Living with Dementia

I remember the time when I first noticed something was wrong with my speech. I was reading to my first grade class when I struggled with pronunciation. I even remember what book I was reading. I thought, “What is going on?” I was in training for a new job, working with teachers in Early Literacy. I was going to teach a graduate level class and visit the teachers in their classrooms. My speech was very important to my job and career. That was in 2001.

I completed my training and did not notice anything amiss until 2003. I noticed I was having slight trouble with my speech. I was teaching a graduate level class and giving staff development presentations.I am sort of an anomaly. Usually Primary Progressive Aphasia (PPA) takes just a short time to progress. Jennifer Zientz (Center for Brain Health in Dallas) gave my name and email address last year to a husband of a teacher who noticed that she was having trouble word finding at her fall “meet the teacher meeting” and she had to retire before the school year ended. He tells me she no longer communicates with him. I am lucky, I got teach my graduate class for five years. When it got too hard I took a job for one year working one on one with struggling 1st graders. I retired in May 2007. Dr.John Hart (Southwestern Medical Center) calls me “Varmint Kong”.

I had a hard time during my search for a diagnosis. I was going to an allergist. I thought it was something to do with my sinuses. Finally I went to Callier and had cognitive testing by Jennifer Zientz. She referred me to a speech therapist who said I should have a MRI. It showed that my left temporal lobe had atrophied. She also referred me to Dr. Kyle Wommack at Southwestern who diagnosed PPA.

One of my doctors wanted to talk to Mike not to me. When I told her that I was going to change jobs, she said I did not a have good judgment and my husband should make that decision for me. At that time I was teaching a graduate course. She gave me a card for art therapy and my husband a card for a caregiver’s group. I never went back to her. To be fair she probably thought that my progression was going to be faster. I was often emotional because I had to give up a job I loved. I taught successfully for one more year and then my “good judgment” said it was time to retire.

Here is what I notice

I have trouble with articulation. I have pens and paper scattered all over my house. My husband tries to understand me, but most of the time I rely on writing.

I can understand conversation but I can’t think of a reply. When I try to speak my brain is thinking about something else.

I don’t know how to end conservations; I usually just walk away. My daughter, Rachel, told me to say, “that’s all.”  Mom is used to me hanging up on her during phone calls. I usually turn the page when I am reading a book an inch before I get to the bottom of the page. Over and over again, I have to turn back to finish the page.

I can write as well as ever, except I tend to leave words out. I usually write in Microsoft Word and copy and paste into email, so the spelling and grammar check can pick up on my mistakes. I have to proofread very carefully. I’m much better on the computer and paper than I am in person.

Sometimes I can’t start talking. I know what I want to say, but I can’t get started. I stand there willing myself to speak.

I am terribly distractible. When I have speech therapy I have to face away from the door in case somebody walks by. When I talk to Mike when the TV is on, he pushes the mute button and has me face him. In church, I sit on the front row so I won’t be distracted by the people in front of me.

My face is rigid, that’s the worst part of all of this. It’s called Masked Facies. I look sad, angry or mentally challenged. Strangers come up to me and ask me if I need help. I’m independent like my Mom, so when someone tries to help me I can’t help but resent it. My eyes have a blank stare like my Dad after his stroke. I look the mirror and am horrified. I look confused, angry or sad. I wish my face was frozen in a beautiful smile but I didn’t get to choose.

My face is numb. When my nose runs or I have a nosebleed, I don’t know it until it runs onto my lips. Mike is always telling me to wipe food off my mouth. When I look down I drool. My 5-year-old grand daughter expresses it perfectly, “Disgusting!” My doctor told me that was only going to get worse.

My tongue doesn’t guide the food down my throat. I always have some food on my tongue after I eat. I have a swallowing evaluation periodically. One doctor told me I might need a feeding tube eventually.

My mouth is constantly opening and closing. Most of the time I breathe through my mouth. My handwriting is terrible and for a first grade teacher, that’s hard to accept. I have get Mike to write checks for me. I have a tremor in my hands that makes it hard to do simple tasks like wrapping presents or sewing.

I’m not nearly as confident as I used to be. I doubt myself.
I no longer trust myself to baby-sit my grandchildren by myself. That hurts!
I no longer am able to drive. It’s an insurance issue. With my diagnosis of dementia, the insurance wouldn’t have to pay.

What Helps

A whiteboard with lots of markers, pens, and paper all at hand. I’m all for “low tech”. When I write on my whiteboard everybody in the group can read as I go along, except the one thing I have to learn is don’t start out too big. I’m always running out of room! Plan ahead! It always amuses me that people who know I can hear, write back to me. A friend who is deaf wants me to learn sign language. I would, except who would I talk to? My whole family and friends are not to going to learn sign language. My one concern is my grandchildren who cannot read. I guess baby sign language would work in that relationship.

I recently got an iPad. That helps a lot. My son. Adam, who worked for Apple at that time, suggested it and got me one at a discount.

Another thing that helps is carrying cards that say: “Hello, I am Sarah Scheuermann. I have Frontal Temporal Demenyia with Apraxia which is a speech disorder that affects my oral language. It doesn’t affect my listening, reading or writing. I am uncomfortable speaking, so if you will talk I will listen. I can reply by writing. I appreciate your patience.” I carry cards with my emergency numbers I carry my purse communicator, which is a small photo album that I update frequently so when I meet somone that I haven’t seen in while it keeps me from being embarrassed and uncomfortable. I write a brief explanation with some pictures with captions that explain what is going in my life

Speech therapy with Janis Deane at Southwestern has helped me know how to practice. I notice a difference when I practice a lot. It’s hard. I have a friend, Elaine Teichman, who calls me every day and I read to her three pages of the books Janis recommended.

I have asked a group of fourteen friends to be my prayer warriors and “Steel Magnolias”. I email them when I am down and discouraged. They encourage me. I also have posted some scriptures that I read everyday to comfort me. I have posted them as well.

What doesn’t help

A picture communicator that a former speech therapist had me buy made me cry. She was thinking that the progression was going to go much faster. I wasn’t interested in saying, “I’m hungry,” or “I want to go to the store,” I wanted to say, “What do you think about ……{some news event). I’ve thought about some Alternate Communication Devices: I just couldn’t think of phrases that I say enough to program into them. It may come to that but so far my whiteboard works just fine. I also bought an iPad; that helps a lot.

Language Use

I have just in the past few months joined a new church, Arborlawn Methodist in Ft.Worth, Texas . I thought I would have trouble making new friends, but they are so friendly. I email them to get acquainted and to participate in the discussion.

When I was dealing with knowing that I was going to have to retire from the career that I loved. I started writing poems about my feelings I have at posted some of them. They’re called Song Without Words. My daughter promised my Granddaughter she would teach her to read when she had her fourth birthday. I wanted so much to help her and teach her what I had been teaching, but I knew that I wouldn’t be able to. I decided to write an Early Literacy Instruction Manual for parents who wanted to homeschool or help their child learn to read. My daughter has a blog which has 16,000 subscribers and a lot of them are stay at home moms and home schoolers, so I figured I would put it out there as a ebook for free.

Preparing for Dementia

I didn’t tell many people that this diagnosis usually leads to dementia. My children know it is a possibility, but my uncle who also had PPA, never got dementia. My mother is 92 and in chronic pain. I kept it a secret so she doesn’t have to worry and be sad. I didn’t tell my friends, because they will always be looking for signs of it. And with my face and speech they will assume that I have it and try to help. I’m terribly independent so I don’t like that. This is a new step for me admitting it.

I have my Power of Attorney so that Mike won’t have any difficulty making decisions for me. I also have my Will and Do Not Resuscitate order.

I have begun to inventory all the things I want to hand down. My son and daughter like a simple lifestyle so I don’t think they’re ready to take all my heirlooms. I am preparing a notebook of pictures of the things that are valuable, and who to leave what to.

Mike and I have all of our funeral arrangements made Mike doesn’t like nursing homes. I don’t mind them. I told my “Steel Magnolias” to gang up on Mike and convince him to put me in a nursing home and not try to take of me himself. I am independent like my mother and when someone tries to help me, I resent it. When Mike tries to help me now, without my asking him to, I get crabby. I tell him not to try to “fix me “. I’m “unfixable”. I would much rather feel crabby at someone I pay to take care of me instead of my husband or daughter.

I joined a PPA yahoo support group. It was mostly for caregivers. I remember one lady who was trying to take care of her mother who had PPA. She thought she was doing her duty, but it was overwhelming and she began to resent her mother. I couldn’t bear that. I think I would rather stay in a nursing home and visit with my family once a week. My instructions for living in a nursing home:

• Keep my hair short.
• I don’t mind sharing a room as long as I have the bed by the window, and the curtains or shade must be open so I can see out.
• Visitors once a week

Advice to family members

I have a big family and at family get togethers I began to feel invisible, so I wrote my family a letter and told them my feelings and how they could help me. Social conversation is based around questions (how’s your son Adam doing?) I told them the only questions I was comfortable answering were “How are you?” and the answer will always be “Fine, thank you” and questions that the answers were yes or no and that I signal with thumbs up or thumbs down. I told them just talk to me, tell me all their news. Don’t let me become invisible. I think that the reason nobody has heard of PPA is that when you have it you just disappear and become invisible.

Don’t help without asking first, “Would you like me to help you?”

Advice to the patient

• Plan ahead. Tell your family what you want when it comes time to decide about long term care.
• Exercise and eat healthy.
• Ask your closet friends to be your support group.
• Go out and mix with people. Don’t stay in alone and feeling sorry for yourself.

Faith in God gives me peace and grace.
Peace dwells in acceptance.