Tag: caregiver stress

A Tale of Two Kettles

by Samra Jones Bufkins

kettlesWe’ve all seen the ad. Grandpa can’t remember his granddaughter’s name. Grandma decides it’s time for him to take ______ drug.

While I’m tempted to turn this into a rant about both the pharmaceutical industry and the Alzheimer’s Association over-simplifying dementia by implying it’s only about memory loss, I’d rather relate a couple of experiences we’ve had with vanishing items and how I (mostly) coped.

20170822_123724Flame

This is my favorite vintage Le Creuset Dutch Oven. My mom bought it for me when I moved to Indianapolis for my first “big girl” job after college, in 1977. Cast iron with a sturdy enameled exterior and interior, this kettle has traveled from Indy to Riyadh, to four cities in Texas. A favorite for soup, chili, curry, stew, pot roasts, Cornish hens, and many other recipes over the years, it is a dependable old friend. It has some chips and gouges, and will soon be sent back to the company for repair or replacement under its lifetime warranty.

Sometime early in 2015 I made beef stew in my old pal the kettle. At that time, Bill, who was officially diagnosed with younger-onset Alzheimer’s in 2013, still helped with kitchen duty. I was also teaching a full load at a university, so it’s understandable that I got distracted and didn’t notice the kettle was never washed and put away.

Over time, I looked for it. Everywhere (I thought). Closets. Cabinets. Drawers. Storage areas. Under things. Above things. The junk room.

One large flame orange Dutch oven had just disappeared into the atmosphere.

Continue reading “A Tale of Two Kettles”

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When is a broken finger worse than brain surgery?

hand xray Feb 2

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.

Bill hand surgeryRoutine procedure, right? Splint it for four weeks, take pain pills for a few days, then back to normal. Piece of cake.

Dream on.

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.

Mistake #1.

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 kitDebrichen 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.

Ducttaped splintTed 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.

WRONG.

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.Cast application

Cast removal 1

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.do not touch 1

 

 

 

 

 

 

 

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.

shoehorn

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:meatmallet 3

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.

do not touch 2
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 thing off“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.

 Phase II

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.

Lessons Learned

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.

 

 

 

 

#MerryTwistedChristmas, Part 2 of 2

OLYMPUS DIGITAL CAMERA

By Samra Bufkins

December 27, 2015

This is a follow-up to yesterday’s blog about a little scare we had on Christmas Eve.

christmas-tree-1185455I was not surprised to read several articles the week before Christmas anticipating increased calls to Alzheimer’s help lines and organizations. There are plenty of articles preparing families, guests and caregivers for the holidays, but if somebody hasn’t seen Grandpa or Mom in a while the changes can be shocking, especially if that family member is still in denial or simply uneducated about the disease. Alzheimer’s charities in the UK expect a 60 percent rise in calls after Christmas because family members who haven’t seen their loved one in a while become alarmed at the dramatic changes they witness.

In many cases, one family member is the primary caregiver, with others providing support ranging from regular to nonexistent. I continually hear stories of adult children blaming the healthy parent or accusing him/her of ineptitude when the parent they see sporadically deteriorates. They aren’t living with the stress of caregiving 24/7. Sometimes when they visit, their parent is at his or her best, and they see nothing beyond “normal aging.”

One friend I’ll call “Sally” said their many children thought she was making things up until each one had an individual experience with their dad—an event that occurred when they were with Dad and nobody else, especially Mom, was around to influence his behavior. Once it dawned on that child there really WAS something wrong with Dad they each came around and were more supportive.

Sometimes it’s hard to remember the patient’s behavior is the disease speaking, not the person.

Alzheimer’s is not just about memory loss

Change—sudden or subtle—can indicate the progression of the disease, a change in medications, or an underlying medical condition. It should not be taken for granted. As illustrated in yesterday’s blog, language difficulties may make it difficult for Alzheimer’s patients to express symptoms.

Everybody—especially the advertising agencies promoting dementia drugs—focuses on memory loss in Alzheimer’s. Yes, it’s sad when Grandma can’t remember you, but it’s even sadder to watch your spouse hold something in his hand and have no clue what to do with it.

That happened Christmas Day at our house. Multiple times.

Continue reading “#MerryTwistedChristmas, Part 2 of 2”

#MerryTwistedChristmas, on to the new year

fanfare-trumpet-1427273(Part 1 of 2)

By Samra Bufkins

December 26, 2015

First, I hope everybody reading this has enjoyed a wonderful holiday season, whether you’re celebrating Christmas, Chanukah, Kwanzaa, or any other of the many holidays celebrated in December.

It seems like “the hap-happiest season of all” is fraught with stress for many people and for a variety of reasons—some self-inflicted, and some out of our control.

The hashtag in the title of this blog was used by my friend Mary Jane Mudd in a Facebook status update, and it inspired me. Mary Jane’s daughter Mackenzie has Tuberous Sclerosis (TSC), a rare genetic disease that causes benign tumors to grow on vital organs and often causes autism, developmental disabilities, epilepsy and more.

Her status update around midday on Christmas said it all:

MerryTwistedChristmas

 

I could have used that hashtag to describe our Christmas—and so could many of the families of the 5.3 million Americans living with Alzheimer’s Disease. Because the only predictable thing about Alzheimer’s is its unpredictability.

Background

Like many living with this disease, Bill goes through long periods of “stability,” meaning I can predict what he’s capable of doing and tailor activities for him (and tailor my expectations of those outcomes).

He wants to help. He needs to feel like he’s contributing. He handles the trash and recycling (not always well), kitty litter and feeding (they’ll tell him when that needs attention), and likes to make my morning tea, juice and breakfast. He can still make an awesome omelet, although lately some interesting ingredients have appeared. But I digress….

He’s very social, but lately he’s had trouble with grooming and dressing details. Before our recent church choir concert, one of the guys had to re-tie his tie so the skinny side didn’t hang below his belt with the wide part mid-chest.

School is out and his Wednesday Stepping Stones group isn’t meeting, so our routine is off. I notice he moves much slower than he once did, and it takes longer to do things that used to be done with ease and speed. But I’m accustomed to that.

What I’m not accustomed to is the speed at which things can change for the worst.

Continue reading “#MerryTwistedChristmas, on to the new year”

Some things just take the cake

It’s been kind of a rough row to hoe the past couple of months, with school, busted ribs, and an unfortunate situation in which we found out who our REAL friends are (still deciding whether or not to blog about that one–the wounds are still too raw).  But Bill and I have settled into a routine and things have been working out pretty well. Or so I thought.

We’re participating in a group called Stepping Stones, which meets every Wednesday and is co-facilitated by TWU Occupational Therapy graduate students and the Alzheimer’s Association.  The caregivers meet in one room while our loved ones engage in creative and physical activities down the hall. They seem to have a lot of fun, based on all the noise they make.

I wasn’t sure Bill would enjoy it, but he seems to have fun and engaging with a group of people is good for him. He’s made some arts & crafts projects that are now proudly displayed at home.

Some time before we started going to Stepping Stones I asked him if he wanted to go to the Denton Senior Center. He kind of turned up his nose and said “What would I do all day with a bunch of old people?”

I dropped the idea and started a futile search to find someone to occupy his time for a few hours a couple of days a week. My therapist had suggested getting a group of eight people together and scheduling them so that they didn’t have to commit to more than once every 6-8 weeks or so. She suggested simple things like somebody picking him up and going for coffee, a dollar movie, the dog park, or a museum, or just hang out together.  Simple enough, right?  I can usually get somebody to pick him up for Bible study and Wednesday church, but the rest was harder than I thought. I prevailed on a men’s group he’s in, and got no response.

Yes, I was frustrated. It didn’t help that I read this article about caregiver abandonment.

This past Wednesday he had a good session at Stepping Stones, then I rushed off to school. Thursday was a day of doctor’s appointments and Friday I was on campus most of the day for faculty meetings. (I’m rarely on campus on Fridays.)  I came home about 5:00 exhausted, and needing to freshen up before we went to All Saints Day Mass. Relaxing in front of the TV with a glass of cider I thought I could clear my mind a bit when Bill walked in, hands behind his back, and said “Look what I won!” He produced a cake in a box from Kroger.

How the heck did he get a cake from Kroger? He doesn’t have a driver’s license, the car keys are all locked up in the safe, and the nearest Kroger is more than 3 miles from the house.

“Oh really?” I gulped. “Won it where?”
Continue reading “Some things just take the cake”