The Dementia Maze or What fresh hell will tomorrow bring? Managing memory loss, dementia, Alzheimers in loved ones.

With trepidation, I walk into the childhood home I love; the home Mom has occupied since I was four... The living room where she and Daddy waltzed; the kitchen where they kissed in front of the fridge. The bedrooms where we hid in stunned silence, trying to compose ourselves for Daddy's funeral. The porch where we discussed her impending marriage to Ray. The mantles and couches and corners where eight grandchildren gathered Easter eggs hidden by giggling bunnies. I know this house like my aging skin.

I enter and there's Mom, lying on the couch. My beloved Mom; my always there for me Mom whose constant refrain when we siblings made fun of some poor bloke was, "Maybe s/he needs a friend." My Mom who talks to the waiter and the clerk, the bus driver and the minister. Whose sewed garments competed with the best Dayton's Oval Room had to offer. Whose lovely alto voice brightened the church choir for 53+ years. The rock of my life. I catch my breath.

She looks up. Instantly, her face transforms, as lit with inner joy. "Barb!" She reaches toward me, presents her cheek for a kiss. Her embrace calms my trembling shoulders. "What a surprise!" But it isn't a surprise. I told her twice on the phone that I would be visiting her on this night. That I would stay with her for three nights. That we would be together for two entire days. I told her all of this. "I didn't know you were coming! Did you drive?"

It didn't matter that she wasn't expecting me. It didn't matter that I had described several times over the phone the cheap fare I had found, allowing me to attend the day's Dementia conference with Ray and my brother. Mom remembered me.

I stored my dread and settled into this moment, this visit, our special time together.

Dementia is an umbrella category for changes in the brain structure that cause memory loss. Receiving a diagnosis of dementia, individuals discover they have memory issues, in the same way someone diagnosed with cancer understands they have out of control cell growth.

Cancer as a descriptor is further diagnosed as breast cancer, prostate cancer, etc. Dementia as a descriptor is further diagnosed into Alzheimer's Disease, Frontotemporal Dementia, Vascular Dementia, Parkinson's Spectrum Disorders and Lewy Body Dementias, and Rapidly Progressive Dementia.

Alzheimers is the most common dementia diagnosis, which is why so many of us think when someone has dementia, they also have Alzheimers. During the conference, one sweet older woman complained that Alzheimers might have been given a name easier to spell! However, this "peculiar disease of the cerebral cortex" was first defined by Alois Alzheimer- it wasn't a name assigned to confuse already challenged patients! (Mom doesn't have Alzheimers.)

New Guidelines to Diagnose Alzheimer's Disease were published on April 19, 2011, generating hope that new understanding may someday generate a vaccine to halt the advances of this debilitating disease. For Mom and others like her, defining what caused her memory loss comes too late. She is living the effects of these brain changes already.

Yet this information may halt the advancement of her disease. As my stepdad says, "If we can keep her at the level she is right now, she will not require nursing care. I would like to keep her at home for the duration of her life."

Bless this lovely man, managing her care is no easy task. Dementia folk like Mom need external motivation to do just about everything, from taking vitamins to showering and washing her hair to getting off the couch and attending outside activities. Caretakers require an inordinate amount of patience; there is no escape.

Dr. David Tullar, PA-C, MPAC, a brillaint neurologist funny enough to do standup (according to my brother) suggests that managing care for memory loss patients requires caretakers to first have an accurate diagnosis and understand what this diagnosis means. Is it normal aging that is causing Mom to enter a room and forget why she went there? Or is it Vascular Dementia, caused by mini-TIAs? Might her memory loss be tied to her refusal to connect to a sleep apnea machine at night that is causing her to be constantly tired and confused? Knowing the diagnosis helps figure out what she needs in the way of support.

Once the diagnosis is clear, Tullar recommends connecting with others who are experiencing similar challenges. One such group is the Alzheimer's Association. Even if the diagnosis is not Alzheimers, this association has compiled a great deal of helpful information- and offers wonderful support for all causes of memory loss. Along with ALZ, find local support groups through senior care centers, some of which offer Adult Day Care opportunities as well as support groups for caregivers. The Pastor for Older Adults at my Mom's church gave me the number of a local care center that provides this service for congregants of the Lutheran variety.

If you are anything like me, you want to know as much about the condition of your loved one as possible. There is a tool to assess their functional status called the Occupational Therapy Cognitive Function Evaluation that helps caregivers and families figure out exactly what their loved one can and cannot figure out. And it is important for the doctor to review all mediations including over the counter and vitamins so that extraneous or repetitive pills aren't consumed.

I had the sad task of taking my mom to Motor Vehicle while home. I did not renew her license but got her an official Identification card instead. "But I drive sometimes," Mom snapped, put out. "What would you do if you forgot where you were going in the middle of Hanley Road, Mom?" "Well, I wouldn't get lost going to the grocery store!" But she got a funny look on her face, realizing she might. Had I opted for the Driver's License, Mom would have been subject to a driving evaluation that would have humiliated her. I felt bad, consoling myself by remembering to focus on what she could do, not what she could not. Obviously, I wanted to keep her- and others on the road- safe.

Last summer I was fortunate to attend a doctor's appointment with Mom. During this appointment, her caring physician Dr. Bass asked Mom all sorts of questions that I could help sort through. Questions that even Ray couldn't answer objectively, like "do you think you are depressed?" I thought she was and after a few more questions, the doctor agreed. Putting her on a mild dose of antidepressant helped her wake with much more energy- I guess even depression has a brain component. These meds help Mom's brain fire up connections that otherwise lay dormant.

Communicating with the doctor in an organized fashion, arriving with questions and a willingness to listen helps move forward the objective of caretaking for a loved one. Communicating with family members is equally important.

Dr. Tullar suggests it is in the best interest of all involved to assign one family member as Primary Care Partner and to identify Back-up Partners. These folk have as their family contribution the task of keeping abreast of the dementia person's condition and issues. To help these caregivers, the rest of the family must accept that conflict among those who love a dementia person happens- who knows what is triggered when a sibling takes away Mom's driver's license? Or puts Dad on a depression med? Or signs up Uncle Ted for an OT Cognitive Function Evaluation? Or helps Grandma plan her future funeral?

Family members can help move the process forward by practicing Active Listening and by using I statements, i.e., "I remember Mom teaching me to drive. I feel so sad to learn you took away her driving priviledges!", rather than, "You had no right to decide this without me!"

Scheduling family meetings or conference calls can help everyone be on the same page. (Or writing hubs like this one, sharing what I learned at the dementia conference so that other family members might benefit.) Come up with an agenda determined by questions or concerns coming from siblings, spouses, etc. Stick to the agenda and stick with the present. Don't allow past issues to sidetrack the conversation. We all have stuff we need to process. This meeting is about providing the best care for Mom or Dad or Grandpa or... It might be helpful during such a meeting to review the goals each member wishes to achieve, with an eye toward those that allow Mom to be happy, safe and pain-free. Give everyone a chance to share; listen carefully. This is a difficult time for everyone involved.

There are benefits to communicating with a loved one who has dementia, when one considers the bright side. Mom expressed righteous anger while we were at the Department of Motor Vehicle, because she did not want to to give up the idea of driving. But soon, she forgot all about it and was happy to have me drive her home. She reacted to the temporary realization that she was officially losing her independence, but she doesn't drive anymore anyway.

Mom also gave me flack because I did not want her to wear the same pair of pants day after day. She refused to change out of her good black pair, despite my logical arguments. She wore them to a nice dinner out and then put them on the next morning for exercise club. "Mom, those pants are too nice for Club! Why not put on a pair of sweats? You have several nice choices in the closet!" She shrugged me off. "I like wearing these. They are comfortable."

Dr. Tullar says you can never win an argument with a dementia patient, because "people with memory loss are more sure that they are right than we are sure they are wrong." Even if we win the argument, he says, "there is a strong likelihood that your loved one will forget the reasoning and revert back to their initial way of thinking." After all, "Memory loss limits access to recent information and enhances the validity of old information."

In the case of the pants, I remembered his advice and let it go. But before Mom got dressed the next morning, I made sure the pants were in the clothes chute. They were beginning to stink!

It feels so strange to have Mom not care about scent anymore, considering she used to embarass us all by sniffing out all sorts of odors. Sadly, with dementia, one of the senses to disappear first is the sense of smell. Now I go into her closet and smell her clothing to determine what I need to wash.

It is true that these loved ones are mirrors of our own anxiety, love and care. In order to caretake my mother and not my own needs, I must constantly consider the following:

1. Why am I arguing this point? Is it a matter of safety? Or does my mother wearing a fancy pair of pants that potentially smell have more to do with my public sensibilities? Is making her feel bad worth all of this anxiety?

2. Can I win this argument? Is it possible for me to live with her decision in the moment?

3. Is it possible to redirect her toward something positive? At Club, she said she could only make it around the track twice. She was convinced of it. By distracting her, pointing out some small child in the other part of the room, she walked around the track five times with no argument. A small thing, but she moved her body for a longer period of time, which made me happy despite the elegant slacks she would not change!

Saying goodbye to Mom rips my heart out each and every visit. But this one was significantly more challenging. Since my last visit, Mom has been going to an Adult Day Care program at Colonial Care Center. I helped research and set this up and spoke with the Administrator Gloria about Mom and her needs. I felt excited to see Mom in this group, as Gloria said she was high functioning compared to the rest of the group, and was a leader. It felt good to know that Mom could be in this setting and not feel she had to perform or that she was failing to perform socially.

The minute we walked into the Adult Day Care room, it hit me; Mom was finding such success within the walls of a nursing home, with its accompanying urine smells, elderly guests staring vacantly out picture windows and institutional wallpaper. I kept smiling for Mom, until a man entered the room with his wife, who was walking like a slug- arms hanging, feet plodding. She plopped into a chair, while her husband engaged Ray in conversation. She was a pretty woman with stylishly short, white hair. But her face held no expression what so ever.

Mom asked her a question and she hesitated before telling Mom where she had been raised. Her husband prepared to leave and said good bye to her, at which time this sweet woman burst into tears. Observing all this, I became emotional. My mother did not belong in a nursing home. Not the dear woman who had made all my clothes throughout my childhood. Who had comforted me when Scott Housenga called me "carrot top!" Who had helped me through three child births and one near divorce.

A second Group Leader, wishing to make me feel welcome by acting interested, asked me some mundane question like, "Are you headed to the airport directly from here? Where's home?"

I could only point at the seated woman and sputter, "I am with her." Tears welled in my eyes and my throat closed. When I planned this departure from my mother, I had not thought how I would feel. I had only thought Mom would have something to distract her from my leaving. And she did. She had taken charge and was directing the interaction at the table by asking each person questions, smiling and nodding.

Gloria the Administrator rescued me with a hug. I cried a little bit. It was so spontaneous; I could not control it. She told me how wonderful it was to have Mom. That when Mom came to Colonial Club, the entire day was brighter, because Mom was so happy and positive all the time. At first, she confessed, she had been surprised at how high functioning Mom was- even wondering why she was there. "It took awhile for me to realize the depth of her dementia," Gloria said. "Your mother is so social, she masks it well."

We drove away. The old dread roared out of the closet like a skull and crossbones. And I was faced with that ever present fear, "Will she know me next visit?"