Tuesday, February 26, 2013

Somebody That I Used to Know

I was just looking through some old photos of my mom with my sister and me when we were growing up. A notion struck me again that has come to me from time to time. The notion that sometimes I forget how wonderful she was because I get caught up in the way she is now. I know the old saying that we should live in the now, and I mostly agree with that statement. Don't worry about lost loves, old fights, the coulda, shoulda, woulda’s of life. But going through those old pictures helped me remember how I once saw her as a beautiful, kind, and powerful woman. And maybe it is a reminder that none of that really has changed.

This was not about wishing she was “that” person still, although I certainly have those days. Today it was about not thinking of my mom as days and moments filled with confusion, not remembering my name, not remembering her past, paperwork that has to be filled out on her behalf, or trying to translate whatever she is saying. Today was about the woman she was, that she still is, fresh again for the moment in my mind and heart.

She is the beautiful lady with the sweet voice. The mom who always had a hug or loving touch for me. The woman who cared so deeply for others. The intelligent woman who worked at a university, one of the best in the nation. The friend who laughed with me. The cultural attache who helped me to enjoy art and music and to see things in my own light. The mom who rarely, if ever, raised her voice, yet I knew when she meant business. The mom who read to me and rocked me and sang songs to me. That is the mom that I wanted to experience today.

As I scrolled through the pictures, something else struck me. In every candid photo with me, she was touching me. I realized that it had always been this way as I grew from a child to a woman. She held me in her arms on the first day we met, minutes after I was born. She helped me to not to fall off playground toys. She put an arm around me as she read to me. She tickled me and made me laugh. She fixed my skinned knees, which I had a lot of as a kid. When I fell she picked me up, both physically and emotionally. She was always there.

She touched me and kept me close when I needed it, but she also let me be me. I don't ever remember feeling that she was judgmental with me, although I am sure she was at times. I probably have blocked that out so that I can remember the times with her that I loved so much, and that is okay, especially now that she is different. I do remember her being frustrated with me, and she once told me that she had asked her own mother what to do about me. I had a lot of energy and when I cried, I cried big, but when I laughed, it was even bigger. I was very insistent about things. My grandmother told her that I was simply passionate. Passionate about my feelings, passionate about life and how I saw it and wanted it to be. I knew what I wanted and when I wanted it and that was just how I was.

I often think of that advice when I am frustrated with my own daughter. I am still a passionate person, and my daughter is even more so. My grandmother’s advice and my mother’s willingness to follow that advice and to allow me to be myself helped me to become a powerful woman. I will do the same for my daughter. We are powerful because we know what we like and it is not always what others like. We are strong enough to be comfortable with our likes and opinions and feelings. We are independent thinkers. Although I may not always express my views, I have them. My daughter, on the other hand, tells it as it is. She lets others know how she feels and what she likes. My girl and I believe that we can do just about anything on our own. If we aren't sure how, we figure it out or research it, or we ask for help, or we just make it up as we go, but we do it.

Like my mom. She drove cross country in her VW Karman Ghia in the early 60's. At that time this was unheard of for a young woman in her 20's to do. She was told over and over again, “You can't do that!” She didn't listen. She knew what she wanted to do and did it. My mom is smart, but she didn't always feel like it. She struggled in school, just as I did. We learn differently. We aren't conventional learners. We have to make many accommodations to do things. Simple instructions sometimes get boggled in our minds and we have to repeat them out loud to make sure we understand. We have to incorporate many of our senses in order to truly learn something.

My mom was able to graduate college, get her Masters in Education from the University of Virginia, and get her license in counseling, all despite her learning difficulties. It took a lot of work and a lot of help from those willing to get her there, but she made it. She was a teacher for 12 years, a mom, a volunteer. She headed breast cancer support groups. She ran a workshop for women trying to get back into the workforce after being at home for years. She helped them find out who they were and what they wanted to do, what they were passionate about. She worked in the Pain Management Center at the University of Virginia. She did counseling, biofeedback, and relaxation for those suffering from chronic pain. She volunteered and then worked at hospices. She never stopped learning. She read many books a month, she traveled, she took art classes, did yoga, and met with friends in many different types of group activities.

She was always a kind soul. She gave off a sense of peace and zen. My friends said they loved coming to our house because it was always so peaceful as compared to theirs. She opened up her doors and her dinner table to whomever needed it. There were many Thanksgivings and Christmases when we had friends or acquaintances at the table - the kids who couldn't afford to fly home at breaks in college, the Japanese students who had never experienced Thanksgiving in America, the friend whose family couldn't afford and didn't celebrate these holidays. They all were welcome at our table.

Her memories of those days are mostly gone. There are no more words of wisdom from her mother to be passed along to me. No more job at a prestigious university. No more stories of her experiences to provide some insight to her own daughter. No more drives listening to classical music piped in from NPR. Those memories have not been forgotten by me. Today I was able to remember the woman that she once was and really still is. She is still beautiful. She is still a caring soul. She still teaches me lessons, albeit in a different way. Today didn't take me to a place of wishing, wanting that woman that once was. Instead I reveled in her knowledge, her power, and her peace.

I found the following passage, written in my mom's handwriting, that I keep close to heart.

May your soul be at rest.
May your heart remain open.
May you realize your own true nature.
May you be healed.
May you be a source of healing for the world.
May your heart remain open.
~Zen Prayer

This truly fits my mom to a “t.” She has lived this prayer and has passed it along to me. May we each find comfort when we need it, just as I did today, reminiscing about the amazing woman that I call Mom.

Friday, February 15, 2013

The Simple Things

Today was a great day, not just a good day, but a great day with my mom. There were no spectacular activities that we attended. It was just a day full of life's simple moments - a song remembered, a good meal, hearing a sweet voice, belly laughs, and great company.

It was Valentine's Day, and my mom had an appointment to go to the dentist. I arrived at the locked down unit and pulled her away from watching “The Price is Right.” I delivered her cards, flowers, and treats from the family. She was happy, but didn't understand why she was getting these things. Holidays mean nothing to her these days. She doesn't understand the concept. To her a holiday is just another day.

We bundled up and headed to the car. I helped her in and buckled her seat belt. Again, these simple tasks that we don't give another thought to are trials for her. With an Alzheimer's patient you learn patience, lots of patience. You can never be in a hurry because everything takes longer. You have to help with everything. A simple task like getting into the car turns into figuring out where they place their foot, what they can grab onto, and simply how to get in the vehicle and sit. You must buckle their seat belt because the concept of safety and even the fact that there is a seatbelt is lost. This time mom thought that it was really “fancy” when I buckled her in. She was a queen in her carriage.
As we were driving to the dentist, I had intentionally put in some music that I thought she might enjoy or recognize. This time I chose Lionel Ritchie's Tuskegee album. In between her incessant talking, she was hearing the songs. It wasn't long before she started singing along. No matter what my mom forgets, somehow music has always been something that has stayed with her. As she started to sing along with me, I gradually stopped singing and just listened. Holding back tears as I drove and just listened to her sweet voice singing along to “Deep River Woman.” At one point I said, “Mom, I love hearing you sing.” She responded, “Really? I didn't even realize that I was singing.” Well, I sure did and I loved it.

The dentist went well. You never know how things like this are going to go. She could be calm and cooperative or she could be scared and rebellious. You simply have to go with the flow and have no expectations. Lucky for us, this time it was event free. At first she didn’t understand basic requests such as, “You can close your mouth and swallow now.” After awhile she understood and obliged.

After the dentist, she was hungry, and I had to think where to get her some food. I try not to go to big restaurants anymore. There is a lot of stimulation that can be overwhelming for her. Also, my mom is “young” to be in such a severe stage of Alzheimer's. At 72, she is 20 years younger than most of the other residents that she shares the locked down unit with. This makes it harder for people in public to understand that she has Alzheimer's, even when I tell them. They often comment that they would have never known just looking at her - whatever that means. How is an Alzheimer's patient supposed to look?

On the drive, I called my sister, Morgan. I knew that in the past it had been hard for my mom to talk on the phone, and now this is a foreign concept to her. I thought that I would at least try. Morgan lives far away and doesn't get to see or talk to our mom very often anymore. I knew this might be the perfect day to try it out. I put my mom on the phone and said, “Say hi, Mom.” She responded right into the phone, “Hi Mom!” Morgan is her daughter, not her mother, but that didn't matter. Morgan got to hear her sweet voice. She got to hear our mom tell her that she loves her. That is priceless.

As we continued to drive, I decided to take her to Chik-Fil-A. The last time I got her some chicken from there she loved it, so I thought it might be a safe bet. We headed there and sat down to eat. She was so impressed by her $4.00 worth of chicken. She loved it and kept commenting, “This is the best food I have had in a long time!” In between pointing and talking about the “people” (hallucinations of people) that she was seeing, she ate every bit of her food and we were ready to head home.

When we got back to the nursing home, I decided to sit with her. She still had a cookie that she wanted to eat, and the other residents were at lunch. We sat down and were talking. Then another lady at our table, Sue*, was really mad. She was talking to “someone” and she blurted out, “You think that's scary, you ought to meet my Momma!” For some reason, this tickled our funny bones, and mom and I were laughing. This made Sue start laughing too. She continued to talk to us, like we had been part of her conversation, continuing to make us laugh. Mom and I were laughing so hard we were crying. All of the residents were turning around looking at us. I don't think anyone had laughed like that in there in a very long time. I know I hadn't and neither had mom.

After we wiped away the tears of joy, we settled down and mom finished her cookie and coffee. I had to leave. She walked me to the door, and we exchanged hugs. She told me how strong I was as I touched her soft cheek and gave her a kiss. Our day had ended, but my love had only grown stronger. Today I got a glimpse of the woman I once knew. The woman who is still there, buried deep within confusion and that disease-ridden brain. And it made me realize again that really the simple things in life are what matter.

*Not her real name.

Thursday, February 14, 2013

Love Lessons

An intense feeling of deep affection: "their love for their country".
Feel a deep romantic or sexual attachment to (someone): "do you love me?".
noun.  affection - fondness - darling – passion verb.  like - be fond of - fancy - adore


A quick Google search gives me the above definition of love. Seems simple, right? We can love just about anything or anyone. We “love” chocolate. We “love” our teams. We “love” our families. We are “in love” with our husband/wife/partner. There are many levels to that love, as well. I know that I certainly love my husband exponentially more than I love gummy bears. Now, as a caregiver, I believe I have found another level of love, one that perhaps only another caregiver can understand. Since I have become a caregiver, my love for my mom has reached an entirely different level.

Growing up I always loved my mom. What that meant depended on the very minute. You know what I mean. I had a great relationship with my mom and I ALWAYS loved her- even when she insisted that I clean my room or do my homework before I went to someone's house. As we both grew older, the nature of our love changed. She became even more of a friend to me. She lived nearby, and we saw each other quite often. We would go shopping, she would help watch the kids, and she would listen when I needed her to listen.  She was my beloved mother.  She was my gentle, kind, loving, empathetic friend.

As the years passed and she developed dementia, and then Alzheimer's, our relationship deepened even more. She had to admit her defeats and ask for help. I became her assistant of sorts. I had to drive her around, do her bills, help with shopping. Yet with every new duty I took on, I also had to understand that my mom was losing one more aspect of her independence. This was heart wrenching on both sides. I remember the day that she told me that she was going to need help with her bills. I can still feel the sadness and sense of defeat that she felt. How brave she was to openly admit that she needed me more than she wanted to admit. It was just one more link in the chain, the chain that she was dragging around, that chain called Alzheimer's.

The chain's weight grew and continues to grow heavier, sometimes slowly and sometimes very quickly. As that chain grows heavier, so do my caretaker burdens. By burdens I really mean responsibilities. I will never, and I mean never, define my mother as a burden. Trust me, there have been times when I wanted to throw my hands up and say, “Forget it! This is too much for me to bear!” But I couldn't. My heart would never let me. Truthfully, I rarely think of labeling myself as a caretaker, even though that is what I have become. She is my mom and I am her daughter, no matter the role reversal.

When people hear my story about my mother - how I take care of her, the deep pain and sadness that I have to endure every single day, they almost always say, “I can't imagine that. I am not sure that I could do what you are doing for your mom.” My immediate thought in my head is, “Are you serious? How could you not?”, because in my heart it was never a consideration whether I would help my mom. It just was. I knew no other way. My heart, my mind, my soul knew no other way. For I love my mom no matter what. I loved her when she sang to me as a child. I loved her when she made me clean my room. I loved her when we made gingerbread cookies at Christmas. I loved her when she needed me to drive her to the store. I loved her as things didn't make sense to her and she would cry to me. And I love her now, even when she doesn't know who I am.

My love for my mom is truly unconditional. All the hurt, the pain, the continual grieving that I  endure on a daily basis can never take the place of my love for her. Even in these past years when it has been me, the daughter, helping her, the mother, she continually teaches me lessons - lessons of patience, kindness, and understanding.  And she has most certainly taught me a huge lesson in love.

*As originally seen in the February Alzheimer's Association of Greater Indiana ENews

Wednesday, February 6, 2013

Sound Bite

Lately I have felt as if someone stole my mojo. I am tired. I am run down. It is hard for me to get a good workout in because all I really want to do is nap. Doing everyday tasks that involve errands and cleaning the house seem almost impossible. I have learned that I have to watch myself, for it is at these times that, if I ignore these signs and push too much, I get sick.

Today was a day where getting out of bed was a struggle. I wanted to ignore my responsibilities and snuggle down in my bed for another hour. Instead, I got up and fed the kids, got them ready for school and shuffled them out the door. Then I went to work out, but lifting insane amounts of weight wasn't happening today. I did work out, but I had to be ok with a mediocre lift and a slow workout with lighter weight than usual. This is the opposite of what CrossFit is all about- breaking through those whiny days and just doing it. Pushing hard, breaking down walls, challenging your mental state of mind. Yet today, I had to listen to me, not what I believed was “expected.” Mojo never showed up during that lift or the workout. It was still missing.

Then off to run an errand and then to visit my mom. Everything is “ho hum,” and I am locked away in a sort of haze as a drive to my mom's. After I park my car, I see an email from a friend telling me that they saw my newest installment on the Enews for the Alzheimer's Association of Greater Indiana. A quick proud moment and, boom, it's gone. I had not even read it since it had been published in the Enews, which is strange for me. I go in to visit my mom and the Director of the Memory Ward where my mom lives commented on it and said he forwarded it on to staff and all the families who have loved ones living there. Barely a tick on the pride meter.

I have a visit with my mom. I find her talking to “The Lady in the Mirror,” and she says to her own reflection, “That young woman? She is my daughter. Isn't she nice?” I say hello to her “friend” and we go and sit and have lunch together. My mom is not in a good mood today. She is irritable. I have to help the nurses out by getting her to take her meds that she refused to take earlier. Then we sit and she talks incessantly about how sad she is. She cries. I comfort her. She says she misses having friends. As she points around the room and tells me that these “people,” who are merely hallucinations, are nice and all, but they don't have anything in common, I comfort her some more. This isn't helping my lack of mojo. In fact, I think someone stole hers today as well. There’s no point in giving you details of the conversation. You only need to know that I seemed to join my mom in her sad, confused haze. A lot of what she said didn’t make sense to me, but there were enough pieces of today's puzzle in place that I could figure out the meaning behind it.

Yes, she hasn't had true friends for many, many years. She seemed to realize this today. My mom explained in her broken way of conversation that she misses talking and just “being” with people who are like her. People who are interested in the same things that she is, who eat the type of foods that she does. She misses true companionship. I am not even sure what my mom would consider her interests to be today. They used to be reading, art, gardening, counseling, and being a mom. Now...I don't know. Again, it was a sad scene. Yet, there was a bright light at the end of this weary tunnel of a day.

Today my mom said my name. Sounds so simple and it is. I have not heard my mom say “Molly” in probably over a year. I have been a label - my daughter, hon, you, her, my mother, this lady.... but not Molly. This is what made my day more joyful than the fact that something I wrote was being sent to thousands to read. Just hearing my mom say my name again was pure happiness. I want to take that sound bite and lock it away, put it on repeat, and listen to it over and over.

Sometimes the things that matter are not the “things” that we often believe matter most. Today it wasn't the awesome breakfast I ate or the workout I did. It wasn't my own excitement and pride in a personal accomplishment. It was simply hearing my mom say my name. That is what moved me to my core. I can see it in my mind and hear it as it rings through my heart and into my soul. The sweet sound of my name being spoken by my mother. I didn't realize how much it mattered, how much I missed it.