PSA: There is No "I"in Team
When caregiver stress takes over it goes like this: Fight, Flight or Freeze. Often when stress comes to a head it often can turn into shameful reactions and abusive actions. I am about to share my most shameful and painful story of how I shook my mother in pure frustration. My intention is for you to understand that humans are perfectly imperfect, despite our best intentions.
I thought I had carefully created a schedule for my mom to ensure she would be so busy and tired that she would not sundown. But best intentions can often go south when you are sharing your day with someone living with dementia.
We had just finished lunch, and I intended to walk to the park with my mom. I envisioned a brisk walk in the fresh air to help tire her out . I was going to be a Super Star daughter and caregiver!! This is how I worked this all out with my imaginary mama.
I cleaned up lunch and was feeling so pleased with how our afternoon was going to unfold. I was confident and sure that I would be giving my step father a much needed break.The conditions were set for the perfect storm that was about to hit.
“ Okay mom, let's go piddle before we head out.” I grab a new Depends and usher her into the bathroom. I keep myself busy washing my hands as she does her “business”, trying to keep this exchange as normal as possible. She begins to pull up her soiled brief. “Wait, let’s change out that wet brief for a dry one,” I say as nonchalantly as possible. I squat down and start taking off her shoes to remove the brief. “Stop!” she says forcefully. “Mom, that’s dirty, you can’t wear that out.” “They are fine,” she sternly replies as she tugs the brief out of my grip. I take a deep breath in an attempt to ease my anger.
“ Look ma, you cannot wear a soiled brief to the park,” I plead with desperation. “ It is mine and they are fine,” she repeats.
At this point I can feel my blood beginning to boil. Why isn’t she just doing what I say?!! Her brief is wet and reeks of urine. One simple action and we will be on our way.
“ Come on, let’s just put a fresh one on and go,” I plead;
“Leave me alone.Don’t touch me,” she demands.
I grab her shoulders to look in her eyes. I expect to see rage and anger, but I don’t see that. Instead, she looks at me with fear and confusion. I drop my hands and see my incredibly vulnerable mother sitting with her briefs around her ankles. Hot tears roll down my cheeks and I walk out of the bathroom. I see my step dad sitting at the counter. “ Albert,you have to do this. I can’t get her to change her briefs,” I say as I walk out of my childhood home feeling totally defeated.
I am walking, crying and breathing very hard. With each stride, I felt my anger change into shame ,and then into pure grief. I wanted her to do what I wanted her to do. I wanted to be the champion for my mother. The truth was my mother was not the same woman anymore. This was the moment I realized dementia can not be handled alone.
I walked through the open door of the house to see my mom sitting at the counter with Albert. I instantly apologized. She looked at me and said “ That is okay”. She had no idea why, but she knew I was sorry.
To this day, running this memory through my brain still makes me cry, and that is okay. I take it as the moment that I was meant to surrender and learn how to be a member of Grammy Pammie’s Care Team. From my pain I learned how to do this. In my heart I know I have to share this for others to learn from my mistakes.
Include the person you are caring for in the plan:
I never asked my mom her preference. I forced her to go along with my plan. I always cue her in on the agenda of the day. “ Would you like to go for a walk outside this afternoon. I know you love warm sunshine on your back and I love spending time with you in nature”. This invitation is more enticing that lets change your brief so we can go.
Pay attention to your body:
At the time, I heard the blood rushing to my ears and I could feel the heat crawling up my face. When you feel physical responses, it is time for you to disengage. Make sure your loved one is safe and step away. It is amazing how our bodies send signals.
Be mindful:
Recognize that the current circumstance is very hard. Try to remove yourself from the situation and think for a moment. For example I could have told myself that I was feeling frustrated and I am reacting. My mom was not trying to sabotage our day, I was just feeling like I was going to lose my cool. Feeling the moment and not going down the rabbit hole of despair is very empowering.
Create your “Dream Team”:
Recognize and honor all of the gifts that each member of your Dream team has to offer to your loved one. There is no “I” in Team. When you and your trusted loved ones work with one common goal, there will never be a lapse in care. A team can include family, friends, paid help, and even pets.
Know your threshold:
WE ARE ONLY HUMAN. I like to think that I have super powers sometimes, but the truth is I am pefectly imperfect. We are not made to save our loved ones. We are made to love and care the best that we are able. If your kryptonite is doing personal care then you MUST find someone that doesn’t feel that is a weakness.
Forgive:
Sadly, the journey of dementia is a very long, drawn out grieving process. Above all, you need to forgive yourself for all the shortcomings that will come as you are supporting your loved one. Even more difficult is to forgive your loved one for all that is happening. You obviously know your loved one didn’t choose this outcome. However, I have learned the importance of forgiving and letting go. I felt such resentment that my mom left me to care for her, and my kids, all alone.Letting go of disappointment and hurt and replacing it with love and compassion is how I became my mother’s champion. This process is painful,but it is well worth the anguish to get to a place of unconditional love. This I can promise you.
Truly the journey of care partnering with a loved one begins with your inner intention and your ability to let go of your expectations.
Deb Kroner is a dementia care specialist serving patients and their families. If you’re interested in talking with Deb about your loved one, please get in touch.