True North Counseling, Healthy Aging Series, Louisville, KY

Alzheimer’s: The Good Enough Caregiver | Healthy Aging Series: S10 E16

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There is a manual for almost everything. Like, the “dummies” guides. You know, “Adulting for Dummies,” “Communication Skills for Dummies,” and “Parenting for Dummies.” That was one I could have used 30 years ago.

I loved being a father. I wasn’t perfect. Not even close. I used to give a book to parents called, “The Good Enough Parent.” I think I was good enough. I was there when my two sons were born. I loved bathing them, and yes, changing poopy diapers.

When I became a therapist, my sons were nine and six years old. I read a lot about parenting. Did all that book-learning help me as a parent? I think so. As an example, I learned about Grandma’s Rule. You know, “Eat your broccoli and then you get your ice cream.” I learned about penalty sentences, timeouts, consistency, parental alliances, parental control, picking your battles, and using the carrot not the stick. A Parenting manual would have helped. Everything in one book.

Alzheimer’s Dementia

I have titled season 10, “It’s all About the Engine.” It’s all about taking care of your engine, you know, your brain.  But sometimes your brain gets broken and there’s nothing you can do about it. I shudder as I think about Alzheimer’s Dementia.
I’ve been sharing some stories of people with Alzheimer’s Dementia. I’ve written about the coming storm for many of us. Now, I want to share a caregiver’s story and a manual for caregivers. I wouldn’t wish dementia, in any of its forms, on anyone. And my heart breaks for the husbands, wives, and adult children who are losing their loved ones to dementia. All I can offer you is their stories and maybe a few manuals for caregiving.

I’ve paired a couple books together, one entitled, “My Two Elaine’s,” by Martin, Schreiber, and “Dementia for Caregivers.” by Renee Phillippi. As the titles imply, this is more a story about caring for people with Alzheimer’s.

I read the story that Schreiber wrote about his wife, Elaine. Marty Schreiber was the thirty-ninth governor of Wisconsin. He and Elaine met in high school and raised four children. Side by side, they crafted a wonderful life together until in 2005, when Elaine was diagnosed with Alzheimer/s Dementia. He writes,

“My first Elaine and I shared love, hope, happiness, and dreams. As she became my Second Elaine, the dreams turned into nightmares, because I was losing her. Happiness became hopelessness. Grieving and health issues (including depression and anxiety) replaced joy.”

There is a progression of hopelessness throughout his book and here are the words and phrases that jumped out at me.

Maintaining a sense of humor.
Fragile, my constant helpmate became dependent on me.
Dreams turned into nightmares.
The most fearful time may be when they know they are losing their mind.
She was having trouble remembering.
Your partner will become someone you don’t know.
No one survives.
Your spouse is going to get worse, mentally and physically.
Chronic stress experienced by caregiver may shorten their lives.
She had lost all interest in reading, making photo albums, sleep, baking…
I was too exhausted to go…
The blame game is always underway.
The risk comes in blaming herself.
Trapped and hopeless.
I felt cheated.
We learn on our own again.
Alzheimer’s makes most people uncomfortable.
Alzheimer’s continues to squeeze the memory out of Elaine.
When you are not prepared, brace yourself for moments of frustration.
One of the most painful losses for couples affected by Alzheimer’s is not being able to really talk about the kids or grandkids.
I have received the phone call from my bewildered wife, lost while driving.
I can be considered a survivor of Alzheimer’s because it is a disease with two patients.
I began to seriously wonder how much longer I can live with my wife.
Her illness is causing her to have more than one person can handle.
She lacks awareness of all she has lost. Her independence, her memories, her future.

She is not upset by the fact that she lives in a care facility and wears an adult diaper.

Elaine Schreiber died at 82 in a memory care assisted living center. Martin and Elaine lived with Alzheimer’s for 17 years.

I hope you can feel the pain that Martin and Elaine felt throughout those 17 years.

Dementia for Caregivers, by Renee Phillippi

This is a manual that I would wish, for any family members struggling with a loved one experiencing Alzheimer’s, to have read. I do not want any of you or your loved ones to experience Alzheimer’s. 

And listen to me for a second, nobody is going to look for a manual that provides instructions on giving care to a loved one with dementia when in all likelihood neither you nor your partner or parent is going to develop Alzheimer’s Dementia. 

Just in case, you know, the worst case scenario, here’s an excellent guide or manual for caring for your loved one. Most of what you will experience is challenging behaviors. As a Behavior Analyst, I know a little bit about this. I’ve written hundreds of behavior plans to support individuals with developmental or intellectual disabilities. 

Prevention is always the best approach when working with challenging behaviors and caring for individuals with Alzheimer’s. Phillippi has provided a prevention plan, of sorts, in chapter 6. It’s good. I’ll share the main points.

First, before trying to understand your loved ones behavior you should focus on establishing a relationship of mutual trust and respect.

Second, realize that your loved one is not purposely trying to upset you. Most of the behavior reflect ways that their confused brain is trying to explain external phenomenon they struggle to understand.

Third, sometimes behaviors are caused by specific objects or people that can trigger the behaviors from your loved one. This is what I mean by antecedent interventions. Remove all the objects from their sight that remind them of an upsetting or discomforting event.

Fourth, best way to redirect someone’s intention is to engage them in activities that make them feel helpful. Keep your loved one engaged in meaningful activities.

Fifth, take care of yourself. Don’t ever forget that you’re the solid rock of the team and you must look after yourself more than ever. Phillippi gives numerous examples of ways of taking care of yourself.

Six, mentally (or actually) record what happens. Life is a constant learning experience. We don’t need to continue having the same problems. We can learn and change the environment and change the behavior. Develop a plan. Follow the plan.

Seventh ask for help when needed. Don’t be afraid to ask for help and look after your own mental health.

There is lots more in Phillippi’s book and I highly recommend it.

There are transitional moments in our lives when we make choices like marriage, having children, investing, and retirement. And there are lots and lots of books and manuals for those periods in our lives. 

I’m sure many of you have read books on those topics. 

None of us will choose Dementia. And believe it or not, in some cases vascular dementia is preventable. That’s not the case with Alzheimer’s, Lewy body Dementia, and Frontal Temporal Dementia. 

If, God forbid, you or a loved one gets diagnosed with one of these diseases, here are a couple of good books that will illumine the dark road ahead of you. 

TO READ MORE ENTRIES IN THE HEALTHY AGING SERIES, CLICK HERE.

Healthy Aging Series Season 10 Episode 15

On the Shortness of Life | Healthy Aging Series: S10 E15

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I’m sitting at my campsite in the Red River Gorge. It’s mid-spring, which means it’s going to rain all night. No worries. I’m prepared. I have a microfiber tarp that weighs about 1 pound. And of course a Marmot tent. I’ll stay dry until I head back to the trail head in the morning.
As I write this, a Great Horned Owl is calling out. I answer. One more checks in. I love it! Maybe it’s a Barred Owl. Now, there are three.

I am on a Yolo-Solo backpacking trip this weekend. Just one night. By myself. Solo.
I’m always a little apprehensive about solo trips. Nobody to talk to, teach, and cook for. And then there are the safety issues. But I have a Garman-InReach satellite communicator and I’m in great shape. Plus, there are some people nearby that I can see camping. A man and his two young sons. And the Barred Owls. But this is a Yolo-Solo backpacking trip. So I brought  with me a copy of “On the Shortness of Life,“ by Seneca, the Roman Stoic philosopher. I’ve read it before and so I’m guessing that’s why I’m here. In the gorge. By myself. Because life is short. Life is short. Or is it. Seneca writes, “Life is long enough, and it has been given in sufficient, generous measure to allow the accomplishment of the very greatest things if the whole of it is well invested.” 

Seneca had a checkered past. For most of his life he was Nero’s advisor. And then he was banished by Nero until Nero ordered him to kill himself at age 67. But during his last two years he wrote many letters and the pamphlet “On the Shortness of Life.” He was my age when he wrote this essay. How does one invest in life well? I’ll summarize his thoughts.

First, Seneca encourages us to have a guiding principle to live by. He says that many people are “plunged by the fickleness of their plans that are never ever new; some have no fix principles by which to direct their course.”
I remember the movie “City, Slickers” where Mitch Robbins, played by Billy Crystal, is having a midlife crisis. He’s financially successful, and has a wonderful family, but in distress, so he is persuaded by his friends to join them at a dude ranch. He meets a grizzly cowboy named Curley Washburn, played by Jack Palance, who sees his distress. 

Curly: Do you know what the secret of life is?
Curly: This.  <He holds up one finger>.
Mitch: Your finger?
Curly: One thing. Just one thing. You stick to that and the rest of your life don’t mean shit.
Mitch: But what is the one thing?
Curly: <Smiling> That’s what you have to find out.

I think that was what Seneca was saying. My guiding principle is the Golden Rule. I think almost every issue, and every question that you have in relationships, in work, and in business are answered by following that guiding principle. Can you have more than one guiding principle? Of course. But have one.

Second, when it comes to considering the shortness of life, Seneca tells his readers to not allow others to trespass on their lives.
OK, ask yourself, “How many have robbed you of your life when you weren’t aware that you were being robbed?

People will steal your time. You have a limited amount of energy, time, and optimism. Don’t let people steal them. Be intentional about your friendships. Refuse to be a landfill for people’s rubbish. People will dump on you all of the problems that you allow. I know this sounds harsh, but there is only so much of you to go around. Family, friends, work, social groups need you and your time, and if you fritter it away with bystanders, and those that are always needy, then you will have nothing to invest in those that count. Think about social media, and how it steals your time.

Third, Seneca encourages us to “adopt ourselves into other people’s lives, that will open us to the path of immortality, and will raise us to a height from which no one is cast down.” Find people who will help you become a better person. And then, be willing to be that person. I try to be one of those people for my wife, my sons, and my friends. As you age, it gets tough, but not impossible. Your adoptee might be younger than you, but having an adoptee in your life adds instead of detracts from it.

Four, Seneca believed that in light of the shortness of life we need to reflect on all aspects of it. “Don’t forget the past,“ he writes, “or neglect the present, or fear the future.” I love this. If people practiced this, or learned the skill of reflecting, I would mostly be out of a job. I’ll break this concept down more in an upcoming blog.

Five, practice “Serenity Now!” I’ve watched Seinfeld episode #159 where Mr. Costanza was advised by his doctor, based on his self-help relaxation tape, to say “Serenity now!” every time he gets angry, to keep his stress and blood pressure down. But of course, he yells it at the top of his lungs along with his animated hand gestures. Try it. “Serenity now!!” Not quite what Seneca wanted but he warns his readers about the stress and anxiety that come from pursuing prosperity and come from being with the crowds. In contrast to Frank Costanza, Seneca advises us to withdraw into a peaceful harbor. My peaceful harbor is the Jefferson Memorial Forest. My peaceful harbor is the high desert of Utah. My peaceful harbor is the Grand Canyon in Arizona. And it is sitting on my deck quietly, calming my mind, paying attention to the present. My peaceful harbor includes spending those quiet moments with my wife and my kitties.

Six, Seneca writes, “In this kind of life there awaits much that is good to know, the love and the practice of virtues, forgetfulness of the passions, knowledge of living and dying, and a life of deep repose.”

He advocates, humility, against pride, kindness against envy, abstinence against gluttony, chastity against lust, patience against anger, liberality against greed, and diligence against sloth
I think this is the kind of life that Seneca was encouraging his readers to engage in.

Seven and finally, Seneca encouraged his readers to enjoy the life that they have now. It seemed that there was a crowd that spent much of their life crafting an epitaph that would be on their tombstone. Some had gone so far as to have a tombstone erected with the pre-inscribed epitaph. Epitaphs that matter are the people that you have touched while you lived. Be less worried about what people think of you after you’re gone and more concerned about how people feel about you now.

I’ll be Seventy in less than two years.  I have a certain kinship with Seneca. Life is short, but long enough to accomplish what you want to do if you invest it well. 

One question I have for you is, “Are you investing your life well?” I encourage you to pick up his small pamphlet and read it. And then use it as a guide for making the most of what you have left.

TO READ MORE ENTRIES IN THE HEALTHY AGING SERIES, CLICK HERE.