The somber expression on the neurologist’s face spoke volumes – correction: screamed volumes. A synopsis of Dale’s symptoms coupled with an overview of what to expect with atypical Parkinsonism (no precise diagnosis at that point) left us scratching our heads about our future.
I asked the doctor if my 69-year-old husband could still drive for a while. Mustering his best diplomacy, the doctor asked Dale, “How would you feel if a dog ran out in front of you, and you hit it? Worse, how would you feel if a little child ran out in front of you, and you couldn’t stop?”
Dale paused, trying to take in the doctor’s questions. Then, “I guess I’ll give the truck keys to Carla.”
Dale never drove again after that conversation. Neither of us talked about it for a couple of days. We went home and stared at the truck he loved, each wondering how all our times together in the truck could be history already. My late mother drove until she was 87, giving it up reluctantly when some of her children hid the car keys.
Drip-drip-drip. Another piece of Dale chiseled away. Another surreal impact on our lives. From the time a teen-aged Dale glimpsed his first muscle car and turned up the amp on a Beach Boys tune, driving became part of him. For a man, turning over the keys not only means forfeiting his independence, but also forfeiting his masculinity. Dale wasn’t ready for this.
Drip-drip-drip. The realization dawned slowly on me that I would henceforth be doing all the driving. The grocery shopping, the chauffeuring, all the quick errands like grabbing a gallon of paint at Home Depot, or picking up chlorine tablets at Leslie’s, dropping off the cleaning, making a bank deposit – all that are typically shared by a married couple based on who’s available or whose commute wound by the store. All this now fell to me, and I wasn’t ready.
Somehow, we adjust our routines to accommodate the newest loss, reinventing ourselves – again. And we mourn -- because grief comes early in progressive diseases, and takes up residence. Its unwelcome presence permeates our daily lives, and it promises to stay until long after Dale’s and my last good-bye.
Written by
CarlaL48
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The same situation with my then 63 year old husband 3 years ago. He loved driving but I knew months before that he wasn't safe, especially going round roundabouts, but then I didn't know the reason. I hated driving and rarely drove more than 3 miles from our village. In the last 3 years, like you, I have become the only driver. My first trip up the motorway to see our son 3 and a half hours away, was the worst journey I'd ever driven but now it doesn't worry me. I went and bought a sat nav though and rarely go anywhere without it. I was once told by an educational psychologist that I am directionally dyslexic when I missed an appointment with my son, even though it was taking place in a town I'd lived in for 30 years, so the sat nav is a must. The thing I miss most now though, is jumping in the car to pop to the shops whenever I need to. Now it's the mammoth task of getting my husband ready, into the wheelchair, out of the house and into the wheelchair adapted vehicle we now have. He can't be left alone as he gets up and falls. I went to collect him from the hospice day centre this afternoon and was told he was in the toilet. He was....on the floor. The nurses were surprised at my reaction, or lack of reaction. I just calmly asked him if he hurt anywhere. It happens so often, if he is out of my site, it's almost expected. As usual, he said he was fine. The bruises will come out later.
Oh, Nanna, we have so much in common besides the hubbies with PSP (in my case, that's a maybe - don't have a firm diagnosis yet). I am severely geographically challenged and need "left/right" directions - none of this "north/south, etc" stuff. I don't venture beyond a 3 mile radius from home without my nav.
I'm sure it does astound those who live in an ambulatory world that we can be so nonchalant about our husbands' falls. Of course we care, and of course we worry that one day they'll be badly hurt, but most of the time, it's minor cuts, scrapes and bruises, so we need to keep our blood pressure in check when reacting. Good on you!!
As I read your comments I think in a equally glad but disappointed way of how I am not alone.
Like my husbands driving and how it was very much a big part of his life (It was big, had plenty of grunt and is now long sold) my disinterest in driving & how I am geograpically challenged, and how nonchalent I am with my husbands falls.
With regards to the falling -
I still recall vividly (about 4 years ago) when I accosted by a 'green' physiotherapist who watched as my husband stumbled, shuffled and had a little fall whilst we visiting the hospital for a OT consult. After John's fall during our 'hospital corridor' walk I just went with the flow - checked John wasn't damaged too much and we continued on our way to the appointment.
When almost there I was stopped by the observing physiotherapist. I was duly informed to be more responsive to my husband and instructed to provide better assistance to prevent the falls. So we exchanged 'pleasantries' (Won't repeat what I really said - I am not nice with 3 hrs sleep) and John was taken on as priority patient for rehabilitive treatment!. Somehow it was falsely presumed that John's walking would be vastly improved quickly. Of course needless to say, after two consults when the physio unit became better versed with PSP I received an apology and was informed that the staff could not provide muscular rehabiliative services to improve John's walking and wished me best of luck for the future!
So I still go with the flow - after all what is, what is - because John still has the stumbles and falls. The only difference now is 'I am now 'wiser' - I've taken out additonal private health coverage with a component called 'Ambulance Plus'. So in theory if there is no equipment around, someone else gets to do the hoisting and lifting.
Regards,
Alana - Western Australia
N.B. I live in a city where 'everyone drives long distances and if you don't have a 'new' car people normally question why? So of course I am the odd one out. My car is 20 years old, and though I have been driving since I was 3 years old (amazing what a farm ute and hand brake can do!) I still get really, really bored with driving. So I always make sure I have a 'full' tank & some water & munchies on the car so when I get 'sidetracked' I have the time to find my way back home!
Please change the last line of 'on the car' to 'in the car'. Mind you - it could be rather 'cool to have a secret chocolate stash stored this way.... Regards, Alana - W.Aust.
Alana, my friend, you most certainly are not alone.
I've no doubt I wouldn't have been the least bit pleasant on 3 hours sleep. Sometimes, I'm not on 8 - just depends on the IQ and demeanor of the person I'm "conversing" with.
I agree it's amazing how fast some medical professionals write you off once they know some fundamentals of PSP. It's a hot potato they'd like to send straight to hospice.
My imagination is in overdrive right now, wondering if you should work on a small refrigeration unit (for chocolate and water) to be housed with the spare tire for emergencies. Maybe the patent office would give us a "two-fer."
I can relate as a classic car owner myself. I'd miss driving my beautiful 1954 Ford Skyliner if I had to give it up. My wife who has PSP was driving for some time after starting balance issues. I followed her home from work a few times and noticed she drifted just a bit at times. I chalked it up to being tired after a day at work and a late basketball game (Orlando Magic). A short time later she rearended another driver. Neither person hurt but damage to our car and NONE to the other car. It happened near our home and I couldn't figure out how she couldn't have stopped after a clear view of the woman waiting to turn. Later one of our cars needed service and I asked her to follow me to drop the car off at the repair shop and bring me home. Watching her in the rear mirror I noted she drifted near the edge of the road a few times. That was it, no more driving for her. My message, be very careful to watch your patient drive. Watch every move and the relationship in the lane of the road. We are fortunate her in Florida. The University will do a driving evaluation for free. Results are only reported to the individual and NOT the state or drivers license bureau. Great opprtunity for evaluation before something bad happens.
Good advice, Jimbo, to always be on the alert. I'm glad your wife wasn't hurt in the fender bender, but sorry that this wretched disease robs us, the sufferer and his/her family of so very much.
I hope you never have to give up your '54 Skyliner. If, God forbid, you ever find that you can't drive it, you can park it in your living room and charge admission - your own little Smithsonian, my friend.
I had to tell my husband when he needed to stop driving , not the nicest or easiest thing to do , but it was the right thing . I don't drive myself so it made a big difference to our way of life .
I now do my shopping on line I find other ways .
My husband wasn't aware of the fact he was veering to the centre of the road all the time . He stopped straight away , he knew I wouldn't have said if it wasn't so .
Well, there you go, cabbage, someone always has it worse. I'm so sorry that your husband can no longer drive, but from your observation, I'm sure it was the right thing.
Might I ask how you shop for groceries? Is that an online function also? Do you have some help with doctors' appointments? Just curious.
God bless you, your husband and family. You've already endured so much, my dear. I hope your son is on the mend from the flesh-eating bacteria. Please keep us posted.
Many days it's hard to "count our blessings," isn't it?
These posts touch my heart as I remember when we had to ask my Dad at stop driving at 65 years of age. And he had driven professionally before, and took so much pride in his navigation and driving skills. A couple of years later, When I asked him much later what he missed the most, he stuttered "driving", not walking without falling or speaking without exertion- driving.
This is a cruel disease and as Carla said chips away at a person (and those who love them) until that person is no longer there.
May God give you strength and patiwnce to face each day until peace prevails in the form of relief, Until then, we are here to hold each other'so hand,
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Question early symptoms 
Early diagnoses of PSP may be a blessing.
Geoff is coming home 
So the truth comes out
Symptoms that come and go?
