When the broken finger belongs to somebody with Alzheimer’s Disease.
by Samra Jones Bufkins
It was a sunny morning and I was sitting at the kitchen table with a cup of tea and a cat sprawled in my lap, checking email and watching squirrels rob the bird feeder just outside the window. My husband Bill, who was diagnosed with younger-onset Alzheimer’s about 5 years ago, was suddenly standing next to me, holding out a grotesquely swollen left hand and pointing at his bent index finger.
A deep breath suppressed the brief wave of nausea that came over me. He is becoming much less verbal, but he was trying to tell me something was wrong. We didn’t need words. I examined it and he indicated it hurt when I squeezed near the joint. There was little movement and lots of swelling and bruising. (I’ll spare you the pictures to protect the squeamish.)
This was not a recent wound. It was at least 12-24 hours old. And since he has Alzheimer’s, there was no point asking him how (or when) it happened.
A trip to the ER confirmed a fracture of the proximal phalanx very close to where it joins the hand. A break like that can’t be splinted–it needed to be pinned.
The hand surgeon he was referred to a few days later had a cancellation in his surgery schedule that same afternoon, so we were soon off for the brief surgery under local anesthesia to insert two pins into the finger to hold the bone together.
Routine procedure, right? Splint it for four weeks, take pain pills for a few days, then back to normal. Piece of cake.
I remember asking about a hard cast, but they explained the area around the exposed pins was prone to infection and a soft splint was the best way to monitor the wounds. The nurse did cover the entire thing with Vetwrap, that sticky stretchy bandage they often use after you donate blood, and that requires a chain saw to remove. I figured they’re the experts, so I didn’t press for the cast.
Bill left the day surgery center in good spirits, ate a substantial dinner, took a pain pill about 6 p.m. and went to sleep on the couch with his hand in a foam contraption designed to keep it elevated. (That lasted one night and now it’s a cat toy.)
I dozed off in my recliner, but about 10 pm I woke up and noticed he wasn’t in the living room. I got up and stepped over a wad of cotton and a piece of Ace bandage on the floor. Alarmed, I followed the debris trail into the kitchen and caught him rummaging in the tool drawer. The Vetwrap was in pieces on the floor, he had cut or pulled everything off, and he was holding a pair of pliers, about to yank the pins out of his hand.
“Freak out” is not an accurate description of my reaction, but I managed to suppress it somewhat (after indulging the initial impulse to scream “WHAT ARE YOU DOING?”) and get him out of the kitchen.
I called the doctor and left an urgent message with the answering service. Then I asked Bill if his hand hurt, and when he said “yes” I gave him another pain pill.
I paced the floor, picked up bandage debris and tried to piece together enough to reconstruct the splint.
Sobbing, I called our friend Ted, who sits with Bill and lives nearby. He said “I’m coming right over.”
The doctor called back, and after I described the condition of the pins (one was bent) and the wounds, he instructed us to come to his office first thing in the morning and they’d put a hard cast on it. He said to protect the pins as much as possible–no need for an ER visit.
Ted went to the nearby 24 hour pharmacy for another elastic bandage, some sterile gauze and other supplies, and I re-bandaged Bill’s hand. For added safety I wrapped green duct tape around the bandages at easy access points, assuming that would be a deterrent to his efforts to escape this new scourge on his hand. Ted left and Bill and I went to bed. Crisis over.
Do you ever wake up in the middle of the night, jolted out of sleep but don’t know why? It was 1:45 a.m. and I suddenly realized Bill wasn’t in bed next to me. The door was open.
And there was a big wad of sterile gauze on the floor on his side of the bed.
It’s about 50 feet from the master bedroom to the kitchen in our vintage ’60s Texas ranch house, and I covered it in record time.
Bits and pieces of cotton littered the floor, and I found Bill with a butcher knife in his hand, cutting the duct tape off.
I showed him the x-rays on my phone, explained he’d had surgery and needed to wear the bandages, and put them back on.
And that was when I realized he had been ripping at the splint every four hours. The prescription bottle said “1-2 tablets every 4-6 hours for pain.”
Ripping the dressings off every 4 hours or so was his way of communicating he was in pain.
Communications and Alzheimer’s
Alzheimer’s disease progresses through the brain in a fairly predictable pattern, the results of which become visible as more parts of the brain become involved. People with Alzheimer’s and other dementias decline as the disease destroys the connections between brain cells, which eventually die, causing loss of that area’s functionality.
Speech is controlled by the left, or “dominant,” side of the brain in the frontal, temporal and parietal regions. Executive function is controlled by the frontal lobe.
Bill has been having issues with word finding for more than a year, and it’s noticeably worse. The increased damage to these parts of the brain that usually work together give us a man desperately trying to free his hand from what surely seems to be a torture device every four hours, when most of the rest of us would remember we had surgery, know that the bandage is NOT the cause of the pain, and taking a pain pill will make us feel better.
I gave him another pain pill, re-bandaged the hand, wrapped the outside of it with white surgical tape, and we went back to bed for a restless couple of hours before going to the surgeon’s office for a solid cast. Problem solved.
Um, no. Within 48 hours he was picking at the cotton padding around the thumb. Labeling the cast seemed like a good idea, but the tape didn’t last long.
Next I hid all the knives and scissors.
Then there was the morning I woke up in the wee hours, noticed he wasn’t in bed, and found a long-handled shoehorn on the floor, next to a wad of cotton.
In the kitchen I found a trail of destruction–bits of blue fiberglass intermingled with wads of cotton–leading to the butcher block island where I found this:
When I caught up with Bill in my home office the cast was still intact but had clearly seen better days.
I installed a small battery-powered alarm on the bedroom door, which woke me up every time he headed out to find another weapon to free himself from this instrument of torture. Explaining didn’t help. He has the short term memory of a gnat, and any discomfort in that hand was, in his mind, due to the cast. Since he hardly ever initiates conversation, he doesn’t say anything. The part of his brain that connects pain in his hand with asking for a pain pill no longer works. To him, the cause of the discomfort is the cast.
I apologize if this sounds like an unkind analogy, but it’s like having a pet with a medical issue requiring stitches or a bandage. They don’t understand what is causing their discomfort, so they’ll attack the one thing they know is different–in this case, the cast.
We tried using a silver fabric paint marker to remind him to stop messing with it, but that didn’t seem to register.
And all of this happened within the space of about 10 days. Bill was supposed to wear the cast for a total of four weeks. We had 3 weeks left to go.
Something drastic had to be done.
A call to his primary care physician netted a prescription for an anti-anxiety drug that also had a sedative effect. One during the day and two at bedtime, along with one or two pain pills at bedtime (depending on his agitation level) and I finally got a full night’s sleep.
As much as I hated to dope him up like that, things seemed to settle down for a while, until the morning he sat down next to me and sulked in silence. I said “What’s up?”
He looked at me solemnly, pointed defiantly at the cast, and said his first full sentence in weeks.
“I want this damn thing off my hand now!”
I sighed, grabbed my phone and pulled up the pictures of the x-rays showing the pins holding his broken finger together. I gently explained that was his hand, and he needed the cast to protect the pins while it healed. He said he understood, and he thanked me. But he didn’t seem convinced, and for the rest of the healing period, I’d see him staring at the cast with a look of defiance and determination.
If I could only know what he was thinking. If I could only get through to him.
March 1 the cast came off and the extreme medicating stopped. He immediately started occupational therapy to increase flexibility and strength, and is making progress every day. All of the therapy has a cognitive component, and we’re amassing a charming supply of wooden blocks, puzzles, Play-doh, and other “toys” to keep him occupied. But there is also a day splint, designed to help straighten the finger, that he’s supposed to wear for 10-15 minutes at a time, 5 times a day.
Five times a day we do a frantic search for the damn thing because unless somebody stares at him the whole time, he’ll get it off and stash it somewhere if you go to the bathroom, do some activity, or just blink.
The night splint is even more fun. Lightweight and simple, it’s supposed to help straighten out the finger while he sleeps. In the morning I’ve found it on the toilet tank, in the trash, under his pillow, in a shoe in his closet, and once, on a different finger on the same hand.
One of the most aggravating–and fascinating things about Alzheimer’s Disease is how clever and determined they are, and how creative they can be. He can’t remember he broke his finger and had surgery, but he can come up with 50 ways to lose the splint and constantly amazes me with the lengths to which he’ll go to get rid of it.
Surgery and illness can happen at any time. Most doctors aren’t used to dealing with dementia patients. It’s our job as caregivers to be advocates, watchdogs, and problem-solvers. It also helps if we’re clairvoyant, because if the loved one isn’t very verbal, we have to read their body language and their mind. Here are a few of my tips for dealing with situations like this:
- Trust your gut. Doctors are smart, caring people, but they also make decisions based on their experience. Our experience as caregivers is greater than theirs, and only the caregiver knows the loved one’s hot buttons and capabilities.
- Stand your ground. If you are absolutely sure your loved one will react a certain way, insist adjustments be made to overcome or accommodate that reaction. I’m pretty sure Bill’s hand surgeon will put a hard cast on any future Alzheimer’s patients (Bill was his first), but I might have avoided a lot of hassle for everyone if I’d pressed for it at the surgery center.
- Be prepared. If you think it might happen, it probably will. Take steps ahead of time (like hiding sharp objects) to head off disasters. Anticipate and prepare for the worst–if it doesn’t happen, so what? It sure beats the alternative.
- Keep notes. Documenting everything–in a notebook, with photos, or both–will help you for future reference, and will help your medical team assess the situation while coming up with solutions.
- Stock up. If you are sent home from the day surgery, hospital or doctor’s office with your loved one in a splint, cast, bandage, with stitches, etc., stop at the pharmacy and stock up on additional identical supplies because you most likely WILL need them unexpectedly.
- Get help. Ask the doctor up front to order home health and any services you think you might need. Don’t wait until you’re in a crisis. You can always cut back on services if not needed, but it takes time to get them started. Call on your church or civic club to help out watching your loved one, bringing meals and other tasks as needed.
- Don’t assume a simple procedure will remain simple. The simpler the medical issue, the more you’re on your own as a caregiver. When Bill had brain surgery for a subdural hematoma, he was in the ICU for a week and a rehab facility for a week. All his medical, physical and grooming needs were taken care of by capable professionals. Yes, brain surgery is life-threatening and stressful, but I was able to go home at night and sleep peacefully for a few hours. The broken finger was one more thing to add to the stress of working, caregiving, home and car maintenance, pet care, laundry, cleaning and life. Even though the doctor ordered a home health aide to assist with bathing, our insurance denied it because it was “just a broken finger.”
Yeah, right. “Just a broken finger” caused more anxiety, more lost sleep, and more aggravation than brain surgery.
Alzheimer’s will do that to you.