On November 30th 2011, I posted a blog entitled “Twelve Words That Describe The Best Caregivers.” Little did I realize at that time this blog posting would eventually go on to become, as of July 1st 2013, my most read, most visited and, most copied article on caregiving. My gratitude goes out to all of those curious readers and caregivers who made it so.
I prepared and wrote that piece as a synthesis of my own firsthand experiences as a caregiver along with those of my wife Penny and of several other remarkable caregivers we had contact with or had read about. It’s popularity in readership told me that folks were finding some takeaway value in maybe how to improve their own approach to the formidable challenge of caring for another with a terminal dementia disease.
It recently occurred to me that my readers might also be open to learning about those behaviors and practices of a caregiver that do not work! What are the do-nots and no-no’s of dementia caregiving to avoid?
I composed a list of eight of the most harmful and/or unproductive caregiver behaviors. To be candid, when I started as a caregiver, I fully owned perhaps half of the negative behaviors on this list. Frustration, a proverbial bloody nose and hitting that brick wall in each instance finally wised me up that a different approach was called for.
Before getting into the list of eight, one must first get a grasp on the kind of world your patient or your family member has fallen into.
Rationality, order, what makes sense, established personality traits, etc. all start to disintegrate. AD does this by killing off a few hundred thousand or so neuron cells each week. Irrevocably.
In the world of Alzheimer’s, fear, unpredictability, nightmares, anxieties and lots of frustration abound. Aside from this, your loved one, your patient, also looses their higher cognitive ability to sort out, make sense of or remotely comprehend what is going on with them. No pain, no warning signs of when something is going to no longer be there. It (that memory) is simply gone.
They have slipped into a different and alien world. Alzheimer’s World. Once a person does, they no longer own the capacity or wherewith all to step back into our ‘normal’ world.
You alone are left with the ability and choice of being able to step back and forth between your world and their world each day.
They cannot rejoin our world no matter how hard they might want to. Someday, medical science may change this. While it may be on the horizon it is not here now.
It is up to you now as the caregiver to wrap your mind around this and move forward. If you choose to stay with them as a caregiver, you must realize that there is no middle ground. It is ‘an all-in’ proposition. Affirm to yourself that you are going to to learn how to step into their realm and learn the “language, customs and practices of Alzheimer’s World.”
Now, it’s time to talk about the eight behaviors to avoid.
Correcting
A couple members of our family were great for this their interaction with others. One could never cut it as a caregiver and remains distant to this day. So be it. The other eventually was diagnosed with Alzheimer’s disease and thereafter, was them self subjected to the bee sting of others correcting him. Shoe on the other foot time.
It would happen in conversation with another person in a public forum. A family member or friend would utter an incorrect statement or mispronounce a word or term in their presence. Sure enough, Bob or Suzie would react with a remark correcting the unintentional offender. On a good day, no one likes being corrected in a public setting. For a person afflicted with AD, it merely jacks up their stress level much higher than it already is.
If you are one of these types that likes to or has a history of correcting others around you, I pose this question to you. What the hell does it really matter? Especially so with someone who is cognitively compromised? It is not going to be the first time you hear mispronunciations or misstated facts out of their mouths. In the long run, you are going to hear a lot more of these kinds of mistakes. They cannot be helped. Let go of the need to be in control or known as the biggest smarty-pants!
Belittling/Embarrassing
An example of this of this might be:
“Mom, why in the hell did you cram our checkbook and all of our bank statements into the refrigerator vegetable crisper? What were you thinking?”
All this will do is set off hurt, humiliation and anger in the poor soul. For starters, they most likely already forgot about their ‘rearrangement action’ earlier in the day and won’t connect your accusation to something that they did.
Another example goes like this:
A husband responds to cries for help or a screech from his wife in another part of their house. He enters their bedroom to witness his wife with both of her arms and head twisted up and partially covered with a garment that looks like a brassiere. She is upset, sobbing and trapped within and needs help getting herself extricated.
The husband blurts out with: “How in the hell did you wind up like this?”
Guess what? Her best, most valiant efforts' at helping herself get dressed went awry. Remember once again, she is no longer completely in our rational world anymore. Putting on such a garment as this which would be tricky for menfolk were they compelled to wear one as part of their attire.
Patience and compassion is called for here, not crushing her fragile ego and making matters worse.
Lecturing or Telling Someone Off
Their exists a substantial number of folks in our society who subscribe to the notion that telling someone off or “putting them in their place,” is an appropriate behavior to pull the trigger on. It rarely works with someone who is otherwise rational and possesses all of their cognitive skills.
It does not work at all with an AD afflicted person. Suddenly, you are in their face yelling at them or scolding them with a pointed finger about something they can neither comprehend nor remember. Up goes the anger and frustration gauge needle for them. Maybe a curse word or phrase comes your way next. Now an argument breaks out. The price paid for your negative ego thrill of telling that person off accomplishes nothing positive.
Let go of this ego centered need (on your part) to tell your patient or family member off.
Frightening or Startling
I learned early on with both my own deceased mother and mother-in-law (bless them both) about approaching them too quickly or without warning. The startle reaction with AD folks is much more pronounced and deeply felt than for you or I. Probably because so much of what is happening in their world already is frightening and doesn’t make sense anymore.
I learned to enter the room or into their presence slowly. Give them time to take you into their range of view at their own pace. We forget that we will often appear to them as a stranger, or, as AD progresses, as perhaps a person but with features altered that might remind them of that Zombie movie that scared the dickens out of them when they were a child.
Most of us do not realize that the simple act of recalling who somebody is by just looking at them is a complex process. Our brain stores the memories of a person in basically four different file cabinets. Not all in one. Facial feature memory is in cabinet number one. The name associated with that face is stored in cabinet number two. The unique sound of that person’s voice is stored in file cabinet number three. Finally, the smell or scent of that person, is stored in file cabinet number four. The recognition process requires acccessing and integrating the memories from all of these file cabinets in order for it to be successful.
With AD, the part of the brain that recalls and puts all of these memories together, (the hippocampus) is under attack or already compromised. Imagine your AD brain, in a damaged state, trying to integrate the memory of your voice, with the face of your loved one's sister, matched to the name of a college roommate, and coupled up with the scent or smell of a chipmunk pet from childhood! It all may very well wind up scrambled up just like that. How would you come to make sense of all of that?
Take your time when approaching. Give your loved one time to take you in and get used to your presence. When and if you do speak, do so softly, slowly and clearly.
Impatience
This one was one of my own worst behaviors. I held little tolerance for those slower than I, less organized or those who chose to sleep in on some mornings. For me, it was all about getting up early every day, having a game plan established and attacking that plan to completion.
None of these expectations worked well with my introduction to AD caregiving. It drove me nuts. It caused heartburn and frustration. It made me want to throw or break things (thankfully I did not). A defining moment arose for me: change the way I was doing things cause what I was doing wasn’t working for ----!
I slowly learned to overcome these unachievable expectations by telling myself: “They don’t know how to work like I expect them to anymore. It’s not their fault. I am now their to act as their cheerleader, their advocate. Give them a chance...give them a break.”
Stage Managing/Scripting
If you are one of the many millions of Baby Boomer caregivers out there for a parent or two, then you know how limited your blocks of time can be. Whether paying a visit to the folks’ house to check on them, take one to the doctors, assist them on an errand or accompany them to the bank: it all takes up time that you must allow for.
My experience taught me this:
It’s OK to plan for a specific activity on the way to, say dad’s place, but once there, be ready to adapt and improvise. You just never know what you are going to run into.
Many a time, I’d burn a day off devoted to taking the folks (they both had the same Medicare primary physician) to their doctor for checkups. The trip to their physician took about thirty minutes. So I’d arrive at their place an hour ahead of their scheduled appointment time. This allowed a half hour to make sure they were dressed, had taken their medications and were ready (bathroom visits for both out of the way). Often as not, one would have eaten and was dressing while the other was still in bed with neither having taken their morning medications or shots. Plus, for one of the parents, indecision would arise as to what outfit were they going to choose and wear.
The lessons:
Make your plan but plan for contingencies: every time. And also: show up 2 hours earlier than you need to make sure they are moving along with their morning routines. Lastly, have in mind one or two outfits or ensembles in mind and ready to produce to make the issue of selection more simplified.
When it comes to choosing the clothing, I learned a persuasive technique that helped such as:
Me: “Last time, Mom, you picked the tan slacks and top because you said it was your most comfortable casual outfit.”
Mom: “Oh, I did, well...OK then, let’s go with the tan outfit.”
Obsessive punctuality
Time is valuable; time is money. The meter is running man. That was once my mantra. Being punctual was being productive and efficient. In my world view, that was the natural order of things both in my personal and business life.
Not so when it came to working with dementia diagnosed parents. Not their fault.
At one time, when both were healthy years ago, one was very punctual. Even arriving early at their commitments. The other, well, the other was always a procrastinator. Dementia sneaked into the lives of both. The punctual one became lethargic and lost track of time. The procrastinator then began to set new world records for procrastination. Not a choice deal for either. Consequences of the disease that had claimed them.
Again, my adaptive choice to make here was to show up early and allow for two or three times what I thought it would normally take to handle their business, their errand, their care on that day.
This one was a hard one for me to let go of and it took nearly a year for me to make the adaptation. 25 mph. was my new 65 mph. Forward motion was better than no motion at all.
Inflexibility
Learn to have an alternative route to getting done what you want. There will be days when your family member or patient will not be agreeable to what you want done, even showing defiance or belligerence. NO to sitting down for lunch, NO to taking their pills, NO to going to bed, etc.
The solution to this is what I call pivoting or what dementia caregiving experts call “redirecting.” You change the subject or change the direction of what you are doing to break the focus of what they are resistant to. It creates a mental disruption or disconnect for them by the introduction of something new that you offer or show them.
Example:
You: “Dad, it’s time to get up out of your chair, put that book down, and get in the car so we can go to the bank.”
Dad: “No, (Defiantly) I’m not done with the book yet. When I’m done, we’ll go.”
You: “OK, (Cheerfully) that’s fine. But say dad, have you seen the new seat covers that I installed in my car?”
Dad: “No, (Surprised) I don’t think I have.”
You: “Wanna go take a quick peek?”
Dad: “Oh, (Curiosity aroused) I guess I could.”
In this instance, after showing them the seat covers, you invite them to have a seat on one as you prepare to leave and go to that bank appointment. You broke their focus of defiance with something new that actually steered them out to the car which is where you wanted them to go in the first place.
Another example involved my own mom. As she slide deeper under the influence of Alzheimer’s but while she was still living at home, she hated to bathe or shower. She would not let dad near her to assist in this chore. To hell with personal grooming.
Our solution (between Penny and I) was to hold out the promise of a warm robe and an amateur pedicure after the bath. That one always met with cooperation.
As a sixty something Baby Boomer, I never imagined myself providing pedicures someday to an eighty four year old mother. Guess what? You step up and do what you gotta do!
You can insist on being rigid, being inflexible in the plan of action you have for your loved one. The chances are excellent that it will lead to a stalemate or angry standoff. Rock against rock. Lots of chaffing , heat and sparks but no movement.
In making the choice to walk down the path of a caregiver, there are many changes that you will be faced with that you have to make. It is called adaptation. Your loved one has been kidnapped by a disease that has every malevolent intention of rubbing out every one of their memories and most all of the personality that once made them unique and cherished. Like it or not, someone has to step up and be their lifeguard, their chaperone and travel between our world and theirs.
Affirm that you are going to be the one that chooses to walk a part of each day in Alzheimer’s World and the other part of the day in our world.
My wife and I are over nine years into it at our end and still have two remaining parents to be mindful of. The rewards and transformational blessings we have experienced on the journey have been worth it all.
Jeff Dodson
July 1st 2013
