Day One

Josephine had a full-time job so the daytime care of my mother fell on me.  Even though we had prepared as best we could, the actual experience was a greater challenge than I had expected.  The year before Josephine and I had attended a work shop on aging that included Alzheimer’s, dementia and other age-related illnesses.  The workshop was primarily for nurses and professional caretakers; still we got a lot out of it so we thought we were ready.

At the beginning of my first day alone with her what I thought should have been an easy task took a great deal of time.  Giving mother her medications.  First of all, I had to sort it all out…which pills were taken with food, which ones on an empty stomach, which of her meds were to be taken in the morning, and which ones taken at bedtime and so on, and I was to keep a log of when I administered her meds.  Simple enough, but I was not able to do that with her present because she kept taking things and moving things around so I locked myself in our small office.  Big mistake. 

During the few minutes she was alone she turned on the water faucet in the kitchen and was trying to wash the toaster in the sink.  Fortunately the plug was far enough away from the sink that she had to unplug the toaster first.   After that Josephine would separate her medication into a weekly pill box that was labeled and color coded.

Later that same day I had to prepare a meal.  Mother, of course, tried to help, but she put empty pots on the stove and turned on the burners.  Then she kept taking food out of the fridge and laying the items all on the counter.  Then there was the bathroom.  Mother could take care of her bathroom needs just fine, but she would often run the water in the sink, or she  would flush and flush and flush the toilet.  That day was no different and something out of the ordinary went down the toilet.  I never looked to see what she put down the toilet (didn’t want to know), but like I said, we got to know the local plumber really well.  

But what wore me out the most was the verbal garbage that came out of her mouth.   She  talked and talked about how horrible her children are.   She would go through a list of offenses we supposedly committed against her years ago and how inconsiderate we were and that’s why we all ended up divorced or single… on and on.  In my mind I knew she couldn’t help herself but she managed to find all those sore spots and I felt I was being battered, but I was also terribly grieved. 

Then the pacing: she started a frantic pacing around 2:00 that afternoon and worked herself up to a panic.   I tried to calm her but then she became afraid and started the verbal spewing again that did not stop until my sister came home at 6:00.   I met Josephine at the door crying.  “I can’t do this, I can’t.”  

I fled to my apartment, overwhelmed and in tears.   I fell to the floor crying out to God.  Actually I was so angry at God I began screaming about how this was so unfair.  “Why?”  I asked over and over.  I was beating on the floor when suddenly these words flooded my mind.   "For God so loved the world, He gave His one and only son that whoever believes in him shall not perish but have eternal life.” (John 3:16)  God gave His son.  In a flash I saw my sons and I understood that what I was doing in caring for my mother, no matter how difficult, a positive affect would trickle down to other generations: my children and grandchildren.  This wasn’t about me.  As always, God has a greater vision and a better plan for our lives.  I still desperately wished to be far away, but I wasn’t angry at God anymore and I resolved to follow through.

The next day I dressed in scrubs.  I walked in and addressed my mother formally by her name.  It pained me to do it and yet she responded more respectfully to me then when I tried to get her to remember that I was her daughter.

I learned something else that day.  As I said before, mother would rant about her horrible children, and when I tried to reason with her she would throw God at me.  “God is going to make you pay!”   That was one of her favorite sayings.  So, I pulled out a Bible and said, “Let’s see what God has to say.”   I began reading in Matthew.   Now the only Bible that was handy was the King James version.   I never liked reading in King James; for me the language was a bit of a struggle.  But I learned to appreciate it because as I began reading, mother sat down next to me and listened.   For two hours I read the Bible… slowly... and for once she was calm. 

In talking with others who have cared for their aging parent or spouse, the challenge is that there isn’t a cookie cutter solution, and the patient is constantly changing.   They key is to be flexible, ask for help, and expect the unexpected.   

Settling In

I have been very slow to update my blog because in all honesty I have wanted to just forget the whole project.  I am reluctant to rehash the sadness and grief, because I have found that just bringing it to mind stirs up physical pain so I thought maybe it is best just to let it all go and be done with it.   Last week I met two women.  I overheard their conversation about the stress of dealing with their mothers who both had dementia.   I finally spoke up and shared my experience.   When they left, one woman came back to thank me saying, “I have been feeling so alone in all this and that no one could possibly understand what I am going through.  Your story has made me feel that someone does understand and cares.”  

So, I will continue.  First of all, I want to share an observation.   For the most part women end up being the primary caretaker for a parent or spouse, but sometimes this responsibility falls on the man. Generally speaking, men have more difficulty sharing their grief or asking for help.   I  have learned that it doesn’t matter who we are, how prepared we think we are, how educated or wealthy we are, when the responsibility falls on our shoulders, we all need emotional support,  and some time out.   We must ask for help.  For us it was Hospice that gave us the most support and reassurance as we muddled through this trying time.  We are so thankful for their help and compassion.

Now back to our settling in.  Once my sister and I accepted that we would have to move mother out of the assisted living facility we started looking for a home we could all live in.  We were fortunate in that my dad had a friend who was selling a home that had three apartments.  Perfect.  However, it was old and there was so much work to do to get it livable and “baby-proofed”.  That’s where my dad came in.  In the past he had built several homes so he was very knowledgeable about what needed to be done and so was a great help: and sometimes a great challenge.  Let’s see, there was the electrical incident, the window incident, the air conditioning incident... all the same we appreciated his help. 

In case you didn't know this, people with dementia can pick locks, and they are good at it.  They can wander off and forget  how to get back home.  This was a big concern for us.  Also one of the reasons why mother had to leave the assisted living facility was that she liked to put things down the toilet.  When the patient can still go to the bathroom on their own, it is very difficult to monitor that and after she came to live with us we made really good friends with a local plumber.  In fact, when she passed away they even sent us a sympathy card.   We also had to put locks on all doors to rooms she didn’t need to be in, like our bedrooms and the office.  However, we took off the locks to her room and bathroom so she wouldn't lock herself in.  When we were finished I ended up with a handful of keys that I literally had to keep hanging on my neck so that I could access the rooms I needed to get into. 

We were now ready to move mother in.  My dad went with me to pick her up and she was very happy to see him.   She didn’t recognize me at all, but because he was there she went with us.  We settled her in, my sister came home from work, we had a family dinner and all seemed well.  The next day I was alone with her.

I will continue in a few days.  Thank you for visiting. 

The Importance of Thomas

For me the importance of Thomas cannot be stated simply, but for you to understand his importance I must give you a little history.   Some of the things I will be sharing are still painful for me, and may even touch a nerve for you.  Yet I feel in my heart that there may be some of you out there who can gain some comfort or insight through my experience.  As much as I hate to admit it, painful experiences are often the best teachers.

I have a dear friend, Ginger, who I met initially as a massage client.  When we first met she was in the midst of caring for both her mother and father.  Her father had Alzheimer's.  As she shared her story with me I realized she had given up so much of her life to care for them.  I remember saying, "Never!  I will never take care of my parents."  But no matter how loud and emphatic my declaration, I learned, if it is something God is calling you to do, it is useless to say never.  Whether by a dramatic event or a gentle push, God will eventually get our attention.

Childhood was such a mixture of great experiences and yet some pretty horrible experiences as well.  We are not sure if mother was bipolar, she was never diagnosed as such.  However, she could flip from hot to cold in a second.  As nurturing and caring as she could be, she could also be violently abusive: which kept us always on our guard.  Mother's forte' was guilt.  We were responsible for her unhappiness and we owed her.  This mantra continued through to our adulthood and increased dramatically as she began to decline.  My father isolated himself from us as much as he could, but he too had been abusive, especially toward my mother.  Just before their divorce he tried to beat her to death.  We were children and we bore witness to the aftermath of that beating and it was pretty gruesome.  They both "disciplined" us out of their own rage and frustration and many times we were left with bloody welts.  In addition to the physical beatings, they both tormented us verbally and shamed us in front of others, and they made sure we understood that we deserved it.  Even though my father left when I was ten, I include him in this narration because ironically he played a role in the caring of our of mother.

Mother was an enigma.  As much as I wanted to know her, she always remained just out of reach: a shadow I couldn't quite get hold of.  She was born in Mexico in the late 20's, her father died when she was twelve.  She was poor and uneducated so that meant her options were limited.  Despite that she had a drive to better her life and ours as well.  She had a sophisticated style of dress despite having to buy clothes in thrift stores.  On the other hand, my father was from the South and even though he happily immersed himself in the Mexican language and culture, he had no ambitions to elevate his standard of living.  Keep the status quo.  Needless to say, they clashed.

When I reflect on the positive things about my mother I always think of her gardens.  She could grow anything in any environment and her plants always looked so beautiful.  As a child, I loved playing in  her garden and I realize now how much those memories have inspired my more recent drawings.

Mother also sewed most of our clothes.  If we had a special event to go to she always made sure we had something new to wear.  She also made sure we ate well, that our house was clean and she showed up for school programs.  Having worked for the school systems myself, I learned to appreciate the value of my mother's efforts, and I guess that is what planted the seed.  As much as I did not want to care for her, I could not deny my mother worked hard for all of us, so yes, we owed her.

My particular struggle, however, was that I did not want to take on this job out of guilt.  By then I had returned to church and had been working on my relationship with God.  I knew what the Bible said about "honoring our parents", but as much as I prayed about it, I still could not make peace with it.  What finally shook me loose was the fear that if my sister took on this job alone, the stress could kill her.

My sister Josephine was not only my friend, but she had often stood in as my mother on many occasions and she was dear to me.  I have to admit that the fear of losing her overshadowed any acts of obedience to God or the honoring of my parents.  That was the driving force that moved me: literally.  So, I jumped into that big ocean to rescue my sister from drowning only to find that we both desperately needed rescuing.

This is Thomas, a very small cat who made such a huge impact on our lives.   

Thank you for visiting my blog.  There will be more on Thomas and my art work in the coming weeks.

The Beginning

I can't remember exactly when I started the crayon art: however, I have some drawings I know I did while going to massage school in the 90's.  So it has been at least 20 years.

Outside of the 9-11 drawings not much changed in my art work until I began caring for mother.

This was one of the first pictures I drew while I was caring for mother.

This picture was also drawn while caring for mother, but I also used this picture as a template for a wall mural in our house. That was a challenge.

As I drew more my sister kept insisting I should frame my pictures.  My brother-in-law kept insisting I'd been smoking something illegal.  I wasn't, but I must admit there were times I felt like dipping into my mother's valium!

Finally my sister took it upon herself to frame a couple of my pictures.  I was moved.  It was the first time I saw my pictures as art.

I am getting to Thomas.

This picture of Thomas with my mother was taken a few weeks before she died.  As strong as she had been suddenly her legs wouldn't hold her.  Normally Thomas didn't sleep with mother, but when she became bedridden he stayed with her until she passed.

To fully understand THE IMPORTANCE OF THOMAS , I must go back in time. 

In my next blog I will share more about the history of my journey and, of course, how Thomas came into our lives.
Until next time, thank you for visiting my blog.

Crayon Art by Nana B

I began crayon art several years ago when I wanted to de-stress after a busy day.  I didn't think of it as art, I called it "doodling", just scratching out shapes and coloring.

Sometime ago my sister moved to Alabama to care for my mother who had Alzheimer's.  It soon became apparent she would need help, so I moved from Florida to help her.  The job was far greater and more stressful than either of us imagined.  Mother was physically strong, but could not engage in normal activities or reason which frustrated her, so she constantly paced back and forth throughout the house.  Daily verbal and physical outbursts were common and there was little we could do to calm her.

However, the only time she would sit quietly for some period was when I read the Bible to her or when I colored.  Mother would sit beside me watching, and at times she would pick up a crayon and attempt to draw -- and sometimes she'd try to eat a crayon.

After she passed I realized how much my art had evolved.  God had given me a gift that I not only enjoyed but also it had allowed me to cope with a difficult situation.

And then there was Thomas...

For me the move alone was emotionally and financially draining.  I had left my children, my precious granddaughters, my business, my friends: my life.  I discovered rather quickly the difficulty of communicating with my family either by phone or letter.  What could I say?  My life was in turmoil, my emotions were wracked with fear of the unknown, and I was depressed.    Surprisingly a way was provided in the form of a lost kitten: 

"Thomas was an ordinary cat that showed up at a not-so-ordinary- time."  So begins the first of many Thomas stories that helped me communicate with my family.

                                                                                   

Just like everyone else on September 11, 2001 I was glued to the television watching the disaster unfold, but also I was waiting to hear back from my sister.  She was trying to track down my brother who is an airline pilot.  We didn't know if he was working that day.   It took awhile to find him, but we were relieved, he was not working that day.  Yet, as everyone else, we remained shaken.

                                                                       
                                                                            

Thank you for visiting my blog site. In the following weeks I will introduce you to the Thomas Chronicles, a remarkable story of how a kitten's innocence formed a bridge in  my relationship with my mother,  an Alzheimer's patient, during a critical time. I look forward to sharing my story and artwork with the hope that they will encourage others who are struggling with the demands of caring for a loved one with Alzheimer's.  

                                                                                

                                                                                

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