"I'm Not Gonna Miss You"

It's been six years since Mom was diagnosed with Alzheimer's Disease.

She's had many falls, stitches, staples, broken bones. She never asked about Dad or my Sister both of whom passed away about 20 years before she went into care. I've mentioned them both in passing from time to time, but never really got any emotional response; so decided to just leave it be. She no longer remembers HER sister, or her best friend. I THINK she remembers me as of this writing, but am not sure she can recall my name if asked (I don't). She did see my name on the side of a panel truck as we were driving down the road and pointed at it with an excited light in her eyes, and that's good enough for me! But she certainly remembers my Son. He will be the last person she remembers. The most important person in her world. If there is one thing that brought joy to her life after the death of my Sister, it was the birth of my Son. And he returned that love, until she got sick and was no longer herself.

She has gone from independent mobility, to a walker and now is in a wheelchair. She needs assistance feeding herself, because she isn't very interested in food anymore. She is unable to have a conversation, and no longer asks about her cats, which was the ONE thing she held onto the longest. She doesn't ask to go home anymore. She does ask about the weather outside and will say "I love you', when I tell her that I love her.

It's hard to see her in this condition. But my true heartache is for her. She would hate to see herself in the condition she exists in. Her care is excellent, but she would be appalled at her inability to care for herself, and manage her own affairs. I hear her words ringing in my ears telling me that if she is unable to think for herself to "pull the plug". She was referring to the Karen Ann Quinlan case in 1975 which is so very different than Alzheimer's.  But to her, the idea of being kept alive when her/a person's mind is useless was a waste and she wanted no part of it.  While an Alzheimer's patient does suffer irreversible brain damage they do not enter into a coma. But, both conditions can be considered "a long goodbye".  Of course, I will always keep her safe and well cared for as long as she is healthy. (And that's as far as I'll go down that rabbit hole.)

The cost and emotional toll of caring for an Alzheimer's patient is well beyond the scope of most families. And it has taken a huge toll on my family. If you  haven't heard from me, it's because I don't have any positive news to share. And it's no fun reporting sad news.  I've spent a lot of time trying to keep my pain away from my Husband and Son, but I've only been fooling myself. I know it's affected me and my behavior, and they see right through me. Which means it's affected us all. I can't say how much their support has meant to me these long years. I only wish that my son had been older, past his teens, so his childhood had not been so damaged. I pray every day he finds himself and grows strong when we come out the other side of this. He is such an amazing person, but this whole experience has caused him to withdraw and turn inward. Mom loves him so and would wish for him to thrive and experience the world and the road ahead of him.

But that's not really why I'm writing today....

I'm writing because of the Alzheimer's inspired song that Glen Campbell wrote and just won a Grammy called "I'm Not Gonna Miss You".  His wife was on the TV this morning saying that she is hopeful that when she places the award in his hands it will recall a memory and he will understand it's meaning.  I hope for her sake it does, too.

It's important for anyone who has a loved one with Alzheimer's to understand that these moments of success and recognition are really for us, the survivors, not for the patient.  As the song says: "I'm still here, but yet I'm gone."

Life Is Still A Tire Swing

It only took a few moments, and a margarita, for 30 years to melt away.
And we we all girls again, older and wiser, more stories to tell than there was time for, but still young at heart.

Within minutes we were re-capturing cherished memories from our youth and trying to share great lessons learned in the years since. 
An impossible task to accomplish in just a few hours. Yet somehow we walked away satisfied.

It is a surreal experience to share a moment in time with good friends ~ a lifetime apart yet dear to your heart.
These are some of the people who made me. I could not have the trust and faith in humanity I have now if I had not had some of these friends then.

I feel blessed to hear of their children, their parents, their heartaches, their losses. Their lives, so similar and so different from my own. I wanted to jump into the photographs and be a part of the moments... to dance at the wedding, to sit at the dinner, to be at graduation. Yet through the stories and smiles, I saw the joy in those moments and shared in a way that only girlfriends can do.

It's been a long and winding road, and I have faith that life will lead us back to each other, but until until it does, I hope this evening was able to wash away the years for my friends as it did for me.

Goodbye Mr Spaceman

I was one of the half a billion earthlings (1 of 6 people on the planet at the time) huddled in front of a grainy television set with my family on a cloudless night in July 1969 to see the "moon landing".  My father insisted; I was 8 years old and it changed my life.  I believe this singular moment in time is one of the greatest accomplishments in human history.

Historic Apollo 11 Moon Landing Footage

 

Seeing Neil Armstrong and Buzz Aldrin set their feet on another heavenly body and playfully bound around was awe inspiring in this young girls eyes.

The sign on my teachers wall read "Hitch Your Wagon to a Star" and from my perspective the moon landing was proof that man could touch the Heavens.

It never occurred to me that if I worked hard, there wasn't anything I couldn't accomplish if I set my sights on it. One small step at a time, I would get there. I grew up with the space program as my inspiration. Yes, there were failures and setbacks, but they didn't back down from the President's challenge.

And that night when Dad and I walked outside and gazed upon the moon knowing that there were humans standing there, we understood that there is no amount of effort too daunting or overwhelming in our own life if the great expanse of space could be conquered to safely put men on the moon.

I've traveled a lot of miles since then, and accomplished a lot of goals. I still look to the stars for inspiration and marvel in the magnitude of it all. While it was my parents that gave me the tools I needed to travel life's road, I would like to thank Neil Armstrong and Buzz Aldrin for challenging me to aim for the stars.

Ever since that night, the moon doesn't look so far away.

You've Got a Friend in Me

This weekend I found out about the passing of a colleague from my past.  And though I didn't know about it when he died; I have found myself reminiscing about conversations we had and being sad that such a good man died too young. 

Coupled with this loss is the closing of the Casa runaway and homeless youth shelter where I spent the majority of my working career.  I initially worked the overnight shift there when I was working on my Bachelor's Degree then later after I had my Master's Degree I returned as Case Manager and Shelter Director. It was the first program of its kind in Dallas and marking its closure is also a kind of death.  Many of those who worked there over the years from the first Program Director to the last came to the "closing ceremony".  And, as I walked through that empty building, the memories came flooding back.  Some may say, it's only brick and mortar, but those walls were talking to me. The laughter and the tears all came flooding out.  Good works were done inside those walls. Friendships were made and lives were changed. When I left that building I embarked on a new career - to raise my son.  For many years I didn't look back.  I built a new life and let too much time and space come between myself and the people at the Shelter. I regret this now.  For those of you that read this, I am sorry. 

While I am happy for my friend who has found his eternal reward and trust that all my colleagues have found satisfaction in their lives; my experience this weekend causes me to miss the days when we were in each other's lives every day.  And though I know that is no longer possible, I would like to have the opportunity to reconnect with you whenever possible.  You've got a friend in me.  Let's get together. 

You've Got A Friend In Me - Randy Newman
(Toy Story Edition)

Happy Birthday to Me

My life as I mark the half century mark is both miraculous and tragic. I'm not sure where I expected to be as I flew passed this mile marker, but it's certainly not where I am.

Today is Thanksgiving Day, as it was on the day my Mother left the Feast to go to the hospital for my birth. My nearly 7 year old sister remaining at my Grandmother (Mamoo's) home to await the news as to whether she would have a sister or brother. She was fiercely protective of me through the years, and would not let anyone bully me...except her. My parents had suffered through years of infertility and were thrilled to finally have another child. I grew up knowing how cherished and wanted I was. My parents worked hard to provide a safe home for my sister and me. We didn't have a lot of the things my peers could afford, and I learned valuable lessons from that, though I didn't realize it at the time.

I had great friends in school, some of which are confidants to this day. I can't say enough about the relationships that were forged during my youth and how they have endured and been there for me during good times and bad. You know who you are. Thank you from the bottom of my heart. I spent my time away from school with my horse and riding in Rodeo's. I learned though those competitions, that miliseconds matter, in the rodeo arena as in life. Everything can change and it only takes a moment. Be mindful of the words you say, how fast you drive, the actions you take, the consequences can last a lifetime; try to ensure that they are positive rather than negative.

"It does not do to dwell on dreams and forget to live."  ~ Albus Dumbledore

My Parents taught me great lessons. My favorite parenting lesson that my Father shared with me is "try to say 'yes' when you can." It's too easy to default to "no" when raising kids, (unless there's a safety concern involved, of course). My dad also taught me how to be a handyman, a good thing too, since my Husband isn't very good around the house! We shared a love of music and music theater and saw some great shows. My Father was taken from us in 1991 at the age of 66, much too young. There are so many things I wish he could have known, and that I could have shared with him. Most notably, his grandson, Luke. He always wanted a boy, and his grandson has some of his qualities. I learned after his death that he had always provided coats and blankets to the homeless of Dallas among other charitable acts which he had kept to himself. Truly gifts from the heart from which we can all learn.

My Mother was always very generous with me. We shared a great friendship talking about life, love and family. I loved going to visit my Grandparents with her, the old house they lived in was comforting and Granny and Grandad shared great wisdom with me. She taught me to sew and cook, and of course, shop! We traveled all over the United States and Europe together. My Mother is now 81 and suffering from Alzheimer's Disease. The great joy of her life is her grandson, and I am thankful that both of them have had a close relationship as he has grown up.

My Sister was an amazing woman who, as previously mentioned, was very protective of me both in childhood into adulthood. She is responsible for me meeting my husband, but she also lectured him on what she would "do to him if he broke my heart". We will be celebrating our 20th wedding anniversary next month. When we began trying to have a child, she was thrilled at the idea of becoming an Aunt. Linde was a world traveler, cyclist, snow/water skier, land conservationist, multi-lingual very intense person who was tragically taken from us at age 39, in 1993. She did not live to see her Nephew born.

My Husband came into my life at a time when I was at a crossroads, as was he. We have learned a lot about love in its many shapes and forms through the years, but I cannot say enough how much and how deeply I love him. He has stood by me, through all of the challenges and joys of the long and winding road. I am thankful for his love and company along this journey and wouldn't trade a minute of it. 

"Always remember, your focus determines your reality."

Qui-Gon-Ginn, Star Wars-The Phantom Menace

The double blessing of marring my husband is that I also gained a Daughter. Katie has been a great joy in my life. We've shared late night talks, a trip through the South, a love of college and professional football, and of course her little brother. Most recently she has blessed our family with two lovely grandchildren.

My Son is a miracle that came into our world after eight years of infertility, the loss of one baby and a year of chemotherapy. He was a light after years of darkness and continues to bring joy into our lives. As it is with children, he is a unique individual with ideas of his own and we hope to encourage him to find his own place in the future where he can find satisfaction and happiness with a firm family, faith and educational foundation on which to build. Until then, his lego's remain scattered throughout the house for him to practice with.

I've had the good fortune of family and friends in my life so far even though there has been great loss.  And the journey through Mom's Alzheimer's is challenging and has taught me new levels of patience and compassion.   I am blessed with a supportive and loving Husband and Son and the prospect of a bright future. I think I'm finally starting to get the hang of this life, and that the greatest pleasures most often come in the smallest of moments.

"Some of it's magic, some of it's tragic, but I've had a good life all the way."

~Jimmy Buffett, He Went to Paris

To Roger Staubach, still Captain America

This editorial appeared in the Dallas Morning News SportsDay Forum on Sunday, May 30, 2010
The online version of this article (linked to above) was shortened so much as to loose it's effect. The article, in it's entirety, as it appeared in the paper appears below:

I've always admired Roger, but as a military (Navy) veteran himself, I am not at all surprised to read of his respect to other heroes.

Staubach's kindness benefits soldiers:

The week before last, my brother was sitting in first class on a flight from Dallas/Fort Worth International Airport to Colorado Springs when a couple sat in front of him. He immediately recognized the man as Roger Staubach and said he looked great, very fit. They exchanged greetings, and Staubach said he was headed to Colorado Springs for the inaugural Wounded Warrior games, a competition for injured members of the military.

After 60 or 70 percent of the plane was boarded, a female Army soldier who had lost her leg boarded. Staubach insisted she sit in his seat; she said "no thanks," but he insisted. He took her place in the middle seat way in the back. After a few minutes, the young girl got tears in her eyes and said she wanted to go to her seat and have Staubach return to his.

The flight attendant overheard, and as the female soldier headed to retrieve Staubach, the attendant said she had a no-show and both could sit in first class.

The flight attendant returned with the female soldier, but Staubach sent a double amputee Army soldier to sit in his seat. Staubach remained in coach the entire flight and disembarked last. My brother asked for an autograph for my birthday; Staubauch said certainly. It's a great gift, but the greater gift is knowing Roger Staubach is still Captain America.

— Drew Werner, Addison, TX

I Said A Mother's Prayer For You

I said a Mother's Day prayer for you
to thank the Lord above
for blessing me with a lifetime
of your tenderhearted love.
I thanked God for the caring
you've shown me through the years,
for the closeness we've enjoyed
in time of laughter and of tears.
And so, I thank you from the heart
for all you've done for me
and I bless the Lord for giving me
the best mother there could be!
- Author - Unknown

Behind Blue Eyes

The above photograph of my Mother and me was taken by my son when she was in the hospital after a fall last month. We were having a particularly good visit when this photo was taken. It is remarkable for several reasons, most notably the empty look in Mom's eyes. It is the look of Alzheimer's. It was difficult for her to find her smile that day. Though she was happy during our visit.

When I showed the photograph to Mom, her only comment was how old she looked.

My son submitted this photograph in the 2009 PTA Reflections Arts in Education Program at his school where it won an "Award of Excellence" Blue Ribbon, and will be submitted for district judging.

CONGRATULATIONS are in order to MJM for capturing such a striking, yet loving photograph.

Reboot

I am thrilled to report that Mom will NOT have to have the VP Shunt replaced at this time.

The Neurosurgeon successfully reprogrammed the shunt yesterday using a different machine and said that he doesn't need to see her again for another month. He set the program so that it would not drain a lot of fluid, and will slowly (over a period of months) increase the amount of fluid being drained again. Although, not to the level it had reset itself to...the reason which still remains a mystery; as does the reason his machine was unable to reprogram the shunt the first three times he tried. He said he would contact the manufacturer of the machine to ensure it was working properly. Obviously, if his machine checks out, this could still mean there is a problem with Mom's shunt. If his machine needs recalibration, then Mom's shunt is probably ok. Only time will tell.

Ok...that's a lot of medical babble, but it's good news.

During the visit, Mom was insistent that there is nothing medically wrong with her. She did acknowledge having a fall...on her Patio at home, about "a week ago". (The fall she remembers occurred last "Fall"). Initially, I told her that isn't where she fell, but when she called me a liar and got upset, I let it go. She thinks that it's "Spring" and time to get her tomato's planted.
I asked if she'd visited the vegetable garden at AC, and she said yes, but it isn't "her" garden. After I gave her the medication the staff sent with me, we went for the CT Scan, and I noticed a chip on her glasses. When I told her about it, and said I should make an eye appointment for her, she said, "You are so good to me." I was worried about how she would act when I returned her to AC, but she got out of the car without problem and said, "I hoped you were taking me home. "
My Mother-in-Law visited her a short time later and said that she had a nice visit with her. She reported that Mom said the Doctor gave her a "clean bill of health".

The staff at AC reports that she is becoming agitated more frequently the longer she has been there (approximately 2 weeks if you subtract the days she spent in the hospital because of her fall). I feel confident that this will pass in time, though it may take awhile. Hopefully, her medications can be adjusted give her some relief from her obsessive thoughts. I pray for their patience.

Overall, I'm pleased with the day, and that's all I can ask for.

Déjà Vu All Over Again

It seems that the VP Shunt that is draining the fluid from Mom's brain has malfunctioned and she will have to have it replaced. It is draining twice as much fluid as it is supposed to, and it is not responding to reprogramming. The Doc's have attempted to reprogram it three times, and each time it has reset itself.

The last time we know that everything was in good working order was on 8/24 when Mom had a routine CT Scan. She had the anxiety attack on 8/27 and remained agitated for weeks. So it seems likely that she hit her head while home alone, damaged the shunt and caused the subdural hematoma's that were evident on the emergency CT scans last week sometime between 8/24 and the end of August when she was hospitalized.

The bottom line is that the VP Shunt will have to be replaced. Surgery is pending for later this week, probably Thursday or Friday. I am waiting for the Surgeon to call back after making the arrangements.

So here we go again.

EDIT 9/22: The surgeon called and wants to do ONE more test to try to get the Shunt working again before going into surgery. Says they've never seen a Shunt do this before and they just want to be certain.

The good news is that my son & I had a wonderful visit with Mom on Saturday morning. She was calm and relaxed. The Nurse told me that she was even laughing earlier in the morning. We were able to talk about the sunshine outside, college football games, my son's activities, we took pictures and just relaxed together for awhile. While she did ask about the cats and going home, she was not agitated, repetitive and insistent about the topic as in previous encounters. Although a small victory, it sure felt good after so many hard battles in the previous three weeks.