Monthly Archives: December 2012

Mom is seeing dead people at the back door…….Should we be worried?

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It did not matter how many times I told mom I needed to rest today, she never stopped waking me up and checking on me. What part of I need to rest doesn’t she get?

She had no trouble sitting down in the living room, this morning, to tell me all about her dreams, after I crawled out of bed. She cornered me when I got comfy in my chair with breakfast, told me to turn the TV down so she could talk. 

This terribly important thing I needed to hear was all about her crazy dreams last night. Apparently she spent the evening playing hostesses to a lot of dead relatives. First was some lady she went to grade school with. She said they spent hours talking about why there were no cows in the barn.

Her next guest was my great-grandmother. They talked about raising my sisters and I. Mom made hoecake, coffee and they had honey.

Next was her dad, my grandfather. He, mom and my great-grandmother continued until Granny had to leave. Mom saw Granny out and Grandpa decided he’d attempt to make more coffee, but one ole’ little problem.

Grandpa died in 1971 before automatic coffee makers were invented. He was making a mess in Mom’s kitchen and she always loves a good mess to clean. Of course she was tickled to show him how to use the new fangled coffee pot. They continued their conversation and she talked about all her brothers and sisters. She says she enjoyed seeing him.

She was disappointed her mom had not visited. She says she couldn’t understand why grandma didn’t show, but she says she understood. Grandma F. Had she a rough time when she passed. There was something in her story about someone in the outhouse. By that time I was zoned out. 

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A Day of Reflection

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Today has been busy, but when I got to where I could relax, I did a lot of thinking. It isn’t often that I have myself, much less make time for reflection. 

Mom and I spent the afternoon at the ladies Christmas party at church. I participated in the While Elephant Game for the first time ever. That is actually incredibly amusing. We had the best time, but I have to admit I’m feeling a little guilty. The Pastor’s wife stole my first gift from me, so when I had an opportunity, I took it back. It was so pretty…….

For a physically disabled woman, I have a lot on my plate. Together Barry and I deal with way to many issues for any sane human being, much less two people with our health issues. Barry is still recovery from a stroke and has not been declared stable yet. I, of course, continue to deal with the remnants of a brain tumor, the complications which developed from the partial removal of my gangliocytoma and the further/future effects, that the genetic disease, I have to deal with as they come up over the rest of my life.

I ask doctors about my life expectancy, and no one can answer my question. With the possible serious health problems, that can arise, from Cowden’s Disease my life is literally in God’s hands. I always said I enjoyed holding positions that made every day different. It kept the job interesting. I never dreamed my job philosophy would role over into my life. 

My experience as a nurse has definitely made managing my aging mother’s care, helping my husband cope with his health issues and with my health issues. Coping is a huge part of dealing and accepting a serious illness.  

I wouldn’t call my coping skills good, but they have gotten me this far, of course that is with a little pharmacological assistance from my multitude of physicians. I dealt with my emotions, illnesses and life in general, after brain surgery before needing help. Ironically enough, it was the new Chipmunks movie that was my undoing. While at the theater with my sister and nephews, I started blubbering at a sweet moment involving Theodore, and couldn’t stop crying. I continue to avoid extremely mushy moments or overly gross moments on television or at the movies. I’ll be a crying mess for hours.

I try to stay busy. Barry and I have found a church home that we enjoy. We stay busy there, with whatever they will let us do. I try to stay active. When I left rehab, they told me to keep moving. That one statement has helped me through more tough times than you will ever know. When I feel bad, I add a little time to my exercise for the day. Improving my strength keeps my body more stable and it functions better. My stamina for, daily life,  is better when my exercise regimen is weekly. Otherwise, one small trip out of the house will have me in bed the remainder of the day and pooped for the next 3-4 days.

One thing I have learned, is to listen to my body. I never did this before. I let little aches and pains go by without attention. My primary care physician told me, 10 years ago, she thought I had a brain tumor and ordered a CAT Scan. I thought she was nuts and didn’t go. 10 years later, here I sit. Having lived through a nightmare that came close to taking my life.

Barry went totally out of his comfort zone with our new puppy dog for me. He had German Shepherds for years. I grew-up with Boxer Bulldogs. We picked out the sweetest, white-footed Boxer with the classic Boxer wag. She is simply gorgeous and incredibly smart. She loves Barry, actually waits by the door for him to get home. It is so sweet. She has stopped me from burning the house down a few times. When I’m home alone, she follows me everywhere. I think she actually knows when my bad days are. She has actually gotten in my lap and refused to move on really bad days. She even checks on my mother. She is a sweetheart.

I learned a long time ago that God isn’t finished with me yet. He’ll show me his plan as he is ready. For all I know, I’m in the middle of His plan as I type. Not my place to question, just live my life through Him. If I had followed through with my PCP ten years ago, I would not have met Barry and be where I am today. I love my new life with Barry and wouldn’t change a thing. We are enjoying rediscovering our Christian life together, as well as falling in love all over again. How often do you get to fall in love with your soul-mate all over again?

Case of the “Unknown Pants” solved…….

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From my previous post, you know about the pants that appeared in my dining room and no one wanted to claim, well……….

Through a little detective work, we were able to get culprit to admit her guilt. As a family, we had gone to a Christmas play in Athens and then Mom and husband went on to my sister’s church to see their production of the “Singing Christmas Tree”. Barry and I headed home, 2 programs would have done us both in. 

We received a call from mom around 10:30pm wanting to know if James could use the guest room. The next day, upon returning from church, we found the pants. Mom swore she didn’t know where they came from. Apparently, James needed some help with a hem and asked mom to help. She had instructed him to take them to the sewing machine upstairs. He got to my dining room and lost his train of thought, sat the pants down and started to exercise on my machine. He totally forgot the pants, as did mom. All I could picture was, my stepfather running around town in his underpants, when I found out that mom and James had planned for him to spend the night all along. I thought to myself, she’s getting sneaky. if she drives after dark. 

Memory played a huge role in this entire incident, Mom and James are both the culprits. When things like this happen around the hose, I automatically go to Barry and I forgetting about something we have done. It feels kinda nice to know it wasn’t us. Of course, it is scary for her and anyone else on the road, if she drives after dark. 

Sooooooooo………mom did it!

Mom and the Jello Chase

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Mom is sweet as she can be, but she can have her scattered moments that make you wonder. I don’t know how I would act, if I woke up one day and mom was totally organized. She can be everything from cute as a button to drive you insane confused.

Tonight her difficulty was lemon jello. She made three different trips to the store to get everything she needed to make a dessert for a church party tomorrow. When she arrived home, she realized she had pineapple jello, not lemon. She headed back to the store to make the switch and she couldn’t find it. The boxes were a mess and mom was tired, so she returned home to ask if we would swap it out for her. In all of the hoopla, mom came in and laid her Jello down and lost it! She had the kitchen in a mess to prepare this dessert and the jello was now somewhere in her mess.

We, of course, said yes. Mom went to retrieve her jello to swap out when she discovered it was misplaced. She was so frustrated by this time that Barry told her not to worry, we’d take care of it. 

We get home with her lemon jello, and she states, “sugar-free”? I just walked away………..

Brain Tumor Issues Again!

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I’ve been blessed with the fact that issues caused by my brain tumor are constant and tolerable on a daily basis. I suppose that is a good way to put it, but they do have those days when they act like an angry toddler not getting his/her way. Well the toddler has been a little rascal for over a week now.

Not only is my heart acting like a fool, I feel like my face and top of my head is attempting to learn the tango. A few months after my craniotomy, I developed a facial tic which grew into making every muscle from my shoulders up, twitch uncontrollably. The neurosurgeon said he could operate and make me worse or I could try medication management. We chose medication management. I have been through a battery of medication that actually gave me some relief, others made me close to crazy or mean as a snake.

I finally got on a regimen of drugs that actually made life easier, then they sent me for a Botox referral. Botox helped my neck muscles, but it did not do much for my vocal chords. At one point my vocal chords were twitching over 200 times a minute. I could barely talk, but I missed singing more than anything. My voice disappeared for 3 months, instead of getting stronger. It was amazing to be able to sleep on my stomach for the first time in 2 years. I honestly did not realize I couldn’t turn my neck to the side. It was great!

Off to the Otolaryngologist(spelling?). He does the Botox in my neck and vocal chords. Friday afternoon, I get the pleasure of Botox injection into the roof of my mouth for palatel myoclonus (spelling?). Apparently, this might not only fix my twitching palate, it might fix the ear trouble I have experienced since surgery. We’ll see.

I truly am not looking forward to it, but the Botox has helped in the past. Otherwise, I’m headed back to let my neurosurgeon make me worse……I’m not ready to cave-in yet

What would you think?

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Today, I had a second echocardiogram to make sure nothing is going on with my ticker. At one point in life, I wondered if my heart was the only good body part I have, then it starts going haywire. I started passing out, staying more dizzy than usual daily, and feeling like I have a flock of butterflies in my chest.  Then my legs and ankles start swelling out of the blue. Along with that came shortness of breath. Sooooooooo, off to the cardiologist. He ordered blood work and the echo. Now comes the waiting phase, again….

During the echo today, the technician states “what in the world is that?”, as she circles whatever she saw. She quickly changes the subject and attempts  to get my mind off what she said. As I was leaving, she repeatedly told me that I’ll hear from the office soon and to call by the end of the week if I haven’t.

I cannot get what she said out of my head. What did she see? I’ll go nuts before they call. I’m learning to hate time again. God grant me the strength and wisdom not to worry and the wisdom to handle it appropriately.

The case of the “unknown pants”…………

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pYou have to understand, we live in a house where three people with memory issues reside. Maggie, the dog, has a best memory in the house. I cannot figure this one out. Just wish we could figure this one out.

When arriving home from church, yesterday, I discovered a strange pair of pants lying over a dining room chair. They were a medium gray pair with a white pinstripe. We had no visitors to match these pants and we could not discern how they came to be in our dining room. All of the doors were locked, all windows closed tight, and Maggie did not appear to have had a mid-morning snack. Yet, here they are and how did they get in the house?

Barry denies knowing anything about the pants, other than they did not belong to him. The pants were not meant for a tall man, Barry is six-foot tall. These pants are meant for a munchkin. To my knowledge, there have been no munchkins in the house. Is Maggie throwing neighborhood parties when we aren’t home? She does open the doors by herself when she really wants in a room, or out. I’m writing this and haven’t got a clue where they came from.

Mom says she is not positive, but she doesn’t remember any visitors leaving without their pants. Mom is probably the culprit. She does minor alterations for people. But swears she knows nothing. 

In a house full of people with memory issues, what do you do when something like this happens? Just another example of the mysteries of the human brain. How else can you explain this?

December 2011

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Today, this second Sunday in December, was difficult to get through. At the same time, it has been a joyous day! The love of my life suffered a stroke that should have taken his life, but through the grace of God and the miracles of modern medicine he is still by my side and we are closer now than ever before. Enjoy and make the most out of life because you NEVER know when you will be called to glory. Time is truly a precious gift from God. Barry and I have both been through a lot since 2009, but we are still here and still going strong.

Last year, at around 8:30am, Barry was assisting one of our residents with his morning care. The resident called for me to come quick. I got in the room and Barry said in a funny voice, “Honey, I can’t get up, help.” I leaned over to grab his arm, when I realized he couldn’t grasp my arm, I quickly told him to stay put and not to move. The thought running through my head, was “‘you’re the  strong one, Barry….You cannot be having a stroke!” I knew he was, but that thought would not leave my head. I called 911, checked on him again and went to get his medicines.

Gwinnett County EMS was on top of it that day, they were there in a flash and my heart sank as I watched them drive off with my sweety. I knew I’d never be able to drive, so I had called my sister to give me a ride. She was 20 minutes away. She made it in record time. My head was racing with all sorts of things that I could not shake. I was crying then as I am crying now telling this story. The local ER was on the ball and had Barry ready for transfer when we arrived, Kris and I attempted to keep up with the ambulance, which was impossible, so we decided to be safe. At the next hospital, Barry was already on the table having the “Mercy” procedure performed. True to the doctors words, Barry was regaining use of his left side within 12 hours.  

One year ago, I got the opportunity to fall in love with my soul mate all over again. The stroke took Barry’s filter away. He’s adorable and we are enjoying rediscovering each other all over again. I love him dearly and do not know what I’d do without him.

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This really happened….

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Anyone keeping up with us is aware that Barry and I had to close our business. We were not able to handle the patient care once Barry had the stroke. I was attempting to keep the business going with part-time help, but once we both were incapacitated to a certain point, we had to make the tough decision of closing. 

We decided to tell the resident’s on an outing. It will be an outing neither of us will ever forget. We went to Wendy’s for burgers. Our staff person and I sat the residents down and started numerous trips back and forth to collect napkins, ketchup, forks, salt and pepper. Barry went to place the order. Barry got my attention and pointed toward the tables. 

When I turned around, two of our four residents had opened their straws and were sipping ketchup from the little souffle cups Wendy’s supplies for ketchup. Everyone in the restaurant had turned and were stating at these two. What do you say? What do you do? I walked over to the table, sat down and quietly asked them to put the cups down. I told them their meal was being prepared, to have a little patience. They thought that was part of their meal. It was, but it didn’t need a straw……

The human brain is an incredible, as well as, strange organ. Through my years of nursing, I have witnessed many outrageous and many marvelous things. After 20 + years of nursing, I never would have put myself in this situation, but I can understand/sympathize with things I have witnessed over the years now. This brain tumor has truly opened my eyes to the world around me!

 

 

 

We found time for ourselves….

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Last night Barry and I were scheduled to help setup for the Christmas Program. To our bewilderment we found ourselves with an evening of free time. We were both exhausted and actually a little thrilled to have “us”  time. We rode around for a bit looking at all the beautiful Christmas decor (there are some incredible imaginations out there) and headed home. We did a little housework, said goodnight to mom and got in our favorite chairs in the living room.

Once vegging-out in our chairs, checking a little email, I was sound asleep with my tablet in my lap. Sometimes “taking time for you” means listening to what the body is telling you. In our case it was Sleep, glorious Sleep. We both needed it, we have a long weekend scheduled.