by Samra Jones Bufkins
By Samra Jones Bufkins
Things have calmed down in the past few days, but at 6:15 this morning, sound asleep, I felt a presence looking down on me.
Bill was standing next to the bed with a scowl on his face.
Pointing his finger he demanded “What are you doing?”
Softly, I said “Sleeping. It’s 6:15 in the morning.”
“Bullshit!” he exclaimed, walking toward the door. He turned on the overhead light, came back toward the bed and struggled to say “You need to come to the kitchen and we need to make some food.”
Still too groggy to process, I said “You’re pretty good at that. Please, let’s sleep some more. It’s too early to get up.”
We hadn’t had our ritual “kitty time,” when the cats snuggle and purr with us before we get up. I wasn’t ready to sacrifice that on a chilly morning before dawn.
I closed my eyes, and soon felt insistent tapping on my shoulder.
“You’re lazy!” he yelled.
Heading out into the hall, he turned on all the lights in his path.
I rolled over, pulled the covers over my head, and closed my eyes.
A few minutes later he came back in, a sullen expression on his face, turned on the bedside lamp on my side of the bed, then silently crawled into bed on his side, with his shoes on (he puts on shoes for even a short trip to the toilet). By now I had the blanket pulled over my face.
A minute or two later our ginger brothers, Garfield and Gonzo, were smothering me with kitty kisses. Their (unrelated) sidekick Gizmo joined us.
Bill petted all three boys and said “cute kitties” as the purring reached a gentle roar. Snuggling Gizmo close, he settled down in our cozy bed.
He’s sound asleep now.
And of course, I’m wide awake.
January 30, 2018
TMI Alert: This one doesn’t sugarcoat anything.
For the third January in a row, we’ve been to the ER. This time, hubby was admitted for pneumonia on January 2. Ten days later he was moved to a skilled nursing rehab facility to work on regaining strength and balance. That was 2 weeks of stress, because he was disoriented, and someone had to be with him most of the time. Early on, he wandered into other rooms, used a trash can for a toilet, and was generally hard to deal with in a facility where almost none of the patients are ambulatory. Still, to their credit, they were kind, helpful and tolerant. Everyone remarked about his sweet personality. He made great progress there.
After two weeks in rehab, I brought him home on Friday, January 26.
The last 4 days have been Hell on Earth. He is almost constantly confused and disoriented. I was hoping the confusion was due to another change of scenery. He was disoriented in the hospital at first, then that improved. At the rehab place the first few days were the worst, then he improved. I was under the impression that would be the pattern at home, but it’s not.
He’s also had several loud, profane, verbal outbursts, usually directed at me, including throwing things, followed by an immediate 180 degree turnaround to old, sweet Bill.
He’s had intermittent nighttime incontinence for the last 4 or 5 months, but it hasn’t been difficult to manage. I’ve got all the pads, pants, liners, waterproof mattress pads and “special underwear,” but I’ve had to strip the bed and do laundry every morning since he got home Friday.
He gets up in the night (I’m a very sound sleeper, so don’t usually know), changes clothes multiple times or puts on layers (sometimes inside out), strews Depends (fresh and used) all over the place, and worse. My morning routine now consists of donning a pair of rubber gloves and finding all the clothes that are wet and scattered to and fro, searching out stuff tucked into bookshelves and hanging on doorknobs or vacuum cleaners, etc., stripping the bed, and doing laundry, followed by mopping. I don’t remember signing up for this.
All before my morning coffee.
As I write this he’s sitting in the living room wearing his Christmas sweater over his college sweatshirt, a pair of sweatpants, and a pair of Depends on the outside, like a geriatric version of Super Man. If I suggest he change, I get cussed out.
I’m learning to pick my battles.
The two-faced *itch who once suggested I don’t need respite care because I have (had at that time) my job needs to live my life for 24 hours. I find myself hoping she has to deal with this someday, but even so, she’s rich and will probably be able to hire people. Still….
I’ve mopped three bathrooms and unclogged one toilet today and done two loads of laundry I hadn’t planned on doing. It’s worse than potty training twins, or maybe quadruplets.
At least there’s a pattern. If I see him coming out of the bathroom with pants or sweats on inside out, I check to see if he’s wearing underwear (usually not), then take him back in to get everything situated. If I’m lucky I don’t get yelled at or challenged.
“What am I supposed to do?” is a common plea whenever I ask him to remove an item of clothing, either for a shower or to get the bottom half presentable again.
Don’t suggest I hire somebody to help. I can’t afford it, and Medicare won’t pay for it. Besides, it’s almost to the point I need 24-hour help.
Ted, our friend from church who helps out (he started as a companion, but he now mops up pee and shit), is already on the track toward sainthood. I keep wondering when he’ll decide he’s had enough. I know I have, but I don’t have the option to leave.
The State of Texas has nothing to offer. Oh, they have a bit, but you have to be practically living on a park bench to qualify. Right now, that’s an attractive option.
I don’t know who my husband is anymore. I don’t recognize this man, my husband of 35.5 years, my soulmate. I’m a virtual widow caring for a shell of a man who vaguely resembles the brilliant, funny, strong and kind person I fell in love with a lifetime ago.
I’ve had to give up most of my freelance writing, which doesn’t help our financial situation one bit–but I’m hoping things will fall into enough of a routine that I can start working from home again soon.
He’s also healthier than I am. Other than his Alzheimer’s meds, he doesn’t have any issues like heart disease or other chronic ills that weaken the body.
I’ve totally lost my identity. I don’t know who I am, either. And I’m wondering how much longer I can take this.
Sorry if I’ve ruined your day, but I figured it was time to get real about this. Too many people whitewash the ugly truth.
Alzheimer’s sucks. If you’re the patient, you must feel trapped inside a mental prison with no way to communicate frustrations or needs. If you’re the family caregiver, you’re stuck between a rock and a hard place, fighting for survival while praying for a way to escape.
Fearing our worst fear
By Samra Jones Bufkins
For some unknown reason, I became deathly sick to my stomach last night. Because of the timing, I’m blaming it on the 9th inning implosion of the Houston Astros in Game 4 of the World Series, but I digress…
During one of my trips to pay homage to the porcelain god, the thought crossed my mind: “What if this is serious and I need to go to the hospital?”
It’s possibly the most-reported fear of family caregivers–what if something happens to us?
I might as well be alone in the house. Bill can’t use the telephone anymore, and I’m not sure he’d know to go to a neighbor for help. Plus, I’m wondering if it’s food poisoning or a virus (we ate from the same pot of chili) or something he could get.
We caregivers can’t get a break. We can’t even get sick without worrying about a zillion things.
But then something comforting happened.
I was curled up in a fetal position on the bed, and Bill came in with a cat. He brought the kitty to me, put him down, and stroked my hair, not saying anything.
A couple minutes later he came into the room with a glass of ice water.
After my last trip to the Temple of Earl, Bill was waiting with a washcloth soaked in cold water. A box of Kleenex was on the bed.
I crawled into bed, groaning, and he turned off the bedside light, something he NEVER does.
About 2:45 am I got up to get some ginger ale out of the kitchen. He had turned off most of the lights and turned off the TV before coming to bed. I can’t remember when he did either of those things.
Somewhere, in the remains of his intelligent, funny and compassionate brain, there was still a spark of concern, of the ability to lend assistance, and to care.
It was a brief but welcome flashback to the guy I married.
My house or our house?
By Samra Jones Bufkins
I’m not completely sure if he knows who I am, and that fluctuates from day to day. More than once he’s referred to me as “the woman who lives here.” Friends always make a point of saying “your wife, Samra…” whenever possible.
At the suggestion of a friend, I’ve posted a few reminders around the house. Most of the time, though, I’m pretty sure, to him at least, we’re just roommates. Sometimes I’m that witch who makes him eat, shower, change clothes, and do other stuff he doesn’t want to do. He usually knows my name, although he never calls me by name–he’ll say my name if asked who I am.
Early this morning, while I was listening to the news and reading, Bill got up, came to my side of the bed, and stood, hands on hips, with a strange look on his face. I asked “what’s up?” He said “Aren’t you going to show me the rest of your house?”
For some reason, I didn’t freak out, cry or say anything about this latest memory loss. Even a few months ago my natural inclination would be to say “Are you kidding? We’ve lived here ten years. Your parents lived here for 30 years before that.” For once I didn’t do that. Miraculously, I responded largely the way the Alzheimer’s Association recommends:
- Stay calm
- Respond with a brief explanation
- Show reminders
- Time travel to where they are
- Suggest rather than correct
- Don’t take it personally
- Share the experience with others.
I said “Okay, let me get my shoes on.” I gave him a tour. Showed him each room, closets, light switches and key features of the house and backyard.
He was impressed. He thought it was cool that we have 3 bathrooms and a pool. The big sunroom overlooking the pool was “beautiful” (actually, it’s a mess). He loved the kitchen. The French Door refrigerator fascinated him. He thought the ceiling fans were neat and the sofas comfortable.
When I was done he said “Thank you” and we went on with our morning as if nothing unusual had happened.
Just another day in Alzheimer’s World.
His parents bought this house in 1979. We have lived here since July 2007.
by Samra Jones Bufkins
I’m going to start “Caregiver Logs” (inspired by Star Trek’s Captain’s Log) as part of this blog, describing incidents and behaviors we experience. For the first few posts I’ll be going back in recent time.
I’ll venture into the TMI zone here, because people need to know that hostility, agitation and aggression are very common aspects of dementia. Most of the time, however, my hubby is his usual sweet self. But then, there are those unexplainable times, like this one.
We’ve had a frustrating toilet clog (I think he put a night light in the toilet) that I was going to work on in the morning. Last night about 10:30 I gave hubby his night pills. Then he went toward the master bath and I said “it’s stopped up, please use the other one.” He said “ok, thanks.”
After he’d been gone forever, I went looking for him. The round trash can from the living room was in the foyer and the door was not closed and latched–somehow I didn’t hear the little alarm when it opened, either. I looked for Bill and found him in the kitchen. He had taken his red t-shirt (which he had put on OVER the orange flannel shirt he was wearing) off and put on a blue one from the laundry room. As usual, all the lights were on, including in my office.
I took him back to the bedroom and went to use the other bathroom. When I returned he had messed up the covers really bad and was laying on top of them. When I suggested he’d be more comfortable under the covers, the got THAT LOOK on his face and yelled, as if it was my fault, “I HAVE TO PEE!!!”
I said to use the other bathroom because this one is stopped up, and he said “ok.”
He returned a few minutes later and I went out to turn off all the lights AGAIN (note to self–get more Alexa-operated switches.) I came back into the bedroom and he was not in bed–he was just sitting on the broken toilet. (I was only gone a few seconds.)
I yelled “NOOOOOO!” and told him AGAIN that toilet does not work and he said “ok,” and pulled up his pants.
“What am I supposed to do?” he cried plaintively.
I said “use the other bathroom.” He screamed “I DON’T KNOW WHERE THAT IS.” (It’s the one he uses the most, because it’s closest to both the living room and kitchen.)
I took him by the hand to lead him to it and he resisted, pulling back. I finally got him into the living room and was heading toward the powder room when he jerked my arm and said “F*** YOU, B****!”
I couldn’t say anything, so I started to try to lead him again, and he grabbed both of my arms, and screamed “I WANT TO GO TO BED, B****!” Somehow I remained calm and said “I brought you out here because you said you needed to pee. Do you need to pee?” He said “yes” so I led him toward that bathroom again.
After he came back to bed, I went out to turn all the lights off AGAIN. I was gone maybe 15 seconds. When I returned, He was headed for the toilet in the master bath. Once again, I took him to the other one. This time I waited in the living room, then when he came back, I turned off all the lights again and checked the toilet. I saw no evidence he used it. The water was clear and the tank was not refilling (he usually doesn’t flush, anyway.)
When I came back into the bedroom, he had kicked the covers off again. I asked him why, and he yelled “IT’S HOT IN HERE.” It’s the same nighttime thermostat setting I’ve had for months, and he’s usually cold.
I got in bed, finished watching Colbert, and fell asleep with a purring kitty by my side.
At 3 am I was awakened by Bill rummaging in the closet. I asked what he was doing, and he said he needed some clothes. I got up, showed him where his pajamas were, but he didn’t want them. He wanted his jeans and another flannel shirt. Because I wanted to go back to sleep, I let him put them on and go to bed.
I still haven’t found the pajama bottoms and flannel shirt he wore to bed–probably wadded up and stuffed into a bookcase. Yes, hiding clothes is a thing now, too.
At 5:30 am he woke up and was wandering around the room. I turned the light on and the jeans were now inside-out. I asked him why he was awake and he shrugged. I told him we needed to sleep more, and he came back to bed.
Getting him spiffed up to go anywhere is tough, but that morning he had a doctor’s appointment for the clinical trial he’s been accepted into. It’s for a double-blind, placebo-controlled investigative drug they HOPE will help reduce or eliminate this kind of agitation.
So do I, and I hope he gets the drug rather than the placebo.
The study is also charting caregiver reactions to these behaviors, so I get a thorough interview and assessment each time we visit. FINALLY! Somebody in the scientific/pharmaceutical community is looking out for us.
Author’s note: Agitation and confusion are often indicators of a urinary tract infection (UTI). I had already ruled this out using home test strips, which can be found in most pharmacies where home pregnancy tests are located. The strips don’t test for everything the doctor’s office tests for, but they can help you avoid unnecessary trips to the doctor or urgent care clinic.
The author has not been compensated for the mention and/or link to products cited in this blog.
by Samra Jones Bufkins
We’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.
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.
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.
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.
“…a team event to raise funds and awareness for the Alzheimer’s Association®. Held annually on the summer solstice, the duration of this sunrise-to-sunset event symbolizes the challenging journey of those living with the disease and their caregivers. Teams are encouraged to create their own experience as they fundraise and participate in an activity they love to honor someone facing the disease.”
They have a cute, catchy video designed to inspire people to form teams, participate, and most importantly, raise money. They invite people to “… have fun from sunrise to sunset…show those who are facing Alzheimer’s they are not alone.”
I get the symbolism of doing something from sunrise to sunset on the summer solstice, the longest day of the year. Designed to draw awareness to the plight of those who suffer from Alzheimer’s, the idea is admirable.
But it misses the point entirely.
As sole caregiver to a husband with younger-onset Alzheimer’s, I can tell you the “longest day” is not twelve hours of daylight–it’s more like The 36 Hour Day, and that’s 365 days, not one day a year.
While thousands of people are raising money and “awareness” bowling, singing, dancing, quilting, gardening, and otherwise having fun to “honor” a loved one, we caregivers will be doing what we always do–being agonizingly and exhaustingly aware of Alzheimer’s.
We’ll be answering the same question 21 times, helping a grown man shave and dress, looking for lost hearing aids and glasses, changing adult diapers, begging Grandma to eat her vegetables, wondering when the long-lost child, grandchild, sibling or friend will call to say “hello,” juggling meds, medical bills, and household maintenance, wondering if we’ve got enough money to make it until the next paycheck, managing our jobs, taking care of other family members and pets, and doing it all without sleep, personal care or companionship ourselves. Throw in unsolicited advice by friends, family and strangers and you’ve got the classic recipes for caregiver stress and burnout.
I’ve been a big supporter of the Alzheimer’s Association and will continue to participate in walks and other fundraisers, but frankly, I’m a little tired of the emphasis on “awareness” and the importance of fundraising. I’m ready for action. All the money raised for “research” hasn’t produced a new medication in more than 15 years, and nothing slows the progression of the disease. Alzheimer’s Disease is reaching epidemic proportions, and the organization’s own publication shows the toll it takes on caregivers, personally and financially, and that’s old news. The Shriver Report did a better job of illustrating the challenges family caregivers face–and that was in 2010. We’re not going to cure this disease in any of our lifetimes–why not help those of us caring for the very people the organization wants to help?
How about a little service for caregivers?
Yes, I know some chapters do provide respite care and other services, but not the one in my area. Caregiver training is fine, but how about taking some of that money raised and funding some free or low-cost day care or respite care that includes nights and weekends, or in-home care? Why not subsidize some respite and home care services that, right now, are out-of-pocket and not covered by Medicare, insurance, or Medicaid? (And aren’t tax-deductible, either.) How about some volunteer training for churches interested in homebound ministries? How about some stress relief on an ongoing basis?
There is a stigma attached to Alzheimer’s–it’s probably at the root of the isolation and abandonment many caregivers experience when friends and family drift away. It makes it hard to get church members and other volunteers to come sit with someone while the caregiver gets out for a few hours of necessary errands or a little recreation.
Many nonprofit and government respite programs have maximum income qualifications, and they are so low that middle-class people don’t qualify. In fact, unless you’re rich or indigent, you can’t get help most places in this country.
Make the Longest Day a Service Day
The Alzheimer’s Association could do a lot to make “The Longest Day” a relevant and life-changing event for a broad base of participants. June 20 (or the nearest Saturday) could be turned into a day of service along the lines of the Martin Luther King, Jr. National Day of Service or the National Day of Service on 9/11.
The Longest Day could become a day that takes on a new meaning, and a life of its own while bringing genuine awareness about this devastating disease. It could bring people into direct contact with those affected by the 6th leading cause of death in the United States. It could reunite families, motivate ministries and service organizations, and reduce the fear and stigma associated with the disease by exposing volunteers to the actual people they’re helping.
Instead of forming a team to garden all day to “honor” a loved one, how about fanning out in the community and doing gardening work at the homes of people with Alzheimer’s?Raise money to buy plants and mulch, and rebuild flower beds. Trim trees and shrubs. Lay down soaker hoses. Replace high-maintenance plants with native plants. Better yet, help the person with Alzheimer’s do a little work to stimulate their mind and enhance their feeling of self-worth while improving their quality of life.
Knitting and crocheting? Comfort mitts are a great way to use up leftover yarn and sewing notions. Also called Twiddle Muffs, there are literally thousands of ideas out there (knitted, crochet and sewn), and if you spend a little time getting to know the person you’re making it for, you can personalize it to their interests.
Quilting? Spend the day helping several Alzheimer’s patients make a quilt or shawl they can use at home, or make quilts, shawls, and tote bags to fit over walkers and wheelchairs, and distribute them to Alzheimer’s patients.
Home repair? Get a group together and do home repair or debris cleanup at the homes of people with Alzheimer’s–check the weather-stripping on doors and windows, insulate the attic, do a safety check and secure the home from hazards. Get an electrician to help install motion-activated light switches, which increase safety and save energy. Paint, repair, clean, build a wheelchair ramp or install grab bars. Ask what needs fixing, get the materials donated, and fix it.
Good at organizing? Help a worn out caregiver do laundry, organize closets and drawers and figure out a system that will ease his or her burden when it comes time to get the loved one bathed, groomed and dressed every day. Help sort stuff and organize things for a garage sale–and then help them publicize and run the sale.
Haul stuff to recycling or a thrift store. Change the oil in the car, check belts, hoses and fluids, rotate the tires.
Stay with an Alzheimer’s patient and let the caregiver go out and play–and while he or she is out, make dinner or do some chores around the house as well as entertain the caregiver’s loved one. If the person with Alzheimer’s is up to it, take him or her to a museum, concert, park, or a movie–a change of scenery will be welcome. Take them to the local animal shelter to walk dogs and play with adoptable pets.
Scrapbooker? Adopt an Alzheimer’s family and go through family photos, memorabilia, and other items and put together memory books using your leftover scrapbooking materials to make it pretty. While doing so, talk to the person, listen to their stories and relieve their loved one of the burden of hearing that story for the 59th time.
Raising money is great, but many of these suggestions cost little more than time. With planning, Alzheimer’s patients can be identified through caregiver support groups, social service agencies, churches and neighborhood associations, social media and inquiries via traditional news stories. A questionnaire will help personalize the day of service to each family’s needs, and background checks can be performed by most nonprofit organizations dealing with volunteers. Advance planning will also enable fundraising and securing inkind donations of supplies needed for these projects.
Everything suggested above can be done as part of The Longest Day, but most are also ongoing needs for people with Alzheimer’s and their caregivers, and should be considered whenever organizations are looking for volunteer projects throughout the year. Pushing more cities to join the Dementia Friendly America initiative, or starting a Share the Care chapter in each city is a good start, and both can partner with the Alzheimer’s Association to make a tangible difference in the lives of patients and their caregivers, most of whom probably won’t live to see a cure.
For most caregivers, every day is “The Longest Day.”
The Alzheimer’s Association won’t like my suggestion to turn what they want to be a cash cow into a workhorse, directly benefiting thousands of Alzheimer’s patients and their weary caregivers. But I’m challenging the association–and other groups–to mobilize and make “The Longest Day” a meaningful experience that makes a genuine difference in the lives of everyone involved–on the summer solstice and the rest of the year.
It’s been a while since I’ve updated the blog. A lot has happened, and I’ll get to all of it in future posts, but this CBS News story really strikes a nerve, and I can’t go to sleep without writing about it.
Quick update: Near the end of January Bill slipped or tripped and hit his head on the vent hood over the kitchen stove. While he never lost consciousness, he suffered a subdural hematoma, spent two days under observation in the ICU at Denton Regional, and suffice it to say maxed out his annual deductible and yearly out-of-pocket expenses by January 28. (An ER visit including ambulance ride, 3 CT scans and an MRI and two days in ICU will do that to you.) That saga isn’t over, but this blog post isn’t about that.
People constantly tell us caregivers how heroic we are, or how they “don’t know how [we] do it.”
We don’t know how we do it, either, and no, we’re not heroic. Heroes do what they don’t have to do. They do it out of courage and often without thought–they act on impulse. We caregivers do what we do because we have to—because nobody else will and most of us don’t have the money to pay for all we need. (And those who can pay still have to deal with the pain of seeing their loved one slip away a bit every day.)
I’ll boldly say you don’t know how we do it–because you are relieved YOU don’t HAVE to do it.
Every 66 seconds somebody in the United States is diagnosed with Alzheimer’s Disease. Throw in the many other types of dementias, and we’re dealing with an epidemic. I’d wager in a couple of years 100% of the population will either have some form of dementia or will have a family member with it. The Alzheimer’s Association just released a new study with some shocking figures.
There’s nothing heroic about being an unpaid caregiver to an Alzheimer’s patient. We’re isolated because our friends don’t ask us out any more or come over to visit; family members desert us, we’re tired all the time, scared most of the time, and angry much of the time. Those of us who still have jobs, at least have a little outside contact, but that spouse who is full time caregiver in the home probably finds the UPS guy delivering another crate of incontinence supplies the most enlightening conversation he/she has had all day.
And a lot of us are broke.
Hubby is getting to the point I can’t leave him alone as much as I used to. Oh, sure, he can heat up food in the microwave, make a salad, soup or sandwich, brew coffee in the Keurig, and do toileting, etc., independently, but he has no mental or physical stimulation. The video monitoring system I have in the main rooms of the house prove he sleeps way too much when he’s alone, or just watches TV. He’s bored, and since initiative is often one of the first things to go, he rarely engages in productive activity without prompting. That only adds to the rapidity of his cognitive decline. Years of asking people in his men’s group or other groups to schedule some time to come visit, play Monopoly with him, engage in activities at the Senior Center, go to the animal shelter and walk dogs, do ANYTHING, have fallen on deaf ears. So now I’m looking into paid caregivers, and I don’t like what I see.
Most caregiver assistance agencies in our area charge $17–$20 an hour with a 4-hour minimum and a regular schedule set in advance. That doesn’t work for an academic schedule, which can be erratic and hectic. A “quick trip” to the office often becomes a 4 hour ordeal because I must have a microchip implanted somewhere in my body that sends out a signal when I’m on campus and near my office. Needy students and needy colleagues all get a slice of my time when I’m in the building. Don’t get me wrong, I enjoy them all, but when I’m distracted by the urge to get home, not so much. And forget getting a caregiver on short notice. You think getting a baby sitter is hard? Try getting a caregiver from an agency after hours or on weekends without lots of advance scheduling.
A friend at church who volunteers for a hospice bereavement ministry identified a recent widower with the same interests as Bill’s, and this gentleman is coming over one or two nights a week when I teach an evening class. I make sure both guys are fed, either by throwing something into the crockpot or shoving a casserole into the oven, or ordering a pizza. I assume they have some meaningful conversation. It’s better than nothing, and Bill feels useful because he feels like he’s helping his new friend, as he says, “be less sad.”
I’m considering a paid caregiver one or two days a week–someone with Bill’s interests and ideas for enrichment activities that can slow Bill’s cognitive decline. But those aren’t cheap, and I’m still paying down debt run up during the years (pre-diagnosis) when Bill couldn’t hold a job and we lived off credit cards because I was working part-time. Bill has never been particularly forthcoming about our finances, and I was content with that. His parents were good with investments–mine had a checking account and a savings account. Little did I know disease was messing with his brain long ago, and that messed with our finances. I expect my retirement home (assuming I outlive Bill) will be a park bench somewhere.
Our house, with a great floor plan, gorgeous yard and pool in a wonderful neighborhood, is paid for–we inherited it from his parents, who did little more than change light bulbs for 40 years, so there’s the 1969 wallpaper and shag carpet to deal with, among other things. Theoretically, all I have are utilities, property taxes and maintenance. Still, it really hurt when a service organization–one that has helped us out with manual labor in the past, and that my husband is a dues-paying member of–responded to a recent request to schedule a project they volunteered for last year with “…consensus is you need to downsize and move to a place easier to maintain. In the meantime you’ll just have to find someone to do that work or pay somebody to do it.”
Easy enough for you to say. Are you offering to help with that downsizing sale (at which I’m lucky to get 50% of the proceeds if I hire a contractor), property cleanup and move us to a place where I’ll have a mortgage payment or rent? Then, are you willing to help with the inevitable confusion and wandering that comes with moving an Alzheimer’s patient away from his longtime home? No, you’re just giving advice to a drowning person.
Alzheimer’s does that to people who don’t live with an Alzheimer’s patient every day. Fear of the unknown takes over. It makes them uncomfortable when the person loses executive function, suffers memory loss, or starts to confabulate a story. They’re embarrassed by minor behavior aberrations.
So that discomfort leads friends and family to distance themselves, because it’s easier for them to just walk away.
But it’s not easier for the caregiver, who has no break from the routine and the drudgery. No adult conversations at dinner. No stimulation. Never a moment alone at home.
And when that stranger in a familiar body is your spouse, your soulmate, with whom you shared adventures around the world, laughed at inside jokes and received moral support from after a tough day at work, the pain is almost too great to bear. But bear it we do.
The recent Alzheimer’s Association study points out a lot of issues caregivers deal with often, if not daily. More than 15 million Americans provide unpaid care to someone with Alzheimer’s disease. If that number doesn’t impress you, this one should: 83% of assistance provided to older adults comes from family members, friends or other unpaid caregivers.
The study goes on:
“In 2015, caregivers of people with Alzheimer’s and other dementias provided an estimated 18.1 billion hours of informal (that is, unpaid) assistance, a contribution to the nation valued at $221.3 billion. This is approximately 47 percent of the net value of Walmart sales in 2014 ($473.1 billion) and eight times the total revenue of McDonald’s in 2014 ($27.4 billion). The value of informal care (not including caregivers’ out-of-pocket costs) was nearly equal to the costs of direct medical and long-term care of dementia in 2010.”
Yeah, that’s real money. And it doesn’t include our out-of-pocket expenses for security, paid assistance (not tax-deductible or covered by insurance) or additional caregiver medical expenses due to stress, injuries from lifting the person we’re caring for, and so on.
Add in the stigma attached to Alzheimer’s, and you’re looking at a ticking time bomb.
“Alzheimer’s remains the sole major cause of death in industrialized countries that lacks a disease-modifying treatment — despite billions invested in trying to find one.”