By the ‘Goode Grace of God’ I’ve had almost 6 good days. Many of you know what I mean if you have FTD. Here’s what my prior good days before the symptoms looked like:
- got new accounts, and we celebrated
- rekindled relationships with customers
- did a presentation that brought Catholics back
- taught great people to use technology for ministry and how to respect the intimacy that technology portends
- wrote dozens of marketing plans – or –
- wrote dozens of evangelization ideas
- wrote about the Dignity of Life
- defended the Catholic faith
The few good days I’ve had now are:
- didn’t have to take a nap
- participated in a forum chat on Tues & Fri
- bright when I look at my electric cart
- can plow farms and cook on Cafe World, Facebook
- can make a sandwich
- clean the toilet
Notice a slight change. I did too. In July it will be my 1 year anniversary of my diagnosis of Frontal Temporal Dementia, FTD. Put your hands like you wanted to cover your temples and ears. Then put your hands on the top of your head. Now, picture those spaces deteriorating for no apparent reason.
Recall that from the date of your diagnosis (DX) you have from then to 3 years when your cognizant life ends. But your body – your shell – might continue for years… What do you feel? What would you do in a deformed body, in a mind and behaviour that was never you, being fed by hand or a tube, with your family – loving you, but each time they visit, your mind knows them, but you cannot speak or indicate you know who they are … and then your world closes up and you refuse to open your eyes. You need to feel safe and they suddenly frighten you.
And you can hear your family ask how you’ve been. The nurse, overworked, underpaid but kind, gives them some positive feedback. “She’s doing good today. I think she knew who I was. She ate a little custard, spit out the broccoli, but enjoyed the bread. And when I told her you all were coming, I think she perked up a little.” Which we all know is a lie, but I can’t tell you that. I blink repeatedly. One of you says “does she blink often like that?” and the nurse says “yes, but it’s just a reflex when her eyes are dry. Doesn’t mean anything. But I told you that when I read your letters, I think she knew it was from you.”
Liar, she didn’t read anything from you to me. I do know you, always will, but with no speech and muscles who quiver or tremble all by themselves, you don’t know. And so you listen to her … Your gut is trying to tell you something, but you defer to her. “I work with Alzheimer’s patients all the time. Their movement or signs of recognition are just a reflex. There is nothing there that was once your mother.”
And I watch the 3 of you begin to weep, she hugs you. You kiss my cheek and tell me you love me. Then, hugging one another, whispering, you walk out together. And I pray to God, to take all of me and let me out of this FTD prison. I close my eyes, and a tear slides down my cheek. The nurse pats my shoulder, wipes the tears and says reassuringly, “Vicki. Your children were here and they love you. Now close your eyes and rest. Later I will take you down to Bingo.” And another tear rolls down my cheek.
————————-
Papa? Where are you? It’s me, Vicki (blinking hard)
2 comments
First thing is that I am praying that you find a nurse who, even though she works hard and is under payed, will not be like the ones described here. I know good and bad care is out there so how very crucial it is to find a prolife nurse/place to be cared for. I have seen first hand many a time when children go to visit parents. I’ve seen husbands visit their wives and vice versa. I’ve seen the victim of dementia respond although the family member doesn’t see it. One would have to visit every day to see these slight but ever so very real communications coming from the one trapped inside. God is with you, not to mention your angel ! 🙂
Vicki,
I do agree with this phrase, “The Future is What You Make It”. However, I truly believe that none of knows what or how long our future will ‘be’. I was diagnosed with FTD in Feb., 2007, and told that I “might be able to live pretty independenty for up to 5 yrs.” Also, to make a living will, a durable power of attorney and move where my daughter lives, since she’d be my caregiver. As of Sept, 2008, a new neurologist informed me I do have moderate atrophy of the frontal/temporal regions, but don’t have FTD, but MCI (mild cognative impairment). What?
That was almost as hard to accept as the original diagnosis. He based it upon the observations of my family. Of course, they’ve been a little busy with new twins (born in 2008). I do notice that I have mostly language symptoms, and some ‘off days’,but as the first doctor pointed out, I’ve learned to compensate for them.
So, my philosophy is: enjoy each day to the fullest that you are able to and show loved ones how special/loved they are. Afterall, something is going to ‘get’ us all in the end. As a friend told me after my diagnosis:
“don’t let the diagnosis get you before the disease does.” Blessings, Sharon