Thank You

It has been four weeks and one day since Mom went to heaven.

I have so many thoughts going through my head that I don't want to forget. I don't want to lose people that have become so dear to me. I don't want to lose memories, or smiles, eyes of joy, time spent with loved ones.

I have been totally joyously overwhelmed by the outpouring for condolences we have received. For a week after Mom's service the house smelled like a flower shop and I enjoyed the beautiful symbols of remembrance each moment. Thank you. I got home last night and in the mail there were two more cards with sweet notes about both my mother and father. The constant stream seems reassuringly never ending.

I just got a message on my phone yesterday that my voicemail is becoming dangerously full and soon I will not be able to receive more. Proof that I have received so many loving calls checking up on me and loving me and missing Mom. Although not all of them get returned, and usually not in a timely manner, I always listen and cherish them.

Thank you. Thank you. Thank you.

Jeremy's Tribute

I just wanted to come up and say a few things if I can get them out.

My mother was a beautiful woman. She was a teacher, a counselor, an enduring friend, a caring sister, a loving daughter, a faithful wife, and a mother designed by God especially for Shelby and I.

For months we have grieved Mom's passing. We walked with her down a difficult and often ugly path. We watched as she struggled for each breath. We watched and did not look away as her body began to deteriorate until it was only a shadow of the beauty that had been. And now, after that horrific struggle, our mother is home. She now rests comfortably in the arms of Jesus, glorifying our Lord beside dad. I can wish for nothing better for all of us than that we too will one day enter into paradise to finally be at rest and celebrate eternally with our Savior, and our God.

Aren't we sad? Don't we miss our mother's sweet smile and the way her eyes lit up when she looked at us? Yes. We miss her, but our missing compared with the glory she now knows are incomparable.

Even though we miss her terribly and mourn the separation we now endure, we are so thrilled with her eternal victory that we cannot suppress the joy overflowing from our hearts. The sorrow we feel is overshadowed by our joy at her success. Mom is not only no longer suffering, she is now rejoined with her beloved husband to dwell eternally in Paradise.

As this family knows all too well, Death stinks. Having completed that wretched journey, we who say we believe ought to act like we do and celebrate through our tears the success of those we love. In our grief, real as it is, we must not forget the hope of heaven. Paul wrote that if heaven is not real, then we are to be pitied most among all men. If, on the other hand, heaven is real, we have won a great victory. Live in light of that hope knowing that all of these trials have their purpose to perfect us into the image of Christ. The best is still to come.

When Teri looks down and sees us here I do not think she will appreciate any self-absorption. I think she would like to see us honor her memory by continuing her legacy. We have good to do today.

God is sovereign over life and death. Our ‘plans,’ ‘ideas,’ and ‘goals’ for the future ultimately imply an element of human control which contradicts the truth of God's sovereignty as portrayed in scripture. It is error to take life when it has been given, and it is equal error to demand life when it is taken. God gives and He takes away, blessed be His name because He knows better than we do what we really need. He knows and directs what is best for us, which can sometimes be very difficult for those of us planners to accept.

I want to leave you with this story. It is such an example of God’s grace and power and the simplicity of something we struggle so hard to grasp. My five-year-old niece, Emma, has been able to get to know mom throughout the past year-and-a-half. She has watched and observed the slow decline of mom’s health with a grace and understanding far beyond her years.

About a week ago, after a pretty difficult day for mom, Emma and her family were able to discuss mom’s prognosis. Mom was getting weaker and we were unsure of just how much time she had. The following has been retold for us by her parents, with some help from Emma, who gave her permission to share it with you today:

The last time I saw your mom, I could see that she was suffering. My heart ached to see the pain etched in her face, and so that night after the kids were in their beds, I went to my room to cry. The kids were concerned, so Steffen brought them into my room to ask why I was crying. I said I was sad because Miss Teri is so sick and will go to heaven soon. Emma said with eyes as big as saucers, "I didn't think it would come to this. I knew it was bad, but I did not think it would come to this!" She went on, "I just can't believe it. I thought she would be here longer, and now she has to go to heaven!" After a couple of minutes, she stopped, and said, "We better pray." I couldn't pray, I hate the way that illness contorts beauty and leaves only ashes, and Steffen was silent. So, Emma started in on her lengthy dialogue with the Lord of Hosts. (Emma doesn't pray out loud often). Before she started to pray, she asked me if Teri knew Jesus and loved Him. I said she did. Then, Emma prayed with confidence, “Dear God, please take care of Miss Teri in heaven. Keep her safe in heaven and love her in heaven. I hope Miss Terri will be okay in heaven; I hope she will be happy. I hope she will see us too in heaven at the gate. When we get to heaven, Germy will be happy and I will be happy and especially Germy and Miss Terri will be happy. Keep her safe too. Please, God."

After she was done praying, she said, “I will be right back. I have to go and get something.” She came back with her well-worn Bible (you know the one without a cover) and started thumbing through it. Neither Steffen nor I had the stomach to help her; we know which story she thinks is perfect for death. After fumbling for some time, she rejoiced, "Here it is!" Sure enough, she had found the story of Jesus dying on the cross for sins. Steffen obediently began to read. Emma interrupted the reading to comment that it must really hurt to have nails put through your body. I keep thinking about those nails because in the face of real death, Jesus' death becomes all the more tangible and grotesque. We finished the reading, snuggled up, and went to sleep.

From the mouth of a five-year-old came the simple understanding of how the Lord has overcome death. The cross, and our sovereign Lord’s death upon it, has given us eternal life. She understands that with death comes a new life, and in that Truth we find Hope. How glorious that our God came to conquer death and the separation it embodies so that one day soon we can be reconciled to Him one holy church, a bride without blemish. Perfect unity awaits us. No more separation. No more pain. No more sorrow. Perfect joy in the harmony of Christ's redeeming love is our destiny and our hope.

God is good. He gave mom a good, fulfilling life here on Earth. She lived life to the fullest. Her radiant spirit impacted everyone she knew. We have been blessed through her, and the love of Christ that flowed from her. Mom, I will miss you. Blessings and goodbye until we meet again on the other side of sorrow, in that beautiful place where there is no suffering, no pain, and no tears. Now to the King Immortal, Invisible, the One True God, be all glory and honor forever.

Teri S. Brown

On November 17, 2009, Teri Shelby Brown (57) died as she lived her life, with grace and dignity. Her loving children, Shelby, Jeremy and his wife, Naomi, accompanied and cared for her through the challenges of ALS (Lou Gehrig’s disease) and were with her during her final peaceful moments.

Teri was happily married to Scott J. Brown for 32 years until he preceded her in death in 2006. Throughout the marriage they were faithfully involved with the Grace Church family, they delighted in their children and their activities, and, oh yes, Lobo basketball.

Teri graduated from Manzano and received her BA and MA from UNM. During a 25-year career with APS she taught at Truman and Inez. Her leadership ability inspired others and she became an APS District Math Leader and an Instructional Coach at Mark Twain. In 2003 she won the Presidential Award for Excellence in Mathematics.

Along the way she played softball, made posole, led Bible studies, and shared her husband’s joy in nature. She is also survived by her father, Joe Shelby and his wife, Marge, her sisters and their husbands, Janice and Lucky Sells, Lynn and Chuck Colberg as well as caring nephews, nieces, and extended family.

A celebration of Teri’s life will be held on Saturday, November 21, 2009 at 10:00 at Grace Church, 6901 San Antonio Dr. NE 87109. Memorial contributions may be made to:

Young Life – Albuquerque and sent to Grace Church or to A.P.S. Foundation-TLS Math Fund 6400 Uptown NE Ste. 420 W. Albuquerque, NM 87110 Flowers may be sent to Grace Church.

November 17, 2009

It is done. She is free.

Cranes & Swimming

Finally, Monday came and I knew I had four precious days off. So, motivated to get the most of the time, I woke up early and got a run in. Came back and got Mom showered and myself ready. Not an easy plan of events to complete by 10am. Eventually, by about 11 we made it down to my Aunt & Uncle's and with Jeremy also we made it to the open space to see the cranes. Beautiful, the sun, the peaceful field and as Mom approached the cranes, they took off, slowly circled and flew away.

The next day, I had a work meeting and Mom got to see the hospice nurse. After the morning of activities we loaded up and made our way up to the foothills and enjoyed a very relaxing soak in the hot tub. This was the first time Mom has had a soak since she had the feeding tube placed. And thankfully the entire activity was very uneventful. To see her muscles twitching all over her body continually - it must feel so good to defy gravity in such a small way and have a slight change of perception.

Today, we finally made it to church. I had been so looking forward to this fellowship, and was challenged by the events of the morning to be able to enjoy the communion and people. Mom was so glad to see everyone and flitted around giving hugs out. So good to see her enjoy something that has always been such an important part of her life.

So often I find myself wondering what is going to happen next and will I be able to handle what I am faced with.

The Past Three Weeks

So, in the past three weeks we have had an amazing amount of activity and I am pretty sure Mom is tolerating it better than I.

The end of September brought a trip for me to San Diego and a birthday surprise. Although I am slightly embarrassed about the surprise event, we had a great time at a Britney Spears concert. Pretty hilariously entertaining. It was so good to see friends and have a little time to do some wine tasting and some real shopping too!

The next week Mom and I hosted my old roommates from California. Three girls and two beautiful babies. This is the first time that they have experienced The Land of Enchantment and all of its glory. They were impressed especially with the food and the skies. We did Acoma, Santa Fe and of course, the main event - Balloon Fiesta. They now want to come back with the rest of their families. We had a great time and they were totally enchanted.

The next week we got all of us packed up and made the trek all the way across the country to my cousin's wedding in New Hampshire. So, so beautiful and so, so good to see family and celebrate. The plane rides made me a little nervous, but went surprisingly well. It was hard to be that far away from home, but I know that Mom enjoyed our Duck tour in Boston and the beautiful leaves on the way to Jackson, NH and the little bit of snow we got to see and the fun time with family.

In the midst of all this I continue to work full time and still coordinate Mom's schedule. Not an easy job. So many friends and I can barely fit them all into our schedule. We are still doing the tube feeding about 6 times a day and Mom is needing more intense help with the activities of daily living. Very time consuming. She still loves walking and movies and being with friends - a little bragging, but we have been told that her smiles are biggest for Jeremy, Naomi and me. It is so variable whether she has energy or is feeling well. This makes it difficult to make plans too far into the future. But I am so very thankful for the friends and family who have committed to spending time with Mom regularly. As par for the course, I have been able to share some of my professional expertise as Mom is needing more and more skilled care. It is not easy to take care of some one you love in this way, but I do know that it is so important. We are all going to be there someday and to show this kind of love, especially for a friend, a sister, a mother, a child; this can be such a precious time.

I am back at work today, the last of three, and then we will have four days off together, in Albuquerque, to do what ever we want. We are thinking of swimming at a friend's house and taking a walk to see the sandhill cranes.

A Dad Memory

I came home about two weeks before Dad died. I got to spend so precious time with him, doing what Jeremy and Mom had been doing for years. I took him to radiation treatment, pain doctors, chemo, cooked for him, gave him medications. But my favorite story makes me smile every time I remember.

Mom and Dad had decided to spend time in Colorado at Health Quarters. It is a program that focuses on cleansing the body and attempting to rid the body by only putting in pure nutrients and providing the resources so that the body can fight any and all diseases. The diet was purely raw fruits and vegetables: fresh, home made juices and many different supplements. So when I came home I was amazed at how skinny Dad was. I think it was becoming more of a reality that we were not going to be able to beat the cancer. We were just at the point of finally starting hospice and trying continually control the constant pain.

I had taken Dad to a doctor's appointment and we were on our way home. And I had decided that he was far too thin, not getting any good tasting food and not getting better. He didn't have a large appetite so it was hard to get him to eat large quantities of anything. I decided that he just needed more calories and got him anything that he would eat.

We had just finished an appointment with his pain doctor and were on our way home. I asked Dad if he would like a McDonald's ice cream. He said "No." I offered a couple of times and finally he agreed. We stopped and went through the drive through so we could get home and let him rest as quickly as possible. At the order window, the conversation went like this.

"Welcome to McDonald's, may I take your order?" said the voice over the speaker.
"Yes, I would like one soft serve vanilla cone please."
"One soft serve vanilla cone, is that all you need today?" the voice said.
"Yes...."
"NO WAIT!" Dad interrupted.
"Excuse me?" I said.
"We also need a Whopper and fries!" Dad explained.
"OK," I told the voice. "We also need a Whopper and fries, please."
"You might have to eat the ice cream first." I told Dad.
"That's fine." He told me.

So we got up to the take out window and got Dad an ice cream cone, a Whopper and fries. I was totally surprised that my Dad even knew that McDonald's had W hoppers and that he was so willing to eat it instead of his raw veggies. The ice cream was mostly gone by the time we got home and he ate almost the entire Whopper and fries. So strange, I can count on two hands how many times my parents took us to McDonald's to eat.

I hope this story is as entertaining to read as it is for me to remember. I do love and cherish that these memories are so fun. That was my Dad. Witty, surprising, funny and not at all a junk food man.

Up & Down

Life is exhausting. We get up in the morning, shower, brush our teeth, eat breakfast, take medicine, read the newspaper and this is all before our day even starts. Then we work and socialize and eat again. Maybe exercise, a little TV, sweep the floor and go to bed to do it all again in the morning. And then in addition to the "regular" life, we add parties and people, grocery shopping, trips, endless odd errands and so on. Busy.

Yesterday, Mom woke me up at about 2:30 in the morning. Still not sure what the root cause of the problem was, but I got her cleaned up and into my bed by about 3:30. Slept for another two interrupted hours and then got up to go to work. After I got out of the shower, I found Mom in her bathroom and she was just not doing well. Very flat affect, unable to answer any questions, and not directed in what she wanted herself. Lots and lots of saliva, which in turn causes lots of choking and she was needing suctioning and having a hard time breathing. So, I ended up not going to work. I just needed to be with Mom. It was a rough day. In the afternoon, we finally asked Mom if she was having any pain. "Yes, Yes, Yes." Where is your pain? She pointed to her chest. Not what she usually points to. Usually it is her feeding tube insertion site. Little more nervous. We gave her some oxygen and some morphine. I am not sure if it was just not feeling well or the morphine, but she was soon stumbling around the house. This is not something we normally have to deal with. So, finally, I was able to get her into bed, and because she was still so unsteady I decided to sleep with her, for fear that she might get up and fall.

We did wake up twice in the night to go to the bathroom and each time it was very hard to focus on the main objective of the awakening. Then we were up at 6:30 this morning getting ready for the day. Feeding, showering and then off to fix her tooth that she broke the morning before. (She bit her yanker so hard she cracked her cap off.) But now she is ready for Halloween with her golden pirate's tooth. It is now evening and we are doing a little better, but it remains very hard to focus on anything. She just keeps wandering around and around the house.

Day by day. Up and down. Round and round. Good and bad. We take each day as it comes and try and try to find the best and the precious moments. Right now Mom is sitting behind me on the couch and rubbing my back. She is usually the one to get her back scratched - her favorite thing in the world.

Oh, Fleeting Sleep

I have not ever been a single mother, but at times I wonder if this situation has given me a glimpse of what that would be like. I live with someone who is totally dependent. Not always able to discern right from wrong. Needs help showering, eating, dressing, and turning the television on. Needs reminding, encouraging and refocusing often. Dealing with someone who needs to be entertained, but also can only tolerate a certain amount of activity or stimulation. Learning to put someone else’s basic needs far above my own because of the unconditional love. Patience, patience, patience. I know how important it is to invest time. Having bedtime rituals. Being able to survive on three hours of disrupted sleep and going to work for 12 hours. Worrying, while I am at work about who is taking care of my charge. Worrying how much longer I am going to have to be in this situation. Worrying how much longer I am going to get this special moment in time. Having specific feeding times. Trying to take care of someone who is often unable to communicate her own needs and wants. Cleaning the house, doing laundry, dishes, bills, organizing “play dates”.

I remember the movie “The Curious Case of Benjamin Button”. How he was born old, and through his life aged in reverse.

As a nurse I know that dignity is always lost when one is sick and dying. This seems to be so hard for many patients I have taken care of. They get to a point where taking a shower can be the most exhausting part of the day. Where having a bowel movement becomes a public event. When you can no longer walk down the hall without assistance. But I do know that some are able to go through this process with more grace than others. And I do have to say, unabashedly biased, that my mother is the picture of poised grace. Through the past 13+ months she has dealt with the hand she has been given. Her smile gives away her true feelings - joy for the day, and the blessings in the midst of the storm. We ran into an old friend today who I have not seen in years. One of the first things he commented on was Mom’s smile. How happy she is. Then he recalled that she has always been a happy person. I’m not sure if this is totally true, but as far back as I can remember I have lived in a loving, supportive, peaceful, and happy home. This I know is a direct result of my parents’ faith and relationship with the Lord and the love that overflowed from that.

As I have been writing this, I have heard Mom get out of bed to suction her mouth. She has brought me special cream to put behind her ears where her medicated patches irritate her skin. And now she has climbed into my bed and her head is resting on my shoulder. Hearing her steady breathing and her Mom smell are a perfect end to my busy day.

Although “Benjamin’s” body aged in reverse in a fictional story, I do not think that it is a totally unfounded concept. It is truly a circle of life. And I know that I am so blessed to travel part of it with my Mom.

OK.

Ok. I think this is the third time that I have tried to sit down and blog. I am on an airplane and have 1 ½ hours so maybe this captivity will help keep me focused. I think that it is getting harder to share because the journey is getting harder. It is getting more difficult to leave Mom. It is becoming more consuming to be with her. Kind of tough to work and come home and work. Don’t want to take care of her – don’t want her to be sick but also know beyond a shadow that there is no other place I would rather be. Wondering what the next year of my life is going to look like. Afraid. Enjoying my family. Being with people always. So many areas of life can be so bittersweet. Unpredictable. Totally beyond understanding. Wanting answers, wanting healing, wanting peace. Want to be happy without having something else nagging at my shoulder. Wanting honesty, but wondering if I can really handle it. Wanting understanding and ignorance at the same time. Wandering through thoughts and feelings.

Ok. To explain where we are. Mom has been enrolled in hospice for about 1 ½ months now. I am not totally impressed and convinced that this is where we need to be right now, but I am trying to adapt. Jer and I have always agreed that we wish we had enrolled Dad into hospice earlier. But his issues were more consumed with pain. Hospice is so good at dealing with pain. Thankfully, Mom is not in pain. Well, only occasionally at the insertion site of her PEG (feeding tube), which seems to be taken care of with liquid ibuprofen. I am so glad that I don’t have to give her anything more potent than that, for fear that it would suppress her respiratory function. The biggest issue remains to be the incredible amount of saliva she is able to produce. I think we have gotten to the point that nothing is making it down to her stomach through her esophagus. It either goes down her trachea to her lungs or, hopefully, comes out her mouth. We have three different medications that we are using to help minimize and dry up some of these secretions. One is in patches behind both of her ears. The problem is that the skin is becoming very excoriated and bothersome to Mom. The second is a red syrup that goes under her tongue, only 1cc, but most of it is ending up on her shirt, bathrobe, or the carpet. The third is a liquid that we only put two drops under her tongue every 4 hours. It totally tastes horrible. I have checked. Not fair that the only thing Mom gets to taste is so unsatisfying.

Ok. The second and third issues are interrelated. She continues to lose weight even after we started using the feeding tube. So about a week ago we increased the number of cans of food she is receiving daily. Six cans a day instead of five. More calories is good, but it is not normal food. And I have always expected and dreaded that one of the major side effects of having a diet solely of tube feeding is the diarrhea that can follow. As all nurses know tube feeding =’s liquid stool. ALS affects all muscles and sphincters and FTD is the cognitive functioning. All these things against us are not a good combination. But hopefully we will maintain her weight and manage the side effects.

Real Life

So, I first started this journal towards the end of a three week break I had from work. I had done all the errands, cleaning, new carpet and chores I could handle. I had the time and motivation. Now it seems as though life is back to normal. Busy. I think that no matter the situation or stage we find ourselves in, we can always be consumed by busyness. It does take discipline and determination to find time to do things that seem so important, and yet are so easily procrastinated.

I have been so encouraged by people who want to know how Mom is and what is going on in our lives, and yet, at times it is so hard to sit down and write.

An update on what we have been trying to figure out with Mom. She is now enrolled in hospice, they have been helpful in some areas and very frustrating in others. We are trying to figure out the best medications to help Mom with her excessive salivation. This morning, about 3:30, I awoke to Mom's coughing and gagging. I sat with her for about an hour trying to cough and suction as much as we could. I now have the suction machine set up in the bathroom and Mom is becoming more confident about using it herself. She wears patches behind her ears that are supposed to help with this issue also. Unfortunately, they are irritating her skin quite a bit. I know it bothers her and I often have to remind her not to pick at them. It is becoming increasingly hard for her to endure any long outings. She tires of things quickly and her energy depletes quickly. Communication is also becoming harder. The other day I was only getting "yes" to every question I asked. Even "Are you an alligator?" and "Do you want a snow cone?" Not really helpful, but I do know that she still has a sense of humor.

OK, maybe some good things. We read together every night, currently, Charlotte's Web. In the past week she has been to the botanical gardens, the IMAX theater, shopping, walking in the mountains, watering her garden, and has watched lots and lots of movies. She has such dear friends who enjoy spending time with her and caring for her. We are both so blessed by this. Jeremy and I also did some cleaning in the garage and found, among many other treasures - Mom's accordion! Yes, she did play the accordion, before her cheerleading days. And she has loved showing it to her friends this week.

My life - Monday, Jeremy and Naomi threw a surprise birthday party for me. I had no idea. Showed up in my sweats. Very fun, I totally felt like a princess - in my sweats. I got some cleaning done and then, of course, when I have about 6 days off, I get sick. I tried hard to stay away from Mom as much as I could, feeding was difficult. So I am hoping that she does not get sick, because with her weak gag and cough reflex it would hit her much harder than it hit me and it was no fun for me.

Jeremy and Naomi celebrated their first wedding anniversary and this weekend get to go on a little beach vacation - no hurricanes please.

Today has been a productive and restful day, and I got to take care of my beautiful mother.

Ballooning

12 hours of work yesterday and I get a phone call from Mom's cousin. "Do you and your Mom want to go up in a hot air balloon in the morning?" How could I say no. I have been wanting to go up for a long time, and have tried many times but wind is a little difficult to predict. So we made the plan. I got home from work and told Mom and she was very excited too. So we got everything prepared so we would be ready before the sun was even up. Finally, to bed hoping that the weather was going to cooperate.

The plan was we were going to be picked up at 5:45 this morning and head out to the launch site. I was sound asleep and all of the sudden the light was on in my room. Through squinty eyes I could see that Mom was ready to go. All dressed, glasses on, shoes on, bed made - she was ready. I rolled over and looked at the clock 3:48am. My alarm was not set until 4:45am. I guess Mom was excited for our adventure. I know that she must have even gotten up much earlier because it usually takes her about 40 minutes to get dressed. So I had her take her shoes off, get in my bed and sleep for another hour. But then she was ready to go. We got her out of bed about 5:30, gave her a can of food and were off.

We got to the launch site about 7:30 and inflated the balloon. We have seen this done hundreds of times, since the International Balloon Fiesta is here in the Land of Enchantment. But then came the exciting part. The gondola is up and the pilot looks at Mom and me and says, "Hop in!" Yeah! It really did happen, no more disappointing attempts. One more ignition of the burner and we are airborne!

Quiet all around, jack rabbits scampering below and my beautiful Mother smiling as we float over the earth. What more could I ask for to start the celebration of my birthday! Perfect.

Landing can be a little bit bumpy sometimes, but the wind was good and we only had one bump. We continued to crew for a little while, then we went back to the take off point and had a champagne toast. Our maiden flight was a success.

I finally got a very tired Mom home by about 11:00am. Fed her and we watched a movie. I still don't think she has recovered. It is becoming increasingly difficult to schedule more than one activity in the day. She gets very weak and very tired quite quickly. But I am so thankful that she does still like to do fun activities and we have people around that spoil us. Thank you all.

Friends

I am continually amazed by the responses I have received since I have started this written expression of our journey. So many people have told me that they have read it and passed it along. Friends that I was close to in childhood, in high school, at summer camps, church, nursing school, California friends, patients I have taken care of and their families, first and second cousins and new friends have responded. I have received emails of encouragement that I didn't even know I needed. Thank you.

I am also so amazed by the response from many people I don't even really know, these being Mom's dear friends. I knew she was out-going and considerate, generous, loving, thoughtful, fun, honest, encouraging, inspiring, patient, hard working and humble. Now I am seeing the evidence of all of these combined qualities. The other day one of Mom's fellow teaching friends told me about a bouquet of gladiolas Mom had given her. One of Dad's co-workers was sitting behind Mom and me at church a couple of Sundays ago; he introduced himself and told me how instrumental Dad had been in his life and his wife is now in Mom's Bible study. Last week I heard for the first time how Dad and Mom were investing in and enjoying a precious friendship the night before Dad died. More than one friend who knew Mom in high school told me she has always been their role model. Friends Mom had in Young Life before I was born are as close as ever. A friend Mom was a cheerleader with in high school made it possible for Mom and me to go on an Alaskan cruise last fall (will share more details about this one later). And we have a very special eclectic group who have become part of our everyday lives. These friends have learned how to help Mom with her tube feeding, water her garden, and most importantly spend time with a precious friend. The picture of true friendship - always there, unconditional love.

I was talking with my best friend last night and we came to the conclusion that one very important reason we have friends is to walk together. I am so thankful that she is at a point in her life where she can support and love Mom and me. We both came to the next conclusion that at some point I will get to walk with her when she is having trouble standing strong.

I know that the Lord will only give us what we can handle - but of course it is not by ourselves we handle. We need Him and those He places in our lives to work though with His love. Sometimes it is so hard for me to trust that He is really loving. But I am so glad that I have physical love to appreciate too. Thank you all.

Defined

Frontotemporal lobe degeneration - the name for a group of clinically, pathologically and genetically heterogeneous disorders associated with atrophy in the frontal lobe and temporal lobe of the brain, with sparing of the parietal and occipital lobes. (from Wikipedia)

Just in case some of you may not know what frontotemporal lobe degeneration is I thought I might just look it up and define it so we are all on the same page. After this definition I am sure that we all know what Mom is dealing with.

OK, even as an ICU nurse this definition means nothing to a daughter who is taking care of a mother who is afflicted with FTD. Let's try again.

Frontotemporal dementia (not sure if this is quite what we are dealing with or not.)
A table found on Core Clinical Diagnostic Features of FTD.

1. Early decline in social interpersonal conduct
2. Early impairment in regulation of personal conduct
3. Early emotional blunting
4. Early loss of insight
5. Non-fluent spontaneous speech with at least one of the following: agrammatism, phonemic paraphasias, anomia
6. Language Disorder characterized by progressive, fluent, empty spontaneous speech
7. Loss of word meaning, manifest by impaired naming and comprehension
8. Semantic paraphasias perceptual disorder characterized by prosopagnosia: impaired recognition of identity of familiar faces
9. Associative agnosia: impaired recognition of object identity
10. Preserved perceptual matching and drawing reproduction
11. Preserved single-word repetition
12. Preserved ability to read aloud and write to dictation orthographically regular words

Well, still a little technical, but getting a little more concrete. How about I try my hand at a true and practical definition.

Frontotemporal Lobe Degeneration - A condition that is caused by the abnormal degeneration of the frontotemporal lobes of the brain.

Symptoms are as seen, first with difficulty to find words and formulate sentences. Possibly even individuals who are highly educated, normally articulate with an extremely large vocabulary. (Talking on the phone may become especially difficult.) This may initially cause frustration to the individual afflicted and family members. Relationships may suffer as a result of seeming disinterest. Hobbies may shift to receptive entertainment when previously were much more socially inclined. (ie evening out with friends becomes personal movie night) Stress becomes a thing of the past and deadlines may become less important. Conceptually viewing complex, long term ideas may become difficult. Distractions will most assuredly become more difficult to ignore and all interpersonal skills will suffer the results. Memory - long and short term - will be totally intact. But immediate interpretation of information will become difficult to process and respond to. Individually will still seek intellectual stimulation through current events and periodicals, but full understanding is difficult to assess. Humor is spared and individuals are able to communicate enjoyment and laughter and particular preferences to certain people and activities. Emotions are blunted and at times may be inappropriate for the circumstance.

My Mom has always amazed me with her poise, personality, her intellect, grace, love, faith and patient persistence. It's so difficult to see her fall victim to something that takes pieces of this away from her.

With this said I know that Mom remains intact in so many ways. She remembers people at the mall I have never even met. She laughs at all my jokes. She is tender towards me just like a mother always will be to a daughter. She remembers things that I have told her days before. She sometimes is very opinionated. She enjoys being social and being outdoors. She likes me to read to her. She makes everyone in her life know that they are special.

She is still my mother and the love will never end.

Food

Steaks, waffles, lasagna, ice cream, barbecue, beef stew, hamburgers, peach pie, chips & salsa, coffee, pesole, turkey & stuffing, apples, cheese, salad, grilled chicken, oatmeal raisin cookies, yogurt, green chile chicken enchilada casserole, mashed potatoes, corn on the cob, hot chocolate, garden fresh tomatoes, cheesecake, almonds, blueberry muffins, coke, hot dogs - and the list goes on.

I am discovering how oriented our culture is around food.

"Let's pick up dinner on the way home." "Want to meet for coffee?" "Will you bring fruit salad to the party?" "I made batch of cookies to take to work." "Do you want extra butter on your popcorn at the movies?"

A year ago we took Mom to the Cheesecake Factory when we were out in Arizona for an appointment at Mayo Clinic. Oh, how we all enjoyed it. At Christmas we sat at the table for 2 1/2 hours while Mom tried to finish her dinner. Losing muscle strength in her mouth and esophagus and becoming easily distracted contributed to this lengthy process. In March, her diet consisted of yogurt, apple sauce, fruit smoothies, creamed soups, rice pudding, guacamole, and ice cream. The month of May she was having such a hard time getting calories down that she lost 15 pounds.

We had brought up the idea of a PEG (a feeding tube) in February at our first official visit to the ALS Clinic at Mayo. Mom said, "No, no, no." We had many different doctors explain the procedure and how the feeding tube works. We took her to the nursing home Naomi works at, and showed her what it looks like coming out of a stomach. We explained that she did not have to stop eating, but having the feeding tube would enable her to get the calories she needed and just enjoy eating. Still the answer was "No."

Finally about the middle of May, I was at work and my aunt called and said that Mom had written her a note saying. "I need feeding tube." So, June 2nd, Jeremy and I took Mom to the same GI procedure lab where Dad was diagnosed with cancer. She had a feeding tube placed with no complications - praise the Lord. As a nurse I have seen this procedure countless times. I know that it is common and safe. But of course there can be complications.

Mom continued eating for about another 2 weeks before it became obvious that is was too dangerous to eat. Her entire diet now consists of Fibersource HN. It comes in a can, has no flavor, is very sticky and has everything needed to sustain life.

Sustain life? Not sure about that one. She is stronger than me, I don't think I could handle not eating. I love food - and oh how guilty I feel drinking my coffee in the morning when she gets none or when we have German Chocolate cake for her birthday and she just has to watch.

More proof that life is not fair.

Cleaning

When I had my own apartment in California, I had a friend over one time and her comment surprised me. "Shelby, your apartment is like a model home, do you really live here?" To me this was such a compliment. I like it neat, organized and simply decorated. Before I left on vacation, I always cleaned the house and put new sheets on the bed, so upon my return I would have a perfectly clean house. Maybe slightly compulsive, but none of my roommates or family would ever complain that I didn't clean. I am sure that this is one quality that I was taught by my mother.

And although our house has always been neat and well kept, Mom has been here close to 22 years. I realized that, when I moved home last November, there was lots of "stuff" neatly tucked away. Thankfully, Naomi shares an organizational trait with me. We have been working our way through, bit-by-bit, and discovering many treasures. In Mom's closet she had boxes labeled by year. I found some of my first drawings - a face, a house and a pink elephant and also many old pictures, pictures of our perfect family. We had birthday celebrations, Christmas day photos and dress up with friends' pictures. It is so precious to be reminded of times when we were a family, when everything was as it should be.

One precious treasure were books that Mom had made Dad for an anniversary before Jeremy or I were born. They detailed all of the reasons that Mom was in love with her husband. And then as we continued our hunt, we found countless cards celebrating birthdays, anniversaries, Mother's & Father's Days and "just because" days some from Mom to Dad and others from Dad to Mom. Their love never faded. I am convinced that they loved each other more after 32 years of marriage, than they had ever before.

What an inspiration to be the result of that love and get to experience it on a daily basis.

It has not been easy going through these memories. I think it is especially hard for Mom. I wish I could ask her about pictures and stories and things that she remembers. It's not fair that I haven't heard my Mother's voice for almost 9 months.

One last thing that we have as a new treasure of old is a quilt. It is sure to be an heirloom. I had saved all of Dad's old t-shirts from marathons he ran. Then my idea was that Mom could make them into a quilt. During this next cleaning, I came upon them again. As Mom's birthday approached. I thought this would be a perfect gift for her. She is losing weight and gets cold easily so my amazing Grandmother put it together in no time. It is amazing and Mom loves watching movies with her new quilt.

Mornings

One thing that I love about living with Mom right now is her "morning smile".

Every morning, without fail, Tenley (our dog) wakes me up at about 6. He is ready for our 4 mile run. So off we go to greet the day, reduce his energy level and increase mine. Once home, I feed both dogs, then I go to get my "morning smile".

Sometimes Mom is already awake and smiling, other times I wake her up to get my smile and my favorite is when I stand at the side of her bed, very quiet. Her eyes are still closed and she knows that I am there and I get the smile. Love it!

Then I help her get out of bed and take her to the kitchen for her first can of tube feeding for the day. Smiling the whole time!

I am always so struck by the fact that Mom has been through so much and yet, can still have so much joy. She inspires me. I have had a hard time resolving that God would let this happen. Yes, I know in my head that He is good and loving and we live in a fallen world - but please, why Mom & Dad. My heart is having a hard time understanding. They are truly the best people I know, so healthy all their lives. They enjoyed marathons and gyms and I don't think we ever had white bread or chips in our house.

My parents have always been strong, patient, consistent guides for me in life. How desperately I miss that. How I long to be able to trust that the Lord is the one I need to look to. I know that this was their example, but . . .

NINE

OK. So, due to the movie we were scheduled to see for Mom's birthday and then feeding the giraffes this morning, I was not able to share exactly what "Nine" is, that we got at the "Nine Store". AKA - REI. So back to yesterday.

We did wander around the store for quite a long time. Mom was very entertained that we did not know what "Nine" was. The first thing that she took us to was a new water bottle. Strange, because for about the last 2 months she has had about 0% oral intake. Everything she tries to eat or drink makes her cough violently. And the results of her last swallow study showed that she is continually aspirating. So we were not convinced that "Nine" was really a water bottle. She also became very excited by Naomi taking her picture with possible "Nine"s. A dress? A pair of Danskos? A personal weather station? A pair of pants? Finally, I took her hand and closed my eyes and told her to take me to "Nine". And this is what she came up with.

A pair of Teva sandals. We have been waiting so long and now aren't you glad to know that you have a pair of "Nine" in your closet too?

Last night, after the movie, The Time Travelers Wife, I put a very happy, but very tired birthday girl to bed.

Mom's Birthday

I think that since today is a momentous day, I will fast forward about a year. I might go back later, but I want to share what Mom, Jeremy, Naomi and I did today.

August 20, 1952 - Mom was born. Today she is 57.

Happy Birthday Mom!

It all started about 3 weeks ago. Jeremy asked Mom what she wanted for her birthday. Secondary to the ALS, she can no longer talk. So she wrote down "NINE". We think that the FTD is contributing to her inability to find words and communicate. So "Nine" it was, again and again we asked her and it remained consistent. And when we tried to ask her where we could buy "Nine", we got the "Nine Store". It seemed logical enough.

So needless to say everyone around has been teasing her and trying to figure it out. She thinks it is funny & laughs every time we mention it. One night I went through the whole alphabet with her looking for rhyming words - to no avail. But finally we got her to agree that she would take us to the "Nine Store". She told us she knew where it was and would direct us there.

Today was the day, she wanted "Nine" for her birthday, so at about 12:30 today, Jeremy drove, Mom navigated, Naomi recorded the whole trek via photo and I went along for the ride. Perfectly directed we end up at the "Nine Store". She was more than happy and very confident that we were at the right place.

Mom

After Dad passed away, I didn't how life could just keep on moving. But, of course, it did. I went back to California, Jeremy went back to school and Mom kept working. I did see life from a different perspective, and was totally able to relate to my patients' families in a new way. I was still trying to see the positives, which seemed few and far between.

The next summer - 2007. Mom started complaining of muscle twitching in her triceps. It seemed almost like every other time I talked to her it was bothering her. She also elected to have an MRI of her brain because she thought she was having significant memory loss. It showed normal age degeneration - fall 2007.

I got a job at UCLA Medical ICU - fall 2007 - and continued to work at Henry Mayo Newhall Memorial Hospital. I loved my jobs and friends, but found myself wanting something more. I applied for and was accepted to the acute care nurse practitioner program at UCLA - January of 2008.

At this time it was getting more obvious that there was something really wrong with Mom. Her speech was getting very slow and it was hard for her to find words. She tried going to many different speciality doctors. The conclusive diagnosis was "major depressive disorder". Understandable after her soul mate's death.

But after trying lots of counseling and lots of different antidepressants, we were not satisfied that she was "getting better". My Aunt Lynn told me - summer of 2008 - that she was going to make it her job to find out what was really going on.

Finally, we got a referral to Mayo Clinic in Scottsdale, AZ. I still was not convinced they were going to find anything new or exciting. We first went to see a neurologist who specialized in cognitive functioning. After his examination we had another MRI, an EMG, blood tests and a PET scan of the brain. As I reread the medical note, it reveals that all of his suspicions were true.

Mom was diagnosed with frontotemporal degeneration and ALS (amyotrophic lateral sclerosis). I moved home in November of 2008 to live with her.

Dad Continued

Back to my Dad - Scott Brown. He had the most amazing faith and the most amazing support group. Our church family really gathered around him and I know that he truly felt the love. So many good memories and funny stories happened in these three years. And of course I hold them even more dear because November 18, 2006 - at sunset, my Dad went to join his heavenly Father. The pain was finally over for him. A precious card still reminds Mom and me daily - He Is Free! I know that he had such an impact on so many lives, most of all the lives of myself and my brother, Jeremy. He was the picture perfect father. Patient, oh so loving, firm, challenging, ever present @ all soccer games and orchestra concerts. He was also a father and husband who taught by example and this I know, because I see more of my father in the way my brother loves his beautiful wife - Naomi. He also set a very high standard for my husband who has yet to find his way into my life. I am reminded daily of things he said, his witty humor, his spiritual insight and his love for my mother. I know that he will continue to influence my life and that as we continue on the journey of this blog, his life and love will be woven through, as he is in my life.

History

This whole blogging thing is new for me, so I will be learning as I go. Of course, I wish that I had started this long before and thus could have chronologically kept everyone up to date. But, better late than never. I am not sure that I would have been able to write details before this point. So here we go.

To start with, my name is Shelby Brown. Mom's name is Teri Brown. I guess I will start when I graduated from nursing school @ the University of New Mexico - spring of 2003. I then moved out to Los Angeles - fall of 2003. Then Dad was diagnosed with colon cancer - spring of 2004. My mother was his primary care giver for the next three years. When I first heard colon cancer, I was not worried. I thought that people are afflicted with this all the time - they have a little surgery and are "cured" and go on about their life. It was not so easy for Dad. After many surgeries, an ostomy, incredibly excruciating constant pain we finally found out that it had metastasized to his liver and lungs. I got scared at this point. We spent one Christmas morning in the hospital with him. I traveled home almost once a month to be with my family. It was not easy to see my strong father fall victim to such a painful disease.