me. I would now no longer need to go home and fall apart. Together, our prayers will get us through this. I am so thankful for my god-given support group!

The Key is Patience

One of our nephews had a car accident in October. Because his vehicle was totaled (he was all right), his mother asked if she could borrow Pop’s pickup for a while. She intended to drive the borrowed vehicle and allow her son to drive hers until they could find a pickup to purchase for him. After a week or two, Pop decided he needed his vehicle back, but he would loan Mother’s car. Well, Mom exploded. She needed to have her car in the garage so if something came up, it would be there. It seemed that perhaps she was suspicious of everyone’s motives at that point. She may have been sensing that we were “ganging up on her.”

The sister had her picture made standing in front of Mom’s car and sent it to Mom with a thank-you note for letting her borrow her car. Sis hoped this would be a visual reminder of where the car was and that it was safe. Mom wadded up the picture and the piece of paper and discarded them both. She continued to get upset any time she passed through the empty garage until the vehicle was eventually returned.

Once Mom’s car was back in its proper place, we again were concerned that she might try to drive herself somewhere. One of our brothers-in-law demonstrated how simple it is to disable the kind of car she has. You just open the trunk and look at the left tire well for a red button. Pushing that button disables the car, and a slight pound on the side of the tire well allows it to run again. Pop said, “No,” and that was the end of that little effort.

Whether your car has that little button is uncertain, but I feel sure there is something similar for all cars. Checking the index of the little book in your glove compartment is probably the easiest way to start looking. Of course, simple as it may be, it won’t work if you get told “no,” as we did.

A neighbor suggested another fairly simple solution. He told us he had his wife’s car painted a different color. Then she no longer paid it any attention. Since she did not recognize it as her car, she did not insist on driving it. And, no, we did not even mention that suggestion to Pop!

For a few months Pop or one of the sisters made it a point to drive Mom to the beauty shop every Saturday and to the grocery store when she wanted to go. Then one day last spring she got in the car and drove off. She did not go far, just around the block and back home. Pop was in the back yard and did not know when she left. She told him she couldn’t find her way so she came back. I am so thankful she was able to get right back home without making a wrong turn! That was when Pop finally took the car key off her ring! Gradually as weeks passed, Mom stopped mentioning the car. She can see it in the garage, but she has not said anything else about driving.

No driving, are you kidding?

The “no driving” edict was one of the most difficult to implement. At first, it seemed it might be impossible to enforce.

I first approached Pop early last summer with the idea that he hide Mom’s keys. He told me that she was still a good driver and it would crush her not to be able to drive anymore. He said she only goes to the grocery store and the hairdresser. Well, both of these places are located in the neighborhood, but you have to cross a busy four-lane street to get to the grocery store. Pop did not appear to be worried, so I went home that day trying to put away my worries.

Later in the summer we went to our first appointment with Dr. Tee, during which she gave us the official diagnosis and the instructions for Mom. Upon receiving her opinion that Mom should not drive, we sisters redoubled our efforts to persuade Pop to take Mom’s keys. Nothing we said had any affect, and she continued to drive her car. More than once she used her “emergency” cell phone to call someone to come lead her home.

But Pop seemed to be living in denial. (And how difficult it would be to admit the truth at this point! They had enjoyed quite a few years together, and he surely did not want to think of finishing his life’s journey caring for his sweetheart who no longer knew who he was.) And Mom continued to drive.

Word moved through our little family grapevine one Saturday morning that Mom drove herself to the hairdresser. Immediately one of the sisters who lives close drove to the shopping center and sat in her car in the parking lot until Mom came out. She later reported that Mom drove home safely, after following a very slow and circuitous route, and was unaware of her being in the car behind her.

One day Pop went to the local hospital (several miles from their home) for a procedure which, as it turned out, required him to stay overnight. Mom went with him. When she realized later that night that he had to stay, she decided to drive home. She was unable to find her way out of the hospital so she called one of her daughters. As she wandered, a nurse approached her, took her phone, and spoke emphatically to the sister, “You need to come get her. She does not know where she is!”

Soon after that evening, one of the sisters took Mom’s car key off the ring of keys in her purse and took it home with her. When Pop discovered this, he was irate! He threatened everyone in the family to get the key back. I told him I didn’t have the key, but I would get it back to him. No one had any idea he would react so violently, but maybe he took it as an affront to his judgment. We don’t know. At any rate, I got the key back and took it to him without saying where I found it. Next followed some anxious weeks of wondering whether he would let Mom drive again.

Not to be Home Alone

One thing Pop is in great need of is the opportunity to get out of the house. He has always been very active, working in the yard and having a garden among other things, since he retired from his career work. Traveling has also always been important to him.

Now, if he goes outside to work in his shop, Mom loses track of him. If he wants to go to a particular store, such as Home Depot or the grocery store, Mom must go with him; however, she does not always want to go. She may even refuse. One time he took her with him, and she would not get out of the car once they got to the parking lot. So he left her in the car alone. Fortunately, Mom did not go in search of him, wander off, or have a heat stroke!

One thing the doctor recommended was “brain therapy,” also referred to as “adult daycare.” Centers which offer this service for an hourly fee, half-day, or whole-day rates, provide excellent care for an individual suffering from some type of dementia. Various activities are structured throughout the day, and lunch is provided. These places provide mental and social stimulation for the client, while allowing the caregiver time during which he/she can be free to run errands, socialize, rest, or do whatever is needed.

Mom went to one brain therapy session with one of my sisters last fall. They enjoyed a lovely lunch with those in attendance; and then Mom, with purse on arm, stated that she was ready to go home. She did not belong there with all those “old folks.” Pop made one more effort to go there one day, but Mom recognized the place as they approached it and refused to go in. End of that part of the story….

The Dr.'s Directives

No driving. No staying home alone. Wear a “safe return” bracelet. Go for brain therapy two or three times a week. Have some home health kind of help two or three times a week (did I forget to mention that one earlier?). Take the medication consistently. Change the powers of attorney. There it is—in a nutshell! It took up five lines of typing.

However, as I write this, in two more days it will be a year since we first received those instructions. Pop has taken Mom to an appointment with Dr. Tee several times during the year, and each time the doctor has questioned the two of them, plus whichever sister went with them, concerning the implementation of her suggestions. After each visit she has reiterated the importance of following this plan.

The first thing to “not work” was the bracelet. I ordered it soon after the first request, received it in the mail, and took it to Mom. I was told later that when I left Mom asked Pop to remove it because it was too tight and very uncomfortable. So he did. As far as I know, she has never worn it.

Fortunately, she has only wandered up the street once that we know of, and she came back home fairly quickly. But the accommodating of her (in order to keep her calm and happy) is part of what has been so frustrating. On the other hand, if I were there 24/7, I might also choose to accommodate, rather than endure her wrath when she becomes so upset. For the record, they are about the same age, so he, of course, has several of his own issues with which to deal.

Monday's Thoughts

I am not writing in order to assign blame to anyone for anything, but I do hope to accomplish at least two things by publishing my thoughts (worldwide?!).

First, perhaps those of us directly involved can reason together more easily, simply by having looked at the situation in print.

Second, I hope others will benefit from our experiences and perhaps even do better than we have. We are definitely learning as we go. As we become wrapped up in our problems, it is easy to get to the point where we think we are the only ones who have ever gone through something like this. Yet we know what the Bible tells us:

Beloved, think it not strange concerning the fiery trial which is to try you, as though some strange thing happened unto you….1 Peter 4:12.

This horrible disease has not just happened to our mother and our family, but it is ravaging homes and lives everywhere we look. The best thing we can do is to pray, for our loved ones, as well as research foundations, government grantors, corporate sponsors, whomever we can think of who might contribute something.

My Expectations

What did I expect after our visit to the specialist? After avoiding the issue for so long, up to the point that things were really getting serious, I had hopes that the doctor’s diagnosis, along with her explicit instructions, would help bring order back into our lives where Mom was concerned. We had been especially worried about her driving, her safety, and the safety of others.

Now we had medication and several directives. Mom was no longer to drive a vehicle. She was not to be left alone (24/7). We were to get her an ID bracelet with a “Safe Return” number on it. Also, the doctor wanted her to attend brain therapy sessions (adult daycare) three times a week. This was not only for her benefit, but Pop’s as well, to give him some free time to himself.

Mom has always had great respect for medical doctors, but she has never been the kind of person to go to one for every tiny sniffle. She has had the attitude of “mind over matter,” if you don’t mind, it don’t matter; and usually she just wears out whatever ailment she has. She has been in the hospital five times to give birth to her children, and she underwent one surgery. That’s just about the extent of her medical history until recently.

Pop, on the other hand, believes in using every available bit of modern medical knowledge to take care of himself. He does not believe in waiting around and taking a chance that some condition will worsen. He goes faithfully for check-ups, and he takes excellent care of himself.

Knowing how they both feel about the medical community, I can only say I am surprised at the way Dr. Tee’s directives have not been followed. But I think I’ll stop for now. God bless everyone who’s reading!

No Relief--Just Frustration

Somehow I thought finally getting Mom to an Alzheimer’s specialist and having a professional diagnosis would be a huge relief. We had fretted and sidestepped issues for years, with Denial as our method of handling of choice. As distant as ten years ago, Pop remembered Mom scheduling an appointment and then recording the date incorrectly. They drove fifty-five miles to see a doctor on the wrong day.

Through the years we gently jested about Mom’s memory. She actually laughed, too, making reference to some things she just could not seem to remember any more. She attributed it to age—like everybody else’s memory when they get old.

There were quite a few years that no one could tell anything was wrong, outside our immediate family. She was always very outgoing and always enjoyed being the life of the party. She was able to continue socializing without letting anyone know of her memory loss, mostly, I think, by keeping the conversation on a rather superficial level.

When things started to be more noticeable, the two quit going out with friends so much. One excuse was that it was so hard to hear in restaurants. They still went to church, but they would leave as soon as it was over, not stopping to visit with anyone. I suppose they felt no one would notice anything different. Though they never discussed it, we were aware that no one was supposed to know.

There is a stigma attached to Alzheimer’s disease that is more prevalent in their generation than in mine. Only in recent years has the disease begun to be understood and knowledge of it disseminated, via the internet mostly. So people in their eighties, who do not usually become as familiar with computers as the rest of the world, do not have an updated picture of the disease. They still think people will think they are crazy or unable to function normally.

One article I read, dated March 21, 2006*, reported on 539 caregivers of either a parent or a spouse. Among the findings was that the caregivers’ concern about Alzheimer’s stigma delayed diagnosis by up to six years! This in itself is an unnerving fact. Six years’ delay in treatment is especially significant, since most of the medications right now are designed to maintain the status quo.

In our society, with its increasing emphasis on youth, self-control, and productivity, it is sad to think how our older citizens must feel as they become less productive and less in control of their own lives. Down deep there is a fear that people will treat them differently, “if they know.” And this fear is based on their perception of the disease, which means it is the truth for them.

* “Stigma May Slow Alzheimer’s Diagnosis,” http://www.medscape.com/ .

The Trip Home

Mother rode in the front seat with me on the trip home. Pop sat in back staring out the window in silence. When I directed a comment or question to him, he could not hear me and would lean up for me to repeat more loudly. Apparently Mother was not going to talk to him. After a while, I started asking her to repeat my question to him. She did and seemed to be fairly relaxed by the time we arrived home. Then I "messed up."

I called one of my sisters to let her know we were home. Mother became upset because I "told her." She said she told me before we left the office just to keep all of this to myself. I assured her that I did not understand that that was her wish. Then I asked, "Did you really intend for Pop and me just to keep today to ourselves and not tell even my sisters?" And she replied, "Yes, because now the whole world will know!" I don't really know who she is worried about knowing anything. I reminded her that most of our old friends are no longer around, so who's to know? She couldn't really answer me.

I talked to another sister on the phone, and she assured me that she was bringing beef tips and rice for dinner after work. So, after a few more minutes of going over the doctor's notes and instructions, I left. On the drive home, I called Pop's daughter, our "Oregon sister." As I related highlights of the visit, she assured me that the doctor sounded professional, efficient, correct, and so on. I felt better after having run everything by our R.N. Sister, even though I was so tired by then I could hardly talk or listen. I may have had an angel helping me drive. But I now thoroughly understood why they titled that book The 36-Hour Day!

The Restaurant

In "real time" today is my birthday. At this point in my life, I am just thankful for another one! But thinking back, I remember how Mom always made all of our birthdays special. Not that she went "all out" by renting a place for dinner or decorating her house with balloons. That was not her style. But she would cook our favorite foods, have a present ready, and have all the sisters and brothers-in-law around. One of my favorite meals she prepared for me was: red beans (pinto beans to some), soft-fried potatoes, fried okra, boiled squash, and sliced tomatoes. Before the day was over, at some point Mom would say something like, "Do you know where I was thirty years ago today?" or "I remember what I was doing fifty years ago today!" Now I find myself doing the same thing with my two sons on their birthday. Wow, I remember where I was thirty-two years ago today! And so we hand our memories down....

Back to the appointment now: Pop had an appointment a couple of blocks away from where we had been with Mom, so Mom and I took him there when we finished at Dr. Tee's office. Then she and I went to a nearby restaurant for salad and iced tea. The place was almost empty, and the waitress seated us in a lovely garden spot partially sunlit, with some shade from the nearby plants. She was precious! As she gave us our menus, she asked, "Are you ladies sisters?" I smiled and said "No, but thank you." Mom seemed pleased. Later as I told Pop what the young lady said, Mom asked if I had been embarrassed. I told her no, that I took it as a compliment. Again, she seemed pleased. But in between seeming pleased once or twice, she continued to erupt in tears of anger. I use the word anger because when I suggested that I understood she might be fearful, she quickly informed me that she was not fearful. She was mad!

Mom continued to bring up the fact that her memory was just as good or better than Pop's. And doesn't everyone get forgetful sometimes? Following the doctor's lead, I answered her each time with, "Yes, but the doctor said you have a significant memory loss. She also said it's hard when a person has a memory problem for that person to understand the severity of it because he or she does not remember things well." I am not sure I quoted Dr. Tee verbatim, but Mom was not too interested in the doctor's opinion anyway!