Two Step: My Favorite Dance

Every time we're in the car, I put in a CD of Hochunk music. My personal favorites are Bearheart Singers, my tega (uncle) Ken Funmaker and family. Although he and his son Nelson have passed, their dedication to preserving our beloved Hochunk drum songs will live on in the cds and tapes that they produced. When mom listens to this music, she sings along and pats her hand on her leg in time with the music. It's great to see her so animated. Often times I wish I wasn't driving because I'd like to jot down what she says, those great memories that comes to her when hearing this music. She'll share something with me about the song -- why it was composed, the last time she danced to the song, and where she heard it last. I like to remember the last time that I'd dance alongside my mom at pow wows or the Stand Rock Indian Ceremonial. The two step has always my favorite, and back in the day, my mom was quite the dancer, too! We've also been watching the VHS and DVD format movies that the Hocak Wazija Haci (our tribe's language program) has distributed to tribal members. The videos that are produced, most specifically stories told in Hochunk (with English sub captions) are her favorite. She actively listens; I can tell because of her body language and the fact that she waves me off when I ask her a question during each film. I've learned to use the pause button, get her attention, and then ask a question. Otherwise she's so in to the story that my side conversation is too much of a distraction and she gets frustrated when she can't concentrate. It's something to witness, because this doesn't happen when she's watching regular TV or a movie in English. Both TV and movies are just background noise, she doesn't really follow the storyline or plot -- but the sound of the TV must be calming to her because she always wants it turned on.

Since my last posting I've been successful at getting Nani into the tub. It was a challenge, and I was not going to give in to her stubbornness. I do my little "happy dance" every time we finish our bath time, and she always comments, over and over again how good the scrubbing and warm water feels on her back and how good it feels when she gets her lotion rub-down afterward.

This weekend marks Mom's third month away from Wisconsin. She still regularly asks for my older sister, Roxi and I have to share that Roxi doesn't live with us in Arizona. Then she asks about what the other Hochunk elders are doing, and I have to share that I'm not sure. I've recently received information about the elder programs at the Arizona Intertribal Council office, so I'm hoping that I can get mom involved with other wak sik xate (Native elders) in the near future. In retrospect, I wish that we had more family members that live closer to us. It means to much to mom to have family around and converse with others in Hochunk. Even though she often says that she's so thankful to us and for the care that we're giving to her her in Arizona, she's looking forward to returning to her homeland in June.

One of the Four Agreements: Don't Take Things Personally

For many, many years, my mom was a Sunday school teacher at the Presbyterian church in my hometown. Her bible traveled in the backseat of her car and this well-worn book now resides on the antique table in the living room of her home in Wisconsin. Mom has also always been active in the Medicine Lodge, the traditional religion of the Hochunk people. I share this because the dogma of the two belief systems have been a constant in my life because of my parent's beliefs. When I was two I was baptized in the Presbyterian Church in the morning, and then I received my Hochunk name from my uncle Howard Windblow in the lodge in the afternoon.  I never really saw a difference between the two when it came down to their core teachings. Whether we were sitting in the pews of the church as dad sang in the choir and mom's circle group would prepare the coffee and cookies for the post-service fellowship, or we kids were sitting on the ground, peering under the canvas flaps, tightly bonded to the bent tamarack poles that maintained the secure foundation of the medicine lodge. The smells, the murmuring of the speakers and the prayers, and the acknowledgment that we all belonged to both were symbols of my connection to God or Ma oo nah (Earth Maker).

My favorite Bible verse also comes to mind:
Love is patient and kind. Love is not jealous or boastful; it is not arrogant or rude.
Love does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrong, but rejoices in the right.
Love bears all things, believes all things, hopes all things, endures all things. Love never ends.
1 Cor. 4-8

These thoughts fill my mind and my heart this evening as I need these memories to help me to process through the emotions of this day. Beginning last month Mom has developed a serious dry, itchy skin condition on various parts of her body. Her scalp, left ear, right hand, lower back, and inside of her legs are constantly bothering her, resulting in intense scratching to the point of bleeding, and regular requests for lotion and a back rub. Upon consultation with her doctor, we've adjusted a diaretic medication prescribed to help with her swollen ankles, and the doctor has recommended at least two baths a week, followed by a liberal dousing with a recommended skin lotion. The doctor has also recommended that she drink less coffee and encourage more liquids, especially water. Well all I can say is "easier said than done." I can also say that tonight was painful and that this twice a week bath thing is going to be a struggle. And not a physical struggle mind you, but an emotional struggle if tonight's incident is an example of what's to come. After mother's dinner, I set up the bath area as I usually do, with her fuzzy pink bathrobe, towels, and fresh undergarments, and her bed area with fresh sheets, lotion and gloves. I was ready in my mind, prepared to convince her that bath time would be quick, enjoyable, and helpful as we work together to ease her discomfort and her itching.

Well, I was able to get her to the bathroom, but what transpired in the bathroom, will stay in the bathroom -- I won't go into full detail. But I will share that in spite of my pleading for her to take a bath (I was speaking in English), she pretty much told me off first in Hochunk, and when I asked her to please speak in English because I couldn't understand everything that she was saying, she apologized for bringing me into the world because I was a failure as a Hochunk woman and as her daughter because I don't speak Hochunk and I don't know the Hochunk ways. Wow, I never thought I'd hear those words come out of my mother's mouth. I now know that I hate dementia, as this chronic illness robs it's victim of those valuable filters and this illness isn't going to play fair. I also know that I would never make a good counselor because I don't have the thick skin necessary to be objective when hurtful comments are cast my way. And lastly, I know that I need to become fluent in my native language if I'm going to be a good care provider for my mom.

No one ever told me that this was going to be easy. If anyone would have told me that caring for my 86 year old mother was going to be a joyous and fulfilling period in my life, I would have told them that they were probably lying or crazy. I've known for the past 3 years that this was going to be trying at times, as my older sister had been mom's care provider up until mom's move down here to Arizona. My sister did the best that she could, but she often expressed that burn out and frustration were always lurking behind the corner -- just waiting to throw a rock and show their ugly faces. Tonight I felt the first pebble's sting.

As I look up from my work table and read The Four Agreements by Don Miguel Ruiz posted on my dream board, I need to remember and reflect upon the following:
1) Be impeccable with my words
2) Don't take things personally
3) Don't make assumptions
4) Always do my best

Due to her dementia, mom won't remember today. I kinda wish I could forget, too.

Seeking Balance

For the past four years I have relished the life of an "empty-nester." Although I miss my husband, who's work hours are the total flip-side of mine, I still had the ability to come and go as I please and enjoy the solitude that artists seek from time to time. Quiet time is a need, not a want. My career border-lined with exciting in-town & out-of-town trips and exhausting hours at times. But all in all, it was all good. It filled me up and made me happy. I knew that I was making a difference.

Since welcoming Mom, my life has taken a 180 degree shift. I've stepped down from my administrative position at my school to return to the classroom. No more summer school, weekend, and evening commitments for me, thank God! While I'm still running like crazy at times, I'm doing what I love and I love what I'm doing. In these tough economic times, I feel blessed to have the opportunities that I have as again, I know that I'm contributing in a positive way to the lives of young people.

But when it comes to my home life, I have not found the balance that I need as a caregiver. Fortunately Mom is with a certified care provider that she pays for every week day while I'm away at work. I drive home every day during lunch to administer her insulin and check on her. Each early evening at the end of my workday as I approach the back door of my home, I know my day will now be dedicated to my mom, even if I have school-work that needs to be addressed for the following day. Mom has shared that she doesn't like being alone, and I can tell by her demeanor and body language that sitting in a room by herself is uncomfortable and perhaps, stressful. She is happiest when she's sitting in her recliner in the living room with her coffee and cigarette (we've switched to the new electronic cigs since she's moved it - they're great!) by her side and her caregiver there as well, enjoying a television program or having a conversation as the TV plays in the background. She also thinks having her own room is a "wow" moment, and enjoys sitting or lying in bed, TV on, with her caregiver in the stuffed chair by her side. So where does this leave me? My work table in my art studio is now a "catch-all" and the days of reading my book of the month in my comfy bed are currently put on hold. I know, it's the role that I've assumed for the time being, but I need to find my balance between engaging in the stuff that makes me happy and fills me up spiritually as well as the stuff that mom needs to do the same. Frankly, I'm not there yet. I haven't regularly worked out since August and I haven't produced any art either. My thoughts of taking on-line classes have frittered away as well because I just don't know how to focus on other projects while attending to mom's needs. I know, I know, I need to find support, but finding the time to do that is taxing, too.

So, where do I go in my heart and soul to keep the positive vibes flowing and brightness in my attitude? I focus on the blessings that mom's presence brings to my life. Since she's arrived my use of my native Hochunk language has increased two-fold. We're talking about relatives and family stories that I'm noting in a journal that sits on the coffee table in the living room. When she's the most lucid, her memories of my dad, siblings, and relatives come flooding out, and I attempt to make sense of different periods of history in her life that I never understood. My hubby installed a walk-in tub for my mom and her use of this wonderful invention continues to increase every week. Although it's rough getting her to agree to a bath, once she's surrounded by the warmth of the water and sensations of getting her body scrubbed, out come the stories of past Saturday nights, as bath time to her brings back the memories of preparing for her nights out and about, back in the day. The photo above is mom in her early 20's - I can just imagine mom and my dad cruising around in dad's Packard convertible on a Saturday night!

This week I've got to make the time to find someone to help me to keep myself happy and healthy, physically and mentally. A couple of afternoons and 1/2 a day on the weekend should do it -- now if I could just find that person!!

Autumn is my favorite time of the year

 I just finished reading the book Passages in Caregiving by Gail Sheehy. For anyone considering or currently taking on the role of caregiver for a loved one, I would highly recommend this book. Since August of this year, the lives of those living under the roof of our home has deeply changed, not for the good and not for the bad... it's just change, pure and simple. When my husband and I decided to welcome my 86 year old mother into our home, we anticipated some adjustment, but I believe no one can do enough to plan and prepare when care giving is concerned.  My mother has adult onset diabetes along with dementia/early Alzheimer's. While she is still able to remember us, walk with the assistance of her walker, feed herself, and use the toilet, she is totally dependent upon her caregiver(s) for her care and basic day-to-day needs. The photo (above) is a treasure that I found amongst mom's stuff this summer as I cleaned up her house in preparation for her move; pictured (l to r) are my dear father, my mom, and me.

I'm pledging today to begin this blog in dedication to my mother, Sannay mi nanka (her Hochunk name) who bore and raised me to be the healthy, independent, creative, and immensely happy woman that I am today. I attribute a lot of my demeanor, tenacity, and patience to mom's consistent loving care coupled with her curt style of discipline. Over the years whenever I felt that I was at a crossroads, I'd call mom. I'll never forget one of her pearls of wisdom that she shared with me when I was in my early 20's. She said, "Honey, the book of Melanie has already been written, it's just up to you to have the strength and courage to turn the pages."

Well, in approximately three months this crazy Hochunk woman (me) will be turning 50 years old. (My mother can't believe that I've passed her up as she's been 39 ever since I can remember.) If I equate my life to the book that my mom referred to, I figure that due to the crazy and full life that I've lived to date, I've got to be on chapter 27, at least! And this is fitting, too because I always tell my students that I feel like a 27 year old woman trapped in a soon-to-be 50 year old body. I've been hoping to find a support group to meet with on a weekly or monthly basis, but unfortunately to date I haven't been able to find one close by or to identify a helper to stay with mom while I'm away. So today I throw out my thoughts and feelings into cyberspace in hopes that my experiences as primary caregiver to my mom will help me in my transition as minute by minute, day by day, I learn and relearn to "trust the process" of life.