The below letter was written by a good friend and colleague of Mary's. Pat Blahovec (Mama B to me) sent this to the church and it was read by the priest at my mom's funeral. We had no idea she had sent this and so we sat, eyes welling with tears, both stunned and grateful for her spot on recollection of my mom. While Father Ken was reading it aloud, I whispered to my sister "I think she covered everything we have in the Eulogy, and maybe better, ha" Christina smiled and nodded. As daughters, it's easy for us to say how great our mom was--it's almost expected. But to hear a close friend and colleague to my mom echo the same sentiments, touched everyone's hearts; she described perfectly Mary Hall's character -- love through actions.
Thank you Mama B for your beautiful homage to Mom and being her friend over the years.
Mary was the model mom for the neighborhood. She did it all-and always willingly, humbly and with a smile. She raised 5 children, attended all their school and sporting events. Volunteered countless hours at the school, PTA and CCD functions.
Mary would arrive at a PTA meeting with one in a stroller, one on her hip, and 3 in tow. She might have been a couple of minutes late (wonder why) but she was always there. And always the first to volunteer for anything. She was a good worker and obviously a good organizer. She was part of a group of parents that would recycle newspapers and plastic as a fundraiser. There was a huge dumpster in the school parking lot, and there would be Mary -in the dumpster placing recycled items before school started.
Mary could do anything. She could pull off a meal for 7 in a minute with one hand while helping with a school project with the other. She could fix everything. Having lots of mouths to feed she sometimes had a car that was not always functioning well. It was not unusual for her to pull off the road and add water to the radiator or work on the starter switch. But the best was when she was in the Harrison Park Elementary School parking lot. She had her van. When she slid open the side door, it just kept going and fell off the track, resting in the parking lot. Not too much for Mary, she fixed that too. She said, “I’ll have to tell Dan about that.” It didn’t even faze her!
When her children got a little older, she became the nurse at Harrison Park Elementary School. Now she was the mother to 600--nothing for Mary. She cared for each one as if they were her own. The kids loved Mary and sometimes she had to set limits on the “frequent flyers” who would rather be with Mary in the Health Room than in class. Mary put her all into the job. Her supervisor never even checked in on her work-no need, it was always done and then some.
Mary’s Catholic faith was very important to her. She made sure her children were brought up in the Church. She was active in their formation process at church and at home. When the Hall family came to church-they needed a whole pew! They sat in front and never left early!
I have missed Mary for several years. She was my sounding board professionally and personally. She touched countless lives and her service was Christ like. Always for others, never for Mary. She was a faithful servant, well done Mary.
I am so proud of how her family stepped up to help her during her illness. Caring for her at home was not an easy task. I truly don’t know how they did it, until it occurred to me that there was a little bit of Mary in each one of them. That’s how they did it.
My mom and grandma are both affected with this gene (more on my Nanny in a later post) and by some ironic cruelty, they began their descent the same time. They were alone together. Loved ones afflicted by FTD can see, listen, and feel the free world but cannot express their thoughts and feelings freely. Family members and friends can visit, but communication will continue to decrease over time. Summer and Fall of 2008 Mom and Nanny could still go out on their own and by the same time the next year, someone needed to be by their side to help with the simple task of walking. Driving had long been out of the question. If you are the afflicted one, family eventually starts to act as though you are not around, talking about things they normally would not talk about in front of you.
Family and friends still visit but they begin to just sit or not pay direct attention to you. If there is communication, it is a one-sided conversation because within a few years you will lose all ability to speak and communicate. You lose concept of time; there is no difference between a day and month anymore. Your days begin to repeat themselves; sitting, sleeping, and watching TV. If you’re lucky, you can do puzzles or cook until that goes too. Soon your family completes all tasks for you like: when you go to the restroom, eat, sleep, drink, what you wear, and when bath. Your family misses you more and more everyday even though you might be five feet away. When the ability to speak is completely gone, your husband or daughter may hang on to things like their out of date cell phone in fear of losing that last voicemail of you on it that they listen to daily just to hear your voice.
Over the course of that first year – Dec 2007 to Dec 2008 Mom (and Nanny ) went from a woman who had problems with a few words but still an all-star nurse and parent to 5 to a person who had to leave the job she loved, forgot how to spell words like “love” and “cereal” (even when she was looking at the word), lost her driver’s license, and unable to cook for herself without supervision. Two years later, at the end of 2009, she will require someone there daily to show her how to bath, wash her hair, and prepare food for her. Child gates will be put up to block off stairs, locks will be changed to keep her from escaping (literally) and wandering the neighborhood. Toaster ovens and microwaves unplugged, oven knobs removed to prevent fires as she randomly walks the house and turns them on. Then the Depends and incontinence will come…lack of depth perception and the fear of walking on dark mats, escalators, icy steps… she will cling to my dad like she never has before; a child in a crowded place, uncertain of her surroundings. Swallowing will become difficult and the family will learn all about “ThickIt” and Ensure, pureeing food, handicapping the bathroom…the list goes on.
Over the next few posts, we will tell you a few stories – and some quite funny—of “instances” or snap shots of a day in the life with my mom over the years. We’ve had some good laughs and cries and now that we have given you the background in more variations than you probably cared to hear, we want to share with you some samples of the day to day and take you through the years.
Thanks again for listening….
(Begin Post 7 : Fall 2008 – “I want ‘J’ )
“I want J”
Diagnosis or no diagnosis, one thing is always true – tomorrow will come whether you want it to or not.
Once mom was officially diagnosed that August, it took away any hope of her returning to work in the Fall. As a nurse, she was now a liability if anything happened. My mom was given a few months of medical leave and then would have to retire.
I recall trying to tell her to see this as an early retirement – an opportunity to learn those hobbies she always meant to try, to focus on her for once instead of others. But my mom knew the real reason she wasn’t working.
I’ll never forget coming home from work in late August (I was still living at home for another month or two before I had to go back to Baltimore) and finding her sitting on the corner of the couch, head propped up with the back of her left hand as she leaned onto the arm rest, feet curled up beside her, and just looking down at the carpet, her eyes blank.
“What’s wrong Mom?”
She shrugged her right shoulder and shook her head. It was obvious she was doing everything she could to hold back the tears.
“Mom, what’s wrong?” I ask again. “What did you do today?”
“Nothing, I cant. [pause as she tries to find the words] I nothing…[pause] to do.”
And the tears came for both of us as I sat down next to her….
Our family had to regroup.
First, even though there was nothing a medical doctor could do in terms of treatment (there was absolutely nothing to even slow the disease down) at the present moment, mom will eventually progress and we needed a doctor to monitor her and help our family cope with the changes. Eventually, mom’s physical health will begin to deteriorate as well, so we needed a doctor. Dr. “diagnosis Mary through a 6 sentence letter” had moved out of state to another hospital (See POST 5: The Beginning—Part III of III- Confirmation to learn all about that fiasco).
Second, and as that particular afternoon in August clearly demonstrated, Mom was still lucid and aware of what was happening– her mental health was the number one priority. As my uncle said in a conversation to me, “she needs to still get up every morning and have a purpose in life. Her needs will change every day and everyone needs to be fluid and ready to adjust. Anything that can keep her feeling independent without putting her or others in harm’s way should be considered.”
Third, routine. As my mom progressed, routine will become more and more important and so the sooner we got her into one, the better it will be in the long run.
Adam (my brother) and I ended up joining the same online support group for FTD/PPA caregivers/family. Joining this group was the best decision I made. I remember my first email to the group – introducing myself and giving a brief background on my mom and her current state. I asked if they had any advice on what my mom could do to stay busy. Her children were all now young adults and out of the house. She could no longer work. What can she do all day long? My inbox was instantly flooded with emails full of advice and comfort.
Legal and financial advice: “Get a will, living will, power of attorney, medical power of attorney, etc. in order ASAP. Do not wait and your mom may still be able to present her wishes before the disease takes that ability away from her.”
Advice on day to day activities: “Puzzles, putting photo albums together, gardening, house chores as long as she is physically able, sewing, walking/running- any kind of physical activity, volunteer work in the community or at the church, visits from family and friends…speech therapy (more on this later)…” the list went on and I was so grateful.
I even received advice for the caretakers: “Take care of yourself. The caregiving to PPA/dementia is a marathon.”
I will forever be grateful for what this group prepared me for.
And so, on that particular afternoon, and after a very long hug, I got pen and paper and my mom and I put together a list. It was not easy. By now she was already struggling to understand what I was saying and having even more troubles formulating a response.
“Let’s list all the things you like to do and then every night we’ll go over that list and thats what you’ll work on the next day.”
To be honest, I knew what I wanted to put on the list, but I wanted to make sure she understood what we were doing, and more importantly, I wanted her to feel part of this, that what was decided was her decision. My uncle’s words echoed in my mind again Let her be as independent as she is able to be.
“Ok, so we have laundry, dishes, mowing the lawn, putting photo albums together, going to the grocery store…what else?” I ask
“Um…” Mom’s voice was tentative, each word chosen carefully.
“That’s a great idea. You can finish the tree skirt you had started for Adam and then make one for Tina as a wedding present.”
She even smiled.
And so for the next week, things seemed to improve. Dad and I would still let her make dinner and just discreetly supervise – careful to make her feel that she was cable of doing it on her own. Dad would wake Mom up before he went to work and make sure she got herself breakfast and reminded her of the list on the kitchen counter we had put together the night before. I started to come home to mom in the dining room instead of on the couch, working on the sewing machine and in good spirits. It may sound trivial, but a scene like this made my throat tighten with emotion.
Then one afternoon, I walk in and she is clearly stuck on a thought. She tries to tell me about her day but nothing is coming out.
Finally she says, “I need J.” You need what??
“Hm,” I say. “What is J?”
“J. I need J” I can see this going to be a productive conversation.
“Maybe spell it for me.” I hand her paper and a pen.
Mom picks up the pen. The determination in her eyes is fierce. She absolutely knows what she wants, the word just isn’t coming. I’m also relieved to see that throughout this exercise she is genuinely in good spirits. I note this and make sure to keep the tone positive and to not get frustrated. I’ve noticed this is surprisingly easier than I expected it to be. And for Dad too – we have commented on how our fuse is infinite when it comes to Mom. We know it’s not her that is getting caught up but the disease.
I looked down and watch mom spell out what she wants. She holds it up.
“J!” She exclaims.
“J!” She exclaims.
I slap my hands together and take a breath, “OK! Let’s play charades! Now, what is a different word to describe what you need?”
She thinks for a moment.
“Go. Store. J”
“Ok so you need to get something at the store that starts with a J.”
“Grocery store? Do we need Jelly?”
She shakes her head.
“What the heck else starts with a J??” I laugh.
“No, no. J.”
With her index finger, she repeatedly makes a “J” in the air and looks at me with absolute conviction. It’s as if she’s saying “Duh! J. Why are you not getting it?”
“J, right. Pretty sure we got that much established,” I say with a smile. “Can you show me something in the house that will help? Show me what you need.”
She taps her index finger repeatedly onto the paper with the J.
"No, show me something else, something in the house-- an object."
She taps her index finger repeatedly onto the paper with the J.
"No, show me something else, something in the house-- an object."
A light bulb goes off. Mom disappears down the hall and comes back holding a small square. She sets it down in front of me, grinning from ear to ear and says, “J!!!!” as she pats the square.
I look down and now a light bulb goes off in my head. It’s a square piece of fabric.
“Ohhhhhhhh….you need to go to Joann Fabrics and get more fabric for the quilts! You’re out of cloth! You need to go to “J”—to Joann Fabrics!”
You would think I had just solved the million dollar puzzle, we were that excited.
You would think I had just solved the million dollar puzzle, we were that excited.
"Ok, let’s get shoes on you, and we’ll go.”
And off to Joann Fabrics we went.
|Christina's Bridal Shower 2008 - Christina with Tree skirt Mom made her|
If you noticed in that little tale, mom said “yes” when I asked if what needed was at the grocery store. That’s the tricky part of PPA. Yes doesn’t always mean yes, and no doesn’t always mean no. So when asking someone a question, you can’t close in on it quite yet. You need to stay on your heels and be ready to change direction at any moment. At this point, anyone seeing mom on the street would not think anything wrong. And though her ability to speak for more than a few sentences was lost, if asked the right question, she could still answer simple questions, and say it with conviction. But if you asked the wrong question, or phrased it in a way she did not understand, or did not use enough visuals, her answer would still be with conviction, just maybe not the answer you wanted—even if you had asked her if pigs fly, her answer could be with complete confidence whether she said “yes” or “no.”
|Christina and Mom with the tree skirt|
But today was a success. Even PPA/FTD can’t take that away. We went to Joann Fabrics and got more than enough material for mom to finish Adam and Christina’s tree skirts. Mom gave Christina the tree skirt as a shower gift the following month.
A few months later, on Christmas day, mom gave everyone their “special” gift last, as she always did. This year, Dad had to help her pick most of them out. When she handed me mine, it was a tree skirt.
|Mom, Roth (Christina's husband), and Dad (Dan)|
|Mom and I (Betsy) Christmas 2008|
She had made one for me too and kept it a surprise.
That was Mom for you. Always giving, always thinking of others, even when she couldn’t get anything out except “J.”
Two weeks to go and over $3000 donated --Over halfway there ($5k goal)!! Wahoo!!!!
Our training is also "over the hump" and on its way “down.” With that said, today was a 12 mile run.
Dear marathoner runners reading this:
For those of us that are not marathon runners, 12 miles is still a long freakin run.
And for me, who has no sense of direction, it’s even longer. 1 mile longer, to be exact.
This is the route I had mapped out to run. Notice it is circular (ish – you need to use your imagination).
This…is the route I ended up running.
Not so circular, even with your imagination at work.
It was pretty much an out and back (except for within the park because I got a second time during my return). It’s hard to see in this image but miles 2, 3, 4, and 7 and 8, 9, 10 and most of 11 are all in Frick Park. For those of you familiar with this park know at least one fact – it’s hilly.
You know the old saying“I walked 5 miles uphill get to school and 8 miles back –also up hill; in the snow.” Ok, so no snow today (thankfully!!), but I kid you not, I have no idea how I did not end on a mountain top somewhere. The run into frick was a half mile downhill, the next 2.5 were all uphill. And somehow, I swear I’m not lying, I’m pretty confident I ran about 1/4 downhill and 3.5 uphill.
I may not be a marathon runner, but I’ll have calves of steel by the time this is all over! (and um….only eight toenails. TMI? Too much info? Yeah well, I’ve had some shoe issues. J
Switching gears – I had hoped to publish a post called “I want J” tonight. It’s a story about my mom in Fall of 2008 – while she was still physically fine but her communication skills and ability to understand/respond were deteriorating. I hope it gives you a better sense of the day to day in the early stages and maybe even makes you laugh (maybe, no promises).
But after running
that -13 miles – uphill both
ways – I need another day to finalize “I want J.”
But promise to have it up in the next 24 hours.
Also coming up:
- A beautifully written letter/eulogy by Pat Blahovec (friend and colleague of my mom).
- How mom got me out of speeding ticket
- A note from Elly – my sister-in-law whom lived with my mom and was her personal caregiver.
- Mom’s physical decline
- Time to talk science – Nanny, Mom and the genetics of our family’s FTD
- “Dreams about mom”
- Some more information on what the Bluefield Project and what your donations will contribute to.
- And a few more (that’s not a title – that’s just saying there will be a few more posts).
Even though the marathon is two weeks away, as long as you all are clicking on this page, we will be on the other side - telling mom’s story to the end. The blog has been opened over 2,400 times and in ten countries. My family and I cannot thank you all enough for sticking around, reading the posts, donating (and if you’ve been really thinking about donating but haven’t – that enticing button on the right will help ya out in a matter of 45 seconds).
Seriously though, thank you for all of your support and for sharing this with others as well. My mom spent her life always giving; I’m not sure if she knew how to be the recipient of generosity, but I know she would have tears in her eyes and a swelling heart, just as mine is thanks to all of you.
(Voice - Heidi)
I just ran 7 miles. 20 miler this past weekend, which I wasn't so sure about since I just ran the USA Rock n Roll marathon a month ago. I am feeling better than expected; strong. Running and training for the marathons have helped me a lot to control my emotions about my mom and how she fought those last days of her own marathon with FTD. Every time I want to give up I just think of how hard she fought to breathe and stay strong. It's amazing how running has been a therapy for me. It makes me feel alive again, when otherwise I feel lost knowing that I don't have my mom anymore. I sometimes, while running, pretend that she is now living inside of me and I use her strength to finish my last couple miles of a long run.
I know come May 5th, Betsy and I will have her with us.
-15 April 2013
Before getting into today’s post, we were going to update you all on the marathon training progress (another 20 miler for both Heidi and I this weekend). In light of what happened in Boston today, marathon training seems rather trivial. So instead, we want to direct our thoughts to the city of Boston and those impacted by today’s tragedy. We hope for the safety and speedy recovery for anyone harmed in the attacks, our deepest condolences to the family, friends, and witnesses to those who were not so lucky, and finally, thank you to all of those who were there to help.
Post 6 - A Glimpse into the Past - Cousins
No matter if you are 6, 16, 36, or 66 – your mom is still “Mom.” I will always find it fascinating to hear about my mom’s life before motherhood. That she had a life before motherhood. Mary Margaret was a sister to John Flanagan, a daughter to Jack and Marge, a friend and cousin to dozens. She skipped rope, collected baseball cards, helped with chores, fought with her brother, looked after her brother and so much more. She went to prom and nursing school and travelled to California with her best friend. Mom was a person, just like you and me.
Today’s post – as the title clearly suggests—takes us back to before FTD; before mom was a Mom.
Hello, my name is Marie Flanagan Majarov and I live in Winchester, VA with my husband Milan, nearby our daughter, Vicki and grandson, Jake. I am Mary Flanagan Hall’s oldest cousin -- actually, among us Flanagan cousins I am everyone’s oldest cousin! To have Mary (always Mary Margaret to me) taken from us by a devastating illness, FTD, has been one of the saddest experiences in my life.
I have seen the pain in her family through the years as I know and love Mary’s mother, my dear Aunt Margaret, and I knew well her grandmother and Uncle Steve – all also tragically afflicted with this terrible disease. At the time of Nan Marcin’s and Steve’s illness its full devastating hereditary component was far from being understood - or even imagined.
My being the oldest kid in the family has had some wonderful perks. One, when I was but a few years old, was getting to visit many places with Aunt Margaret and Uncle Jack (Mary’s mom and dad) and spend wonderful times with Mary Margaret’s grandmother, uncles, and Aunt Ann swinging on the best back porch swing ever! And oh the treats -- kiffles and poppy seed rolls and many other unbelievably yummy things made by Mary’s Nan Marcin.
I am 4 years older than Mary Margaret. She was such a beautiful little baby, and her arrival so exciting. As a little girl Mary Margaret had the most gorgeous blond hair I had ever seen. Truth be told, I was jealous of that golden hair. It wasn’t long before we were playing, fast friends – and sitting together on that Marcin swing.
When Mary was 3, we, with my brother Frank, got to stay at the Emmetsburg (PA) Inn for the wedding of our Uncle Jim and Aunt Mary Lou. The Inn was huge, amazing, and elegant; we were all sure we were in a castle and played accordingly.
There were hours and hours that we played house in the unfinished attic in Mary Margaret’s Hatboro home with its treasure trove of toys and spaces for setting up great play fantasies. I would often spend the night with her. Soon Mary’s baby brother, John, joined us. I can remember standing with Mary Margaret next to the cradle, in which at one time all of us Flanagan cousins, and our parents’ generation before us also slept, looking on at John dressed in his fancy christening suit.
|Uncle John (brother) and Mary Margaret (Mom)|
Our families were close. There were much anticipated family picnics, dinners, and vacations in a charming older Victorian home on NJ’s Long Beach Island where more cousins: Molly, Reene, Hugh & Colleen, Uncle Jim’s children, joined us. Early on we would swim in our small back yard pools, and as we grew we would spend a week each summer with our Wilson, Glah, and Moyer cousins at the Wilson’s home and lake. A special treat was an overnight visit and walking to the circus with Nan Flanagan when Mary moved to Delran, NJ.
Even washing dishes at holiday gatherings was fun because we were doing it together – and many pictures recorded Mary Margaret and I helping. The one here shows our grandmother Flanagan, me a junior in HS, our Aunt Kay, and Mary Margaret in 8th grade. Fun memories!
|L-R: Nan Flanagan, cousin Marie, Aunt Kay, and Mary Margaret (Mom) - May 1964, in Nan's kitchen, Seneca Street in Fountain Hill, Bethlehem.|
As time passed there was nursing school, college, marriage, and children. Megan & Adam, (Christina, you were on the way) and my Vicki, also enjoyed a little back yard pool at the Hall home with Mary Margaret and I chattering and enjoying our children much as our mothers did years before. Unbeknownst to us all, Primary Progressive Aphasia and Frontotemporal Dementia were not far off… more about our later years and the painful good-byes during the course of Mary’s illness in a future post.
For me, Mary Margaret’s children and these happy memories are the treasures in which she will always live and be in my heart. Please help get the word out about this life-shattering, degenerative brain disease so people will understand and support the research to find answers that can assure Mary’s children and grandchildren that they will have long full lives ahead of them, free from FTD.
(If you are reading this for the first time—this is a continuation of Post 3 and 4 – explaining the discovery of my mom’s FTD and Post 1 has an overview on what they heck we're talking about in this blog).
(Voice of daughter, Christina)
I don’t remember exact memories of the first signs of Mary’s disease. I remember her calling my husband “Toby,” pointing to a knife and asking for a fork, and skipping articles in her sentences. As a Speech Language Pathologist, I worried about TIAs (Transient Ischemic Attack)-or Mini-strokes. Something was not right; it was a scary feeling but TIAs we could handle, watch for larger strokes and react quickly. I remember encouraging mom to get to the doctor late that summer 2007.
Slowly the rest of the family began to see it too. Lots of “forgetting”—which really wasn't forgetting, but misfires in her brain. Depending on the exact area of injury, when a person with deficits or injury in his/her temporal lobe of her brain tries to speak or understand, the neurons trying to send the message to the damaged area, “reroute,” send the message to related areas. When a person with expressive language deficits cannot name, but instead names something related it’s called semantic aphasia. Thus “knife” is closely related to “butter”; Roth and Toby are both male names. So a related words may come out, but not the correct word.
Aphasia is often misunderstood as confusion; it’s not confusion, just a detour that didn’t work out so well. When a caregiver understands that Aphasia needs help with the detour, he can adjust how he interacts with her. If she is trying to tell him something, asking yes/no questions may help (to a point), or backing up and thinking about the whole picture is very useful. If a caregiver can see both sides of the situation, he can often help to redirect the person, which will make her feel more confident and successful.
Back to Mary’s story, being far from home, I was able to see and hear the changes in Mom, in different ways. She started calling less often, she didn't ask me the goings on in my life, she stopped sharing stories. When I asked questions, she often had a hard time relaying specific events, again not because of her memory, but because she couldn't attach meaning to the words I used. When I arrived home for Christmas, it was even clearer that things were going goofy. I could sense that she could tell something was awry; deep down I feared that she felt she was beginning to suffer what her uncle had suffered from, what our family believed at one time to be Alzheimer’s disease.
(Voice of Betsy) Between Jan 08 and April 08, Mom was poked and prodded…. EEG, SPECT Scan, PET Scan, MRI’s, blood tests…you name it, they did. No answers. At this time we hid the news from my mom’s parents and the rest of her family, deciding to not let them worry until we found out what was actually wrong.
And mind you – even though mom was getting worse, it was still early stages. I can remember calling home in late spring and mom being able to tell me what tests that did that day, what the heck a PET Scan was (using medical language-she was a nurse after all), and what the doctor was looking for. Some days she would talk for an hour and not skip a beat, and I would be so hopeful we are making a big deal out of nothing. I would hang up elated. And then the next day she would stand in front of the kitchen sink, staring at it; confused and saddened; knowing she needed to do something but draw a total blank on why she was standing there. (And then you could hand her the sponge and it would trigger something and she’d go at it).
With each test, the less fearful causes (menopause, mini-strokes, brain tumors, etc) were ruled out one by one. Alzheimer’s was still a possibility but it didn't seem to fit.
1. Mom was 56
2. Mom was not having memory problems. She never repeated actions or stories. She did not eat a Popsicle and ask for another one 30 seconds later or talk as if she was still in high school.
3. Finally, Mom was very aware of her speech and executive “issues.”
And so – in the Spring of 2008, I became “one of those people.” We all know the type – and we all have fallen guilty ourselves; “Those people” that spend hours upon hours on the internet playing doctor. I began diagnosing my mom, constantly on the lookout for a simple answer- an answer with a solution. Certain I would get to it before the doctors did.
Tina mentioned some aphasia thing, a condition of some dementia thing, neither of which I had ever heard of.
So, first, I called Tina back.
“What did you say Mom might have again? PP what?”
“She’s showing signs of aphasia. It may be, but hopefully not, Primary Progressive Aphasia -- PPA, it’s a form of FTD.”
So I ask Google: “What is Aphasia?”
Answer: “Aphasia is a condition that robs you of the ability to communicate. Aphasia can affect your ability to express and understand language, both verbal and written.
Aphasia typically occurs suddenly after a stroke or a head injury. But it can also come on gradually from a slowly growing brain tumor or a degenerative disease…
Once the underlying cause has been treated, the primary treatment for aphasia is speech therapy that focuses on relearning and practicing language skills and using alternative or supplementary communication methods…”
Ok, that’s doesn’t sound great but not the end of the world.
A conversation I had with Adam echo’s in my head – “If Christina is right, that’s probably the worst diagnosis Mom could get. It’s terminal and sometimes only takes a few years.”
I close my eyes and take a deep breath. I reopen them and begin typing again.
“Primary Progressive Aphasia”
I search Mayo Clinic, Wikipedia, UPMC, UPenn, aphasia.org….I reword my search over and over, searching for hopeful words and phrases and push everything else to the back of my mind. I’m looking for something to tell me things will be ok.
“…tend to worsen over time…” --tend to – but it didn’t say will worsen…
“…People with primary progressive aphasia are fighting against a condition in which they will continue to lose their ability to speak, read, write, and/or understand what they hear… In the early stages, memory, reasoning and visual perception are not affected by the disease and so individuals with PPA are able to function normally in many routine daily living activities despite the aphasia...”
Does that mean they can comprehend what is happening to them??
NY Times… “While symptoms of Alzheimer’s are readily recognized by friends and relatives but not those affected, people with P.P.A. are painfully aware of their struggle to communicate, often long before it is apparent to others.”
…People with primary progressive aphasia can become mute and may eventually lose the ability to understand written or spoken language.
But Mom is only 56….
Most people with FTD are diagnosed in their 50s and early 60s. Only about 10 percent are diagnosed after age 70. Alzheimer's, on the other hand, grows more common with increasing age. People with PPA can have a variety of different language symptoms and no two cases are exactly the same.
What is the end result?
FTD inevitably gets worse, cognitively and then physically…in advanced FTD, people typically become mute and bedbound…Studies suggest that most people with FTD survive an average of six to eight years, but survival can range from two to 20 years.
And there it was.
I can’t peel my eyes away from the last sentence, and more specifically, 2 to 20 years. Which is worse?
I read over more symptoms/treatments as the disease progresses but I am only half absorbing at this point.
“….Some patients with FTD develop Lou Gehrig's disease (also known as ALS)….incontinence….shrinking brain…Parkinson-like symptoms….inability to swallow….no treatment….no cure….”
All that was left to consider was Alzheimer’s or FrontoTemporal Dementia/PPA. April 16th, 2008 – Primary Progressive Aphasia is the preliminary diagnosis but not confirmed. A spinal tap needed to be taken to rule out Alzheimer’s. But they did not screen for the protein that was required to rule out Alzheimer’s, so my mom had to get another one in June 2008. The doctor said we would have the results in two weeks. Meanwhile, my mom’s emotional and cognitive state continued to diminish.
My company had allowed me to temporarily transfer to the Pittsburgh office for a few months, so I was back living with Ma and Pa. Mom and I would spend evenings putting together lists of “chores” for her to work on the next day – to keep her busy and focused. Each day, it seemed to be a little bit harder. I wondered how long it would be until she could not read the list anymore. Not because she couldn't see it, but because the words stopped carrying meaning. The start of the school year was just around the corner and she should be returning to work (school nurse). I think by now we all knew she was not going to be allowed to return but no one was talking about it.
When we did not hear back after a few weeks, we called the doctor’s office. Of course, it went straight to voice mail. Finally, on 11 August 2008, a letter arrived at the house.
That’s it?!? What happens next? Was I reading this correctly? Was my mom just given a terminal diagnosis through a six sentence letter? Ending, by the way, with “Thanks so much for visiting, please share the results with family. Best regards.” She doesn’t have pink eye for Christ sake!
The diagnosis was life altering but delivered with the same level of regard my mom would have toward one of her frequent kids, “go take your math test, come back after if you still have stomachache.” Oh wait, but the Doc didn’t even offer to see my mom again, so my mom showed more regard to her 5th graders faking a stomachache.
I picked up the envelop to see if there is a second page of instructions, follow up request, information on what FTD is…treatment options…anything. Of course there is nothing.
I would give the letter to my dad next, but honestly, I don’t think we ever showed my mom. Why hurt her more than she already was? For the first time in my life, our family felt truly and completely helpless and without any direction or support.
The only other thing I remember from that day is asking Mom to make her chicken stuffing casserole for dinner. God I loved that dish! And cooking made her feel useful—who knew how long it would be until she couldn’t make her renowned casserole again? – we didn’t even have a doctor anymore to wager a guess.
We were back to square one and Mom was alone…
|Mom/Mary Margaret - Summer 2006 (showing signs but hiding it from the world)|