Another day has come, and I want to continue the discussion about denial, which is currently having a significant impact on some individuals in my own family whom I dearly love.
In exploring caregiving websites, I came across the following: Caregiving Made Easy http://www.caregivingmadeeasy.com See also: https://caregivingmadeeasy.blogspot.com/2010/07/welcome-to-care-giving-made-easy.html
It looks like a really good website, but I am stuck on its name. It’s a pet peeve of mine when I hear the message, “Just follow these steps and caregiving will be easy.” Education certainly helps, but when caregivers are told that following good advice will make it easy, it elicits a sense of failure when it is not. Even experts who find themselves in the role of caregiver find that caregiving is never easy.
As a matter of fact, being an expert can even create additional frustration. As an expert, you have high expectations of yourself. This only increases the pressure because you feel you should “know it all.”
“After all, who better to understand what was happening than I? I say this factiously, because I am a palliative/hospice nurse and a former director of nursing for an assisted-living community with a dementia unit. However, none of that helped me deal with the reality of my mother’s condition. I soon learned how inept I really was at managing her care. The result was that it took a crisis for me to be able to step in and take charge of moving my mom to a safer and more manageable environment.”What to Do about Mama? June’s Story, page 142
In my family, there are now-senior members who are historically the experts. They are the go-to people for all questions related to medical issues and well-being. Accustomed to that role, they have not transitioned easily to accepting that they have become the folks in need. It has taken the CRISIS SITUATION to provoke them into doing what needs to be done. And despite having a very-competent next generation to help, they all need to learn how to navigate the changing of the guard—that process when parents relinquish control and children accept that their parents, who they always relied upon, are now the one one’s in need.
Here is the cold truth for my generation. We are next up at bat—not just as caregivers—but as care receivers. Most of us find that concept hard to accept, and it appears that we are in denial that the time is coming (or has arrived) for us to pass the torch.
But maybe the denial is being generated by more fundamental causes because we:
- value our independence and do not feel ready to give it up—even gradually;
- are self-conscious that it’s difficult to do things that were once easy;
- are uncomfortable with the idea that we cannot be depended upon as we once were;
- are afraid to lose our abilities to do such things that are now unsafe, such as driving or climbing ladders;
- lose once-familiar personality traits when depression makes us sad and saps our joy;
- withdraw and become socially isolated—feeling powerless that we can’t change what is happening;
- lose our core identity—our sense of self.
What to Do about Mama? isn’t a book by “experts,” but by regular people in the trenches. It may just resonate with you.
I asked on my Home Page: Did you ever have a major life experience that made you say (or even just think), “I should write a book”? Well, I did. The Caregiving Experience. I kept a journal; I saved e-mails written to family; I had a veritable glut of relevant information and experience. So, what did I do with all this stuff? I wrote What to Do about Mama? The book was released November 2013, and within a couple of years I was thinking:
- Young people don’t think they need it yet.
- Caregivers are too darn busy.
- Post-caregivers just want to “put it all behind them.”
Believe me, I get it. But these attitudes are a core reason for why caregiving becomes one big viscous cycle. It usually takes a crisis to pull us out of the procrastination, avoidance, and denial mode. I want to tell you—that just ain’t no fun.
The 2nd edition of What to Do about Mama? has now been released. There’s a new chapter, The Aftermath of Caregiving, which deals with a number of these issues.
There are many steps you can take to be proactive about preparing for future caregiving needs. Many are discussed in the book. Here is just one:
- The folder has the relevant information our children (or surviving spouse) will need.
- Table of Contents: Financial (accounts, expenses, insurance, taxes and payments; Legal (information and paperwork); Property Maintenance (home and vehicles); Medical Information (insurance, medical history, wishes and preferences for end-of-life care); Other (information to access accounts, an inventory of belongings with our children’s and grandchildren’s preferences noted).
- The Conversation Project is a conversation starter, but it also contains our values, as well as our preferences for life-decisions and care. It is in the medical section.
- Our will and directives are also completed, but are in a separate file.
Denial of Caregiving:
Three articles of interest.
Daily Caregiving: 3 Ways to Deal with Family in Denial About Seniors Needing Help
According to the Mayo Clinic, “Denial is a coping mechanism that gives you time to adjust to distressing situations.”
Why would someone be in denial?
- Asking someone to change how they see your older adult threatens their whole world. That’s usually why people fall back on denial.
- It’s safe and comfortable to pretend that everything is fine and nothing is changing.
- For some, denial is a subconscious way to ignore the fact that their parent or spouse is declining. For others, it’s a way to avoid taking on caregiving responsibilities.
A Place for Mom: 13 Dangers of Caregiver Denial
Denial is a normal human emotion. No one wants to confront diseases such as Alzheimer’s for which there is currently no cure. Caregiver denial presents dangers that puts the caregiver at risk, as well as the care receiver. Elizabeth Lonseth, whose parents and parents-in-law were all diagnosed with memory impairment, is the author of “A Gradual Disappearance”. Elizabeth is up-front that it doesn’t matter how many times you’ve been through the caregiving experience—it never gets easy. But a little education helps, and the article presents some good pointers and survival tips to keep in mind.
- 7 Dangers of Denial for the Patient
- 6 Dangers of Denial for Family Members
Our Aging Parents: Are Your Elderly Parents In Denial? By Mike Gamble
This article questions whether what appears to be denial is really triggered by underlying causes, and that progress depends on understanding those causes.
- Pride — Fiercely independent, they simply don’t want to admit they can no longer do many of the things needed to live independently.
- Embarrassment — They are uncomfortably self-conscious because they can’t do things they used to do with ease.
- Ashamed — They are afraid of disappointing friends, family members and other people they admire and love because they are no longer capable of living independently.
- Fearful — They are afraid of losing their independence and/or their ability to function independently. Such as giving up driving
- Depressed — They look sad, talk less, never smile, are joyless, believe they are a burden.
- Powerless — They feel helpless — like they no longer have the power or ability to act to change their circumstances. They withdraw, become socially isolated.
- Core Identity — There’s nothing that leaves you feeling more powerless than losing your core identity.
This last list is really hitting home for me right now. I’ll save that discussion for another day.
For me, writing a book is an all-consuming process. After What to Do about Mama? was published in November 2013, I tended to refer to “my book” a lot in family conversations. My three adult children, who I encouraged to read the book, tended to tire of the topic. As my oldest daughter explained, “We don’t need it yet.”
There are four sets of grandparents in our family group. But, by the end of 2018, two of my “counterpart” grandmas had passed away. Life comes at you fast. Suddenly the kids realized they did indeed need the book. But at that point, as is typical in these situations, who had the time?
An article on caring.com, “Starting-the-conversation” discusses how to broach difficult subjects with aging parents. https://www.caring.com/caregivers/starting-the-conversation/
But how do you broach difficult subjects with your children, or maybe more
specifically, your children-in-law? My son-in-law’s (SIL) parents were both diagnosed with cancer in the span of a year. Seeing a need, and knowing that I had some useful information, I simply offered SIL a printout of The Conversation Project: https://www.theconversationproject.org/
Glancing at it, but not actually reading it, he noted language that brought
to mind difficult topics he did not want to acknowledge. In his denial, he charged me with being “insensitive” and he did not consider using the resource.
Clearly, my approach did not work well; unfortunately, it caused a shift in
our relationship; and sadly, within his family, some important information was not shared.
It is my impression that when it comes to caregiving, people often fall into
one of three categories:
- Pre-caregiving—“We don’t need it yet.”
- Current caregiving—“Who has the time?”
- Post-caregiving—“I just want to put it all behind me.”
The result? The cycle of “caregiving-in-crisis” continues.
Check out one of my previous posts on this topic: https://bgmatthewsblog.wordpress.com/2014/02/11/the-conversation-project/