2013: Last week I had to go to a Ear Nose and Throat doctor about a persistent problem I have been having. At some deep level that other single parents will certainly get, I am afraid to go to the doctor. Afraid a six month sore throat will morph into Cancer or something else that will kill me before my husband dies of dementia, leaving our kids parentless. But that is a blog for another time. Today’s is about one little word. On the form.
I’ve seen it before. And I admit I have hesitated – hovered really – over it. Not sure for a moment. And then in the past, I have always checked the “Married” box. This time, much to my own amazement, I checked “Widow”. And then as an afterthought, I checked Married too.
My eyes welled up and a single tear plopped onto the form. My intention was to tell the doctor ahead of time the answer to that question they ask when you have ongoing sickness….”How’s your stress level?” they say. I never say the truth – that it is off the charts. I always lie and say I am fine.
Maybe this was my way of trying to give him the message.
Here is an account of another time – me and FTD and forms at the doctors office. It was 2009 and my husband had hurt his knee. His soon-to-be-Toxic Friends were taking him motorcycling for Thanksgiving the next week so I was worried.
David on a clear day
November 2009 Visit to Dr Ortho
With FTD in my house, I have learned to just do whatever comes next. I have learned not to look too far into the what-ifs and the how-comes.
My daughter informs me “Dad hurt himself.” She noticed him limping badly with his decades old knee brace applied to his knee. I go to him while he watches TV and ask him about it. “Bad!” he exclaims. Because I know he has refilled an outside water fountain earlier (yes, I was very surprised to see him doing it, he rarely does household jobs these days) I make a guess “Did you hurt your knee jumping over the brick wall to drain the fountain?” I say. “Yes!” (Everything is said with great enthusiasm these days.)
So I make an appointment with an Orthopedic doctor we know who has treated our family for various broken bones over the years. On appointment day I find him waiting in the driveway -it looks like he has been there for some time. We ride together in silence as is our new way – far removed from the couple who used to talk and talk and talk – always.
He has a new habit of unlatching his seatbelt as soon as I cross into any parking lot. It makes me automatically fear he will also try to get out of the car at the next moment. I go very slow in parking lots now – just in case.
He does burst from the car as I drift into a parking spot. I have a moment when I think I just ran over his foot. Instead, I find him signing in at the doctor’s front office. The receptionist has been warned by me about FTD beforehand. I see it in her face as she tries to hand me the clipboard. He grabs it and sits.
“Want some help?” I say, knowing there is no way he is going to hand it to me. At this point in FTD he is hellbent on not allowing me to help him. Like a small child…”I can do it myself mom!” He ignores me. And starts to fill it out. I open my book but I am not reading. I am watc
hing him in my peripheral vision. I am very curious. He takes a long time. I start to fidget. “Want me to finish?” I say in my nicest possible voice (I am starting to worry they are going to think we left.)
Finally I take it from him as gently as possible. “I’ll just give it back to them,” I say. I stand at the desk and look. Oh my. We have scribbles. For some reason this surprises me. And it hurts. I am momentarily shocked. He can’t write his address, let alone check any little boxes or explain his injury. I don’t even know where to start. I whisper, “What do you really need?” “Your phone number and medications he is taking. I’ll call you if I need anything” she whispers back.
I hand her some information I have brought that describes FTD. I ask her to please make sure the doctor has a moment to review it before he talks to us. I am worried about embarrassing my husband – I can see she gets that.
We wait.
At last – an exam room. The nurse comes in and asks him questions. She talks loudly and slowly. I notice this error – I wonder if he does. He can’t answer. I give him a chance. He tries. And not because he can’t hear. His form of FTD is the Semantic version. I can easily see (have for years) how the meaning of words escapes him. She looks at me. I fill her in. She leaves.
My husband immediately starts rummaging through the exam room drawers. He finds the plastic knee model. This is exactly what he would have done pre-FTD. The doctor laughs at this when he comes in.
“Frontotemporal Dementia” he says. “Fill me in.” I find myself wondering what to say. I realize later that being in a doctors office with my husband takes me straight back to the 50 or so appointments I have been to with him since we began this FTD journey – all of which he has either gone all out or at least started the diatribe about how bad and crazy and sick I am. It’s like being stabbed in the gut, over and over. I am understandably nervous about saying the wrong thing and firing the starting gun on that.
Dr Never-Prepared takes out the information I left for him and starts to read outloud from it. Then he hands it to my husband. I can’t help but be horrified.I am still trying to protect my precious husband from people who should know better.
My husband proceeds to try to tell the doctor in his halting and very limited speech that his talking is bad but everything else is just fine. “Brain good!” he says. I don’t correct him.
He says something to the doctor while making a cutting motion near his hip. “Ohhhhh, I see” says the doctor, then he turns to me: “I have no idea what he is trying to say.” It does surprise even me just how often (pretty much 100%) I know exactly what he is trying to say. So I interpret. “Honey, are you telling him you think your vasectomy caused the FTD?”
“Yes!”
And so it goes. This doctor likes to chat – I am trying to make sure we are clear on what comes next, eager to get this appointment over with before it turns into something bad. Torn meniscus he thinks. Can’t be sure without an MRI. MRI leads to surgery. Surgery is good to preserve his knee for the next “40 years”. He looks at me as he says it. I discreetly shake my head. “Or ten years.” he says. I shake my head again. “Probably surgery is not what you want at this point.” Now I shake my head in agreement.
“How do you feel about him riding a motorcycle in the desert next week?” I ask. “Absolutely not.” he says. I ask, “How do you feel about it in light of the illness?”(I know this doctor is a live-and-let-live kind of a guy.) “Ride like the wind!” he says. So I make him go over three times what must be done to keep the knee from coming unhinged for riding. The doctor wants him to wrap it tight, wear the brace and “maybe even apply some duct tape.”
He makes the mistake of saying “Well, you’ll be there to watch him and make sure, right?” He has pushed a very sensitive button without having any idea.
Not exactly. And to explain that my husband prefers his drinking buddies to his family for the holiday is just too much. I can’t. It wounds me to talk about it. And now my husband is getting that hateful look in his eye and pointing at me. The my-wife-is-poisonous diatribe is warming up. Here it comes….
I hustle us out the door. Another silent ride home.
I feel a little anger seeping in. And sadness. Anger because I get no credit. I get only grief. And sadness because this is such a long, hard road we are on. One thing after another.
That night I see he has removed the brace all together.
It makes me wonder…what will the next thing be? And then I stop myself. Whatever it is, we will just get through it.
2013: The knee ended up never being a problem. The Toxic Friends, yes. It was the last motorcycle trip though. Even they could not keep track of Dave anymore. It was a shining example of how they vilified his family for knowing he was unsafe to ride…and then realized themselves that we were right.
The Married/Widow thing? The ENT doctor didn’t notice, didn’t ask about my Stress. I think next time I will just leave that box blank.
lynnbowerdementia 
Sometimes I feel like a widow also because my husband has Alzheimer’s and can do nothing, nothing at all. There must be a new name for people like us — semi-widow or wife-widow? Who are we, where are we? I loved being his wife and I can tell you felt the same. So we shall be called “loving wife” but there’s no box to check for that one.
Oh, you could be writing this about me! We went through so many episodes like this together. Made me smile too because as stressful as those days were, I would trade them for where I am now. Without him. The first time I went to the doctor’s office after he died, I too was not sure which box to check. even though I really as now a widow. I didn’t want to check that box.
I agree with ‘starryeyestonight” there needs to be a special word for that time when they’re gone but not yet gone. “Widow-in-waiting” perhaps? “Pre-Widow”?