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Independence. What a complex word! It signifies so much that even our great country celebrates a holiday called Independence Day.

Our children become a bit more independent today than they were the day before. Most of us seek solitude or activities that scream of independence. We love being able to do what we want, where we want, when we want! And then, piece by piece our independence is taken from us. Maybe it's a controlling spouse, or a boss who micro-manages, or a disease that chips away at us. Or, maybe it's this dreaded mind game called Alzheimer's.

Eight weeks ago Mother's doctors told her that for every one's safety she should give up her driver's license. The doctors had a strong sense that it was no longer safe for Joan to drive. We went one step further and attended OSU Rehabilitation services driving center to see if she had the faculty to drive her car. After a couple hours of testing, the therapist found that Mother did not have enough memory of street signs, other street icons or the ability to react quickly in case of a sudden turn of road events.

That day began her grieving period. She loved her car and was very proud of her ability to drive almost accident free since she got her license in 1954. Only one speeding ticket and a questionable accident that ended as a no-fault claim. What she loved even more than her care is her love of being independent and being able to drive whenever and where ever she wants to. Now she needs to rely on someone else to transport her.

There's only one good thing I can say about this, and that is that Joan's car found a buyer who will take car of her precious possession. Yesterday we delivered "it" to its new home. As Mother passed by and looked into her car and lovingly petted it one more time, she began to cry. I suppose partly because she was giving up her beautiful blue baby ION, but more than likely because this non-forgiving disease was once again chipping away at the independence she has so jealously guarded throughout her life.

I'll Have the Chicken Please

At a recent church dinner Mother was standing in the buffet line waiting her turn. The ministers who were serving the meal asked each person in line if they would like the white meat or the dark meat of the turkey they had prepared.

When it came time for my mother to answer the question, she pointed at the dark meat and said, "I don't like turkey, I've never liked turkey - then pointed to the white meat and said, "I'll have some of this chicken". The ministers could hardly contain their laughter, and dutifully placed the white meat on her plate. She raved throughout the dinner how moist and tasty the chicken was.

I've written this short event here so I'll remember this sweet story, and because I'm sure there will be days in the future that will be dark and overwhelming. For now, I smile and revel in the light, and hold the words of this story in my heart for future smiles!

Cookies

During a recent consult with Joan's doctor, the doctor asked me if Mother was doing anything unusual like buying ice cream every day or organizing her closet by favorite outfits or scrubbing a surface over and over again. I smiled when her doctor mentioned ice cream because recently she was purchasing at least 1/2 gallon of her favorite Butter Pecan ice cream every few days.

Now it's December and of course Christmas cookies are showing up everywhere, but not as prevalent as they were last night following our church's Christmas program. Larry and I barely sat down when I noticed that my mother was lingering over the cookie table. I decided that she probably needed help and I headed her way to assist. To my amazement, she had an eight inch paper plate filled to capacity with sugar cookies, iced cut-outs, truffles, brownies, and caramels.

I helped her back to her seat and asked her what she was going to do with all of those cookies. Proudly she said, I'm taking them home, they're all so pretty! Mother has always been into bling. If it's pretty and colorful, shinny or sparkly, she loves it, and most of the time wants to personally own whatever it is.

Being the person I am to always be thinking ten steps into the future, I jokingly mentioned to my husband that I might need to be sure when we are shopping that she doesn't toss something sparkly into her purse and walk out the store without paying. My smile quickly turned into a frown as I remembered reading newspaper articles about such things,"80 Year Old Woman Walks Out of Store Without Paying for $10,000 Braclet. "Oh my!

I don't know what our future may hold, but tonight I smile and remember the tower of cookies that Mother so neatly staked four inches high on her eight inch Christmas plate. It made her happy last evening, and that's really all that matters right now, isn't it?

Scrabble or Scramble?

Thanksgiving was a great day for Mother. She was in as chipper a mood as she had been for several weeks - really since her Alzheimer's diagnosis. I'm becoming hopeful that her newly added meds are helping to remove a few cobwebs from her thinking process.

Larry decided we should keep the day simple with minimal outside stimulation - staying at home and serving that ever traditional Thanksgiving dinner - lasagna! The day went well, we popped the lasagna into the oven, prepared the salad and rolls, set the table and had a delightful dinner. There was even laughter and playful teasing at the table. Yes, my husband's suggestion to "keep it simple" was paying big dividends.

After the dishes were cleared, we broke out the Scrabble board. My mother has always been a gifted competitor when it comes to words. Tonight proved to be no different except that her courage to form larger words seemed to be waning. Still quick to the board, she questioned her moves as soon as she made them. I praised her when she formed a word and encouraged her when she questioned herself. Tonight those tactics were working, so much so, that we played three games!

Fast forward two days later. While writing a check, Mother became confused at how to spell the word "hundred", and later in the day she spelled the word guide, "gyge". When changing channel on her TV she had forgotten that in order to get to channels below 10, she would need to insert a zero in front of the number so that the TV remove would recognize the channel. Her reply was I've never had to do that before, her mood frustrated. Everything seemed scrambled to her today.

I tend to be analytical...I ask a lot of questions...I want to know why. My own fears begin to emerge. Will I suffer this same malady? What will life be like for me twenty years from now?

I push the pause button on my thoughts and my whys. All of my fearful emotions and questions will need to wait for another day, because today is all we are guaranteed. It is our gift from God - a clean slate for writing the history of our own lives. When I look at life that way, I'm less anxious and more gentle. I'm not so hard on myself and others. It feels right.

Speaking of the word scrambled, I think I'll fix some toast and scrambled eggs for breakfast on this rainy November day. It's a good place to start my day - taking care of the caregiver and to rewind.

Shopping!

Yesterday I took Mother to the beauty shop - again, at every turn I was criticized for my driving. "Why are you so far behind the car in front of you? Why do you have your lights on? Why are you driving so slow." I politely placed my hand on her leg to reassure her that I was doing all of these things to get us there safely. Obviously, her only priority was to get to the beauty shop on time! Thus, the strong suggestion by her Dr. at the Gerlach Center that she hand in her car keys (more about this later I'm sure when it's time to sell her car).

After dropping her off at the beauty shop, I scurried to my new respite, Einstein Bagels where I ordered a cinnamon bear claw and a cup of English tea (with cream of course!) Forty-five minutes of pure relaxation, reading and sipping tea. I'm learning that I must take a few moments here and there for me. The caregiver must find the things that please her and indulge before the madness begins once again.

After a call from Mother that she was ready to be picked up, we headed down the road to run a few errands. First JoAnn Fabrics where I picked up some needles for a home project. There Joan ran into an old friend and chatted the time away while I went for the car. Next stop Aldi's to buy a few essentials. With today's tight budgets, it's the food store of my choice. Then onto the Pepperidge Farm outlet for some tasty bread items.

Mother loves to shop and I knew that if we didn't hit at least one retail store, she would think she hadn't been out. Located right down the way from the bread store was an American Cancer Society Discovery store. If you've never been there, I strongly suggest it for a good thrift store shopping experience. The store is clean and well organized. The quality of merchandise is grand, and I found a cream and sugar for my 85 year old Noritake china set! Another one of those respite moments!

Weary from the day's activities we meandered home and unloaded the car. It's then one of those precious moments happened. "I really had a good time today," she sheepishly said. "I'm glad", was my reply. I didn't get a thing done in the house. I didn't turn any more pages in the book I was reading, but what I gained was a glimpse of serving without anger, a day that was pleasant and sweet - a day for the memory book.

That Darn Pink Pill

The old 45 and 73 rpm vinyl records would ocassionally get stuck and play the same line of music over and over again until someone moved the needle (for those of you 35 or younger you may have no clue as to what I'm referring to, but thank God you have Google and you can google it!)Well, it seems as though those with Alzheimer's also get stuck playing the same broken record, over and over until someone distracts them.

Recently the doctor added the little pink pill call Namenda to Mother's pill box. For years Mother has not known the name of the medicines she takes, but merely the color of the medicine. "I take a blue one, a tiny yellow one, a medium yellow and a big red one." Believe me, it causes great frustration for all of us when the drug manufacturer changes the size, shape and color of one of Mother's pills.

Adding Namenda to her pill box is no different. I added the pill a few days ago. Each day before she takes her meds she comes to find me and asks, should I also take this pink pill? Yes, is my answer and off she goes to take the pink pill. On her way back upstairs to take her pill, she is distracted and I once again hear her coming back down the stairs to confirm that she should take the pink pill. "This pink pill has not been here before - only the blue one, the tiny yellow one, the medium yellow and the big red one. I never took this pink one before. Are you sure I should take it?" "Yes, mother, it is okay to take it."

It won't be long before I have to take over the pill box. She relishes in being able to fill it with precision - most weeks it's 100% perfect. I don't know if I dread the fact that I'll be taking over one more task or that she will have one more thing stripped from her basket of independence. We'll see how long this lasts, because I know it won't be long before the drug manufactgurers change her big red pill to Zebra stripes!

Target

Ever feel like you have a target on you? A laser beam of intense heat searing right into the center of your being? It's how I felt last evening. After spending a full day at a work seminar on accountability (theme: you own it whether it succeeds or fails), fighting traffic to get home and then spending a stressful hour at hospice saying precious goodbye to a dear friend, I took my mother shopping.

What you may need to understand is that even before my mother was diagnosed with Alzheimer's, her world was all about her. She would wake up most days with a laundry list full of places, tasks and things that all revolved around her. Seldom did she think of how she might interface or serve someone or something outside of her narcissistic world.

Tonight was no different. It was all about her, and the fact that she had no makeup. When I asked specifically what she needed, she replied that she needed everything. What does "everything" mean, I asked. She simply raised the tone of her voice and shouted EVERYTHING!

So, off to shop we went - our destination Target. But, before we could even leave the house, she was back upstairs to her apartment to brush her teeth, then on the road we had to stop at the bank. Once back in the car she thought she had lost a glove, which turned into a temper tantrum of pulling things out of her purse and throwing them to the floor. The drive from our house to Target is only six miles. Tonight it felt like one thousand.

Arriving at Target and trying to be the good daughter, I circled around the parking lot as to drop her off in front of the door. This evening I could do nothing right - shouts of "Why are you going this way!" left me deaf in my right ear. Finally arriving a short distance from Target's entrance, she jumped out of the car and slammed the passenger door - just like a spoiled twelve year old. I took a deep breath and found a place to park in the lot.

Before going into the store, I chatted a few minutes with a dear friend. Linda always calms me and listens to my tales. It is here that I suggest that you find a few girlfriends to chat with at such times. They will save your sanity.

Before my guilt set in, I went into the store to be sure that Mother was safe. She was happily shopping, sniffing and sizing up all the products in the makeup aisles. I decided since she was doing so well, I'd check my favorite aisles - papers and scrap booking. After several minutes of my own scratch and sniff, I headed to the front of the store only to be bombarded once again with an angry response. "Where have you been! I've been waiting at least ten minutes!" Under my breath I breathed the words, "Guess it's your turn to wait."

Waking up this morning, I didn't think I would spend the evening as I did - both of us with targets on our backs - Mother reeling with the deadly shrapnel of Alzheimer's and me suffering from the searing effects of a very targeted laser beam.

Beauty is Only Skin Deep

On the outside, all looks fine...smiling, lovely ladies. But, deep inside the mind of one of the ladies lurks a mind fighting Alzheimer's disease. I hate that physically healthy, good looking ladies like these have to struggle with something so beyond their control...especially when one of them is my mother.

One minute clear, next minute angry, another minute clueless. One thing is for sure, I'm learning a lot about flexibility and nimbleness. My reactions aren't so judgemental, but more calm. My moods aren't so much dictated by an other's mood. I'm learning to take one day at a time.

Sure, I need to be thinking about Plan B and what I will do when, and if. Sure, there are lots of papers that need to be put in order, and lawyers to be contacted, and people lined up for home care. But, today, I need to look at this picture and dwell on the outside of these good looking ladies. Occasionally, I need to rest from thinking about Plan B.

Besides, today is Sunday, and God commanded that we use it for a day of rest!

No Soup for You!

Remember Jerry Seinfeld's hilarious episode "The Soup Nazi"? One of the quotes from this episode goes as follows, "The guy who runs the place is a little temperamental, especially about the ordering procedure. He's secretly referred to as the Soup Nazi." "Why? What happens if you don't order right?" "He yells and you don't get your soup." - Jerry and Elaine, in "The Soup Nazi"

So much for my theory of sunny days and my mother's sweet temperament. This disorder or disease known as Alzheimer's has no rhyme or reason. The day was just as gorgeous as the day before, but my mother's mood was not.

It's been a week now since her driver's license was taken away from her, and she's feeling the pull of her independence waining. She's cooped up and she doesn't like it. Even Larry's sweet gesture of grocery shopping for my mother did not brighten her spirit.

A call to me at work assured me that all was not well with her world. Larry had stopped by the house to pick up her grocery list, but it was no longer in the place where I had put it that morning. A quick call to my mother was met with fiery words and disgust. "Where is your grocery list Mother?" "I took it back, I didn't think he (Larry) was going to the store for me. He's been gone all morning. I haven't seen him." "Mother," I said,he's going now, could you bring your list back down stairs?" With a huff and an angry gait, she returned the grocery list to it's earlier resting place, totally ignoring Larry's presence. (more about this relationship in a future post or two.)

Larry shopped for everything on her list, including the canned soups she enjoys almost daily. To save her 50 cents a can, he bought the store brand. Well, you would have thought he committed an atrocity!

Later that evening, she made her final appearance for the day. Not to thank Larry for doing her shopping, not to come down to socialize, but to share with Larry that her soup was horrible and that it was the worst tasting stuff she's ever eaten! Well, it seems as though we have a Soup Nazi living in our house right now, because if your don't order right, she yells...

"Why? What happens if you don't order right?" "He yells and you don't get your soup." - Jerry and Elaine, in "The Soup Nazi"

Hello Mother

When I arrived home from my day at work and my personal counseling session, I found Mother chipper and fully aware.

For most of my life, I've known how much she loves the sunshine. She's actually been called the "sun goddess" throughout her life as she spent many a summer's day basking in its warmth. She's always loved watching the sun catch the vast crystal collection she has in her place - red, yellow and green shadows, brightly reflecting on the egg-shell walls on the opposite sides of her room - her own special gift from God.

Today was no different. The light and warmth of the autumn day cheered her. She and the dog had gone outside for a stroll - my mother picking up random leaves from the porch and our white boxer, Pearl faithful by her side.

I took time to sit with her tonight knowing that our conversation would not be salt and peppered with tantrums and accusations - I'm slowly learning to enjoy these moments for they are now few and far between. As we ate our sandwiches, she recalled the day with pleasure and she ate her sandwich with the same resolve.

What will tomorrow bring? Not really sure, and for most of us, it's a waste of energy to speculate. For tomorrow will bring what it will bring, but today Mother handed me a grocery list!

Where Do I Begin?

These last 72 hours have been bitter-sweet.

My mother was diagnosed with full-blown dementia with Alzheimer's tendencies,and, we celebrated our 40th wedding anniversary. And, oh, did I mention, that my mother has been diagnosed with Alzheimer's? Up and down like the thrill of the beastliest roller-coaster, our emotions have weathered all of the curves, bumps, startling turns, as well as metal scrapping metal and bodies bouncing and screaming with delight and dismay all woven together without anyone being able to discern their intersections.

I love to write - I'm most likely not a prize-winning writer, but a writer all the same. Writing is something I enjoy; something that takes the edge off for me and allows me to express my feelings. As Larry and I celebrated our anniversary this weekend, we talked about ways I might emotionally travel through these next unknown days, months, or possibly even years. I would write. It would be cathartic for me and it might be helpful to someone else who finds themselves going through such a journey.

I've titled my blog, "Web of Darkness". When you think about a spider-web you think about the light that flows between the lines of the web. There is both darkness and light. That's where my mother is right now, somewhere between darkness and light. There are days of clarity and days of confusion, but never in the same quantity. The person I live with changes each day and more recently each hour.

Rule #1 of Alzheimer's: Don't argue - agree. Friday, Joan's driving privileges were taken from her. Sunday, she's expected to give family members a grocery list. This fiercely independent woman is expected to give up the keys to her independence with one hand and give a grocery list to someone with the other. As you might suspect, she did not come up with more than milk and bread. When asked for more items, she became confused, stood up and said, "you think I don't can do anything." "Please sit down while we make out a list that I can take to the grocery," I calmly pleaded." At that, she kept going up the stairs to her residence, all the while murmuring, "I'll just starve then. Nobody thinks I can do anything for myself."

At that, what could I do? One more hour of the journey had begun, the journey between dark and light; the journey between sanity and insanity; the journey between feeling guilty and not guilty. A journey I prayed I was equipped to travel; a journey I didn't ask for.