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