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.