After publishing True Confessions of A Former Caregiver: And a Darn Good Cookie Recipe two weeks ago, I have continued to receive an overwhelming response that has been heart warming. It was a very personal story and though it was easy to write, it was hard to share.
Many came out of the woodwork to say how meaningful my words were to them, and talked about similar feelings, adding their own experiences equally as poignant.
As I listened to their stories, one thing became clear. It is cathartic to talk about the hard stuff. Too many people suffer and think they are alone in their experiences. Talking allows the demons to be released, and when they are released they have the potential of transforming into angels.
We all do our best in difficult circumstances but we all have limitations. The problems come when we have unrealistic expectations of what or how we think things “should be.”
Aging is as normal as being a baby, yet it is shrouded in taboo. Why is that? Perhaps it’s because on so many levels,we associate endings with loss in addition to not being mentally prepared for role reversals. Maybe instead of thinking in terms of role reversal, we need to think of role evolvement. Reversal conjures up judgment and fear because it doesn’t sound like we are progressing, but rather regressing.
Caregiving is not relegated to just the aging. Disability is no respecter of age.
According to The National Alliance of Caregivers
- 65.7 million caregivers make up 29% of the U.S. adult population providing care to someone who is ill, disabled or aged.
[The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] – Updated: November 2012
There are plenty of studies about the needs of the disabled and the dying, but what about the needs and psychology of the caregivers, and those left behind?
Rarely is the caregiver asked how they are doing, while the inquiries about those they care for go on and on. We are all in this together, yet caregivers often exist in the shadows.
To be fair, studies are emerging; but not fast enough.
Caregivers are a demographic much like parents, but different because of a lack of credibility. Don’t get me wrong; there is plenty of moral credibility, but to this point the role is not backed up with authority, or enough common practical knowledge. Decision making becomes so ambiguous. New parents, who complain children do not come with user manuals, had better buckle their seat belts when it comes time for caregiving, because they have no idea of what’s coming later in their lives.
It is time to normalize the role of caregiving and start preparing people for this stage of development. The best place to start is simply by talking about it; all of it, the good, the bad, and the ugly. As with all difficult things, emotional poison lies within the shadows.
The following are some Facebook Pages I have found that do a pretty good job of telling it like it is:
Caregiving Inspirations by Joy
The Caregiver Space
All of these pages make a valuable contribution. I wish I would’ve known about them when I was in the midst of my caregiving experience.
This week, I have launched my own contribution, by starting a Facebook Page called Caregiver’s Story Board, which will be a safe place for caregivers to share their stories.
In Muir Woods National Park, there is a designated space along the side walk for free speech. When we last visited, we overheard an exchange between a little boy and his mother. The little boy said, “Mom, can I say the ‘F’ word here?” Yanking his arm and pulling him away, his mother emphatically said, “NO!!!”
Here are the ground rules for Caregiver’s Story Board:
1. This is a family friendly page. Do not use any vulgar language.
2. This is not a therapy page. While it is a safe place to share your story, it is not a place to ask for, or expect therapeutic help.
3. If writing is not your thing, you can post videos with your story.
4. All posts are subject to my approval. If I believe a post is contrary to the mission of the page, I will delete it.
5. Posts should be in the spirit of genuine disclosure, for the purpose of: bringing caregiving out of the shadows, telling your story, normalizing the caregiver role, and education for those who are interested in or preparing to fulfill the caregiver role.
6. By posting your story, you are giving permission for it to appear on Caregiver’s Storyboard, Barbara Scoville, LCSW Blog, and other social media sites.
If this space is utilized, I believe it can make an important contribution to the understanding, acceptance, and normalization of caregiving.
I invite you to be a Pioneer of Peace and share your stories. Pass the word along that Caregiver’s Storyboard is a “safe place to land”during both the good times and the bad.
Just get on Facebook and search for Caregiver’s Storyboard. If you would PLEASE “Like” the page I would really appreciate it 🙂
That’s all for this week.
Until next time take care, and may you find your cup half full 🙂
Barbara (The Blog Whisperer)
Adult Children Caring for Parents, Aging, Aging Parents, Caregiver, Caregiver Burnout, Caregiver Manifesto, Caregiving, chocolate chip cookie recipe, Elder Care, Gourmet Chocolate Chip Cookie Recipe, Senior Care
Two years ago my mother passed away; I had been her primary caregiver for over seven years.
Like all adult children caring for their aging parents, I saw a side of my mom I had never seen as a child.
As a young person, I looked up to her. I thought she was beautiful and attempted to imitate her style. In high school, when everyone was wearing bikinis at the pool, I was wearing a one-piece black bathing suit that looked really classy (very Grace Kelly).
We shopped, people-watched, and had deep talks together. My friends loved her, and she loved them. Chocolate chip cookies were her specialty and we ate them until we popped.
Gourmet Chocolate Chip Cookie Recipe
(After all, a spoonful of sugar helps the medicine go down :-))
You will need: butter, brown sugar, white sugar, real vanilla extract, 1 egg, kosher salt, baking soda, flour, milk chocolate chips.
3/4 cup cold butter
1 cup brown sugar
1/2 cup white sugar
Mix just until blended. You’ll need a heavy duty mixer like a Kitchen Aid to handle the cold butter.
Add: 1 egg and 1tsp real vanilla extract. Mix just until it looks slimy.
Add: 1 tsp baking soda, 1/2 tsp kosher salt, and 2 cups flour. Mix until incorporated. If you over-mix, the cookies will spread out and get too thin.
Add a 12 oz bag (2 cups) of your favorite milk chocolate chips. I like Nestles, Ghiridelli, or Hershey’s mini kisses. Blend just until incorporated.
Scoop with a mini ice cream scooper and place on a parchment paper lined cookie sheet.
Bake at 350 for 10-12 minutes. Cool on a paper towel lined counter.
My mother took the prize for meeting me in my world. She listened to my music and showed an interest in the things that were important to me. I remember the fun of going to a fortuneteller together, but most of all, through her example, I learned to love people and diversity, in that order. The time we spent together was precious and I missed her terribly when I went away to college.
As an adult, I saw my mother through very different eyes.
The woman who was so wonderful when I was a child, became very difficult to deal with when I took over her care after my father’s death.
Before Mom became my responsibility, she suffered multiple mini strokes, which led to major brain surgery and significant personality changes. Negative character traits that were barely visible in my younger years became exaggerated.
Her impulse control was practically non-existent. She said hurtful things that came to her mind, which previously she would have kept to herself, and she was paranoid about my father coming back from the dead to chastise her.
I think it might have been easier to handle had I been with her through all of her changes, but after I married and moved away, our relationship was reduced to telephone calls, and a one weeklong visit each year. After my father’s diagnosis of cancer they moved to Salt Lake City, so that I could help.
My dad made cryptic attempts to warn me about what was coming, but to his credit, because he loved her, he never exposed her shortcomings. I wish he ‘d been less cryptic and more direct, because I truly fell into being my mother’s caregiver with a blindfold on.
Up until that time I believed my mother believed in me, to which I attribute much of my success in life.
That changed when she began to vilify me, the same way she did my father and most other perceived authority figures throughout her life.
As I struggled to raise my own family, work full time, and manage a new diagnosis of multiple sclerosis, I did my best to care for her. I cut back my job from full time to part time, losing much needed income in an attempt to find balance.
I took her to all of her doctor appointments, managed her medications, provided her meals, shopped for her, visited with her and took her to get her hair done. Basically I took care of her needs, as I would have for any of my children that I loved so dearly.
She would thank me to my face and tell me how wonderful I was, but then tell our mutual friends her complaints, which of course would get back to me. I wasn’t spending enough time with her, I wasn’t giving her dessert, I had to work too much…
Every story had a shred of truth, which hooked me into a waterfall of guilt and shame.
The “people watching” we shared in my youth, which served to unite us, began to tear us apart when I became the central figure of her gossip. All of a sudden I was on the outside and we both became victims of each others hurt and fear.
She told me my father never wanted me, and was especially disappointed I wasn’t a boy. She told me he never approved of my marrying my husband and things associated with that that are still too painful for me to write. She told me she and my father had a pact to kill themselves (she had a gun and knew how to use it), should they ever become so ill they would have to move in with my sister or me.
My mother opened up a Pandora’s box of information that was never intended for my ears. To this day I don’t know if those things were true, if they were designed and said to hurt me, or if in her confused state she was incapable of knowing the truth.
She abused medications, sabotaged several much needed vacations, and went on hunger strikes resulting in anorexia.
It was more than I could handle. I couldn’t process:
1. The mother I loved, aging rapidly and leaving me
2. The new information she was feeding me that challenged my core beliefs, which were the bedrock of my identity
3. The shock of her betrayal of me to my friends
4. Her drug abuse
5. Her sheer willfulness resulting in life threatening anorexia, which I interpreted as the most profound protest of my inadequate care
6. My profession of listening all day to people who were hurting
7. Everything that comes with multiple sclerosis, including medication that weekly gave me flu-like symptoms, headaches, weakness, and fatigue
8. The responsibilities of being a wife, a mother, and a homemaker
And so I began to disengage, and with disengagement, my mind competed with feelings of guilt, shame, and self-preservation.
I had to recognize what I had power over and what I didn’t. I had to accept I wasn’t capable of doing “it all.”
- I couldn’t stop the clock for my mother.
- I couldn’t return her to her youth.
- I couldn’t take away her pain.
- I couldn’t control the stories she told our friends.
- I couldn’t control our friend’s reactions.
- I couldn’t make her eat.
- I couldn’t stop her anger.
- I couldn’t mend her stroke-damaged brain and show her that her fears were irrational.
- I couldn’t erase the events in her life that caused her pain.
- I couldn’t convince her I wasn’t like all of the people in her life who had hurt her.
- I couldn’t trust her to take her medications responsibly or manage her finances.
- I couldn’t make her the mother of my youth.
- I couldn’t allow her to be the all-powerful queen who had historically determined my self-worth.
- I could be kind.
- I could be understanding.
- I could be firm.
- I could manage her finances and protect her from scam artists.
- I could make sure her physical needs were met.
- I could get her counseling if she wanted it…she didn’t.
- I could ask my son to visit her and take her meals.
- I could choose to never be alone with her, because that’s when she was the meanest.
- I could take her to her appointments.
- I could keep her medications at my house and only give her one day’s worth at a time.
- I could listen to her.
- I could love her.
I’d like to say it was easier once I sorted these things out, but it wasn’t. Being triggered emotionally by her relentless manipulations constantly challenged what I knew rationally. We were both trying to survive, each with our own handicaps.
For the most part, I’m not proud of the time I spent caring for my mother. As in parenting my own children, I discovered unflattering parts of myself I hadn’t been aware of, and was often incapable of wrestling those aspects of myself to the ground. Many times I wanted to give up, but I never did. I was given a test and I performed to the best of my ability.
My mother had been given a test also, and I am confident she also performed to the best of her ability.
In the end I realize I was naïve in my assumptions about caregiving, much the same as we often are about marriage and parenting. I was in possession of some powerful personal myths, which created catastrophic conflict with my reality.
My Caregiving Myths
- There is something wrong with me if I don’t welcome caregiving the parents who gave me life.
- I should be willing to give up everything, including: financial security, exercise, sleep, time with my own family, going to the doctor for myself, friends, and hobbies.
- The same childhood rule that I shouldn’t say “no” to my parents, still applies when I’m an adult.
- I must protect my parents from all discomfort, both physical and mental.
- Aging parents want what’s best for their children, even when they aren’t capable of constructing reality.
- Energy will appear when I’m doing the “right” thing.
- I will have time to repair my own body when my caregiving duties are over.
- If I were a better person I would be able to do it all.
- I am a terrible person for seeing my mother’s flaws.
- Caregiving should be delightful for both of us. We should both be grateful for the experience.
- Duty should feel good.
Caregiving, like parenting, does not come with a manual. It’s a developmental stage of life that deserves much more study and commentary. I’d love to hear from you on the subject. Do you have any caregiver myths?
What I Wish I Would’ve Known or in Other Words…What I Learned
- Caregiving is rarely convenient, the inconvenience of which naturally creates conflicting emotions… all of which are normal.
- Boundaries are essential in caregiving. I can’t care for others well if I’m not taking care of myself.
- Owning and honoring my adult identity is a developmental task that takes its turn getting strengthened and weakened when caregiving a parent.
- It is mindless to slip into a childlike state of mind, expecting my mother to be the mother of my childhood. It blurs reality and makes it impossible to navigate caregiving.
- I am not responsible for creating bliss for my parents. Nobody gets bliss. We all are in charge of our own happiness and we will all experience discomfort, emotionally and physically.
- When people are struggling with their most basic primitive needs, altruism is not an option.
- Energy comes from proper sleep, nutrition, and exercise.
- Today is always the time to take care of my body. Neglect can be irreversible.
- Nobody can “do it all.” Nobody. Nobody.
- The antidote for doing “it all,” is to define what “it all” is. Sometimes “it all” is nothing more than a powerful unidentifiable feeling.
- It is important to determine what is realistic and what isn’t; then prioritize and identify what is most important.
- It is a mind contortion to see a parent behaving the way they taught you not to act.
- It isn’t blasphemy to see parents as something different than The Great and Powerful Oz.
- Caregiving is hard for both the caregiver and the cared for.
- Duty means doing something because it is the right thing to do. It definitely doesn’t have to feel good. Just ask Dwight Eisenhower.
I did my best. If I was given a do-over with the knowledge I have now, I would like to say I would do some things differently, but I don’t think I would. I just would have liked my heart, my mind, and my actions to be on the same page.
What has your experience been? I think it’s time for a Caregiver’s Manifesto. Write to me and tell me what you would like to see on such a document, should it exist?
That’s all for this week. Until next time, may you find your cup half full 🙂
Barbara (The Blog Whisperer)