Put down the knife…
I read a post recently and it got me thinking about my own situation…
I got to thinking about when my mom was first diagnosed with Alzheimer’s, and how logically I understood that there really wouldn’t be anything I could do to stop this or to slow it down, but emotionally I thought that my bond with my mom would make a substantial difference. My mom and I had this incredibly special relationship that we were able to cultivate into a deeper bond as I became an adult, so I thought if anyone would be able to get through to her, if anyone would be able to understand her, it would be me. She always told me that I was her savior. I ‘saved’ her life so many times before, surely I can do it again now. Even from across the country, I thought that I could make this better. I could relieve her pain, confusion, and frustration.
But I failed. Countless times. Again and again.
I was constantly overcome by my own grief. I was often times impatient, angry, and frustrated with my own lack of being able to make a significant difference as I had done so many times in the past. Why wasn’t it working? Why wasn’t she at least holding steady if not getting better? I was humbled by the realization that at times other people were better at taking care of her than I was. I often wondered if being there would make a difference but I was so afraid that I too would be swallowed whole by this disease as it had done to my mom when she was taking care of my grandmother. I didn’t think I was strong enough. I didn’t think I was old enough. I wasn’t ready. And selfishly…I still wanted to live my own life.
My ego was shattered and my heart was broken. For those first few years I became so fragile that I became somebody that other people had to take care of, because I was such a wreck. And I felt guilty, ashamed, and embarrassed because of it. Thank God several of my friends seemed to understand this, at least in part, and stayed. Some walked away, but many comforted me even though they didn’t understand fully how I was feeling and what exactly was happening. They stepped up and gave me shelter, gave me a shoulder to cry on, gave me funds to stay afloat if I needed it, and most importantly – gave me hope. Even when it felt like I was losing everything that mattered, they insisted that I wasn’t. Their support in so many ways gave me the strength the weather this storm.
When I made the decision to move home to be closer to my mom and take more of an active role in her care, I was scared. So scared that I would drown in sorrow and yet once I got here and got settled, it was as though a fog had been lifted. I was surprised. It was the strangest sensation as I didn’t know how much fog I had immersed myself in by staying away. I felt better being closer and being able to see her when I wanted/needed, but I also was strong enough (thank God again for my support group through CaringKind!) to create boundaries to protect my emotional well-being. By no means is the situation perfect. I still fail all the time. I still long to be able to make a bigger difference. As her ‘facilities’ continue to dissipate, I get upset wondering why can’t I be doing more? Why isn’t what I am doing helping more? Why am I not making a difference? I’m here now! Why isn’t that enough? But that’s not how Alzheimer’s works. And I need to practice mercy – first and foremost on myself.
So often my group members (in the support group I facilitate via the Alzheimer’s Association) think that they’re failing too. Failing at being a ‘perfect’ caregiver, failing at doing enough, failing at life; and they suffer mentally, emotionally, and physically as a result. I always try to reiterate: Give yourself a break. Practice mercy…first on yourself…then on your loved one. You are human and there is no rule book for this. This is all a grey area. Put down the knife you are holding to your throat.
I’m speaking to them, but really I’m speaking to myself too. I too need to work on putting the knife to my throat down too.
I tell them that I dare anyone to judge us for how we care for our loved one, especially when everyone’s journey is different. There is no right answer. There’s only doing your best. Everyone’s needs are different. Everyone’s reactions to this are different. You can’t fix this. You can’t make it better. All we can do is show mercy – starting with ourselves.
I’m always trying to be gentle to myself and telling my group members to be gentle to themselves as well. But that’s not always easy. Our pain and our punishment comes out in the strangest of ways. Practice mercy. Practice mercy. Practice mercy. Just try to take it one day at a time, one hour at a time, one minute at a time. This isn’t an Ironman, not a sprint, ha!
Onward.
*Special thanks to Elizabeth Gilbert for continuing to help me articulate my feelings about this*
