One of the many things I have learned from working with people with Alzheimer's disease, is that our perceptions of our lives are real to each of us. When I work with someone with Alzheimer's I am called to enter into their reality, pull up a chair and join them there and listen to their stories, ask questions, comment, engage....not correct them, nor try to convince them of the truth, not "set them straight." I get to just be with them and allow the process to unfold. Sometimes they have moments of clarity and they realize, "I was somewhere else wasn't I?" I can assure them its ok, it was a nice place to visit and maybe we will visit there again. Its ok to just be present with them. This process and my work with these precious people has probably been one of my greatest teachers about calming the heck down and letting situations play out as they will. Being present to be a support, a facilitator, but not a construction foreman.
Our fears and pain are all relative. Recently a co-worker told me she had a lot on her plate and couldn't help out with a client because her 17 year old cat died last week and her husband has the flu. I had to be quiet for a minute, I had to choose to not compare our journeys, not judge, not roll my eyes, I had to choose to say, "Ok, I understand." For her, her reality was that she was handling all she could manage. Its not mine to decide whose struggles are worthy of real care and whose are silly. Because, I am just petty enough that I can go there.
I have always been very rooted in reality. The cold hard truth. Even as a young child I was not good at pretend play. I was not a fun pretend play mom. We didn't present Santa or the Easter Bunny as real, they always knew I was the tooth fairy, I feel guilty to this day that my kids never experienced the mischievous antics of the Elf on the Shelf. (I recently saw a FB picture of the elf dressed in red, saying, "Seriously, this asshole is back again?!" My guilt mysteriously evaporated! lol) For the record we didn't banish these things either, but they knew they were pretend. Life has always been serious business, tumultuous, and I needed to know what was real and where I stood in the big picture.
So in my early years as a caregiver I really struggled with the "pretend" world my clients often lived in. I struggled with "lying" to them. I had to work at learning how to say, "Oh your husband is out at work, but he will be back soon." Knowing full well that her husband had been dead for the past 8 years. The greatest gift I can give my client who thinks the President of the United States is coming for an afternoon visit, is to join her in her reality for that moment. To be in the moment with her. "Well gosh if HE is coming over, lets make sure your hair is brushed and lets paint your nails with that shimmery pink polish that you love!" Soon that idea will drift away and there will be something new to focus on, but her hair and nails will be done.
I find myself often wondering what is real in my own life right now. Is my girl really as sick as I feel she is? Am I just catastrophizing? Maybe I am crazy! Is this really happening? Is her journey just always going to be hard? What am I really seeing right now? What is the truth in all of this? Is there sobriety? Is there not? What is my part? Do I have a part....I think my part is to be quiet most of the time, to be as present with her as much as she needs or wants me to be, and to help her through the mechanics of the parts that she can't manage on her own. To not judge her efforts and to just let them be.
I will say, I am only mildly successful most of the time. I have begun thinking of her like my clients whose reality I need to enter into with them. I can hold space for her.
"When you hold space for someone, you bring your entire presence to them. You walk along with them without judgement, sharing their journey to an unknown destination. Yet, you're completely willing to end up wherever they need to go. You give your heart, let go of control, and offer unconditional support." From The Sweetness of Holding Space for Another....a Huffington Post blog post.
I recently spoke with a mom whose child has some significant mental health struggles. She explained that to have this young person follow through on chores, they have to walk along side and remind and prod and encourage....." wipe that far corner down, pick up all of the wrappers and put them in the garbage, ok pillow cases on the pillows." More than 2 directions and this young person gets lost and nothing gets done. Friends tell her it shouldn't be that way....."No it shouldn't, but it IS." I could tell a million stories when I have been told "it shouldn't be this way."
"Yeah, I know that." LOL I know better than anyone how it should be. How I would like it to be.
Thank God for the other mom's who understand that the reality "is what it is." Who come into my reality with me and can sit for awhile there and not judge if I am enabling by providing a safe drug free place for my sick child to live. Who hold space for me. They don't tell me I am doing it right or wrong, they just be with me.
Maybe you are wondering how anything changes, or gets accomplished with all of this "being" with one another. lol Things naturally have a way of playing out. Sometimes for the better, sometimes in ways we wish they hadn't. We are fluid beings... always moving in some form. Sometimes in the quiet times, our brains can receive the messages our spirits have been trying to convey but we have been too busy to listen. Its amazing when I stop trying to steer the journey, when I take my hands off the wheel, how things change. Its my fear that pushes me to hang on with white knuckles. Living in a place of trust in God is my sustenance. Trusting in His direction, His power, His direction. Its not all up to me.
I used to think that once the drugs were gone, then she could really begin to work on getting healthy. That she would be bright and shiny and able to get a job, able to go out into the world and be ok. That is not our reality at this point. Its not her reality...and as sad as it is for me, it is even more so, a million times more so, for her. I keep saying to myself (not out-loud lol) "just because something is hard does not mean its wrong."
So I choose to embrace our reality. Most days.
In the spirit of honesty....I will share this. Recently my girl balked at some paperwork requirement to hopefully get her some services in place. I replied to her sass with, "Well, you can always live under a bridge."
I regretted it the moment it came out of my mouth. It made her mad. Hurt her feelings. I felt ashamed of myself. Cruel. We worked our way through it. I will never be able to do this journey perfectly. Ever ever ever. I will make mistakes and so will she. And hopefully we will be able to extend grace and forgiveness to one another during those times. Hopefully we will have people around us who hold space for us, who pray for us, who walk with us...and allow us to do those things for them.
God bless us all.....please.