Wednesday, August 24, 2016

Grieving My Mother While She's Still Here

I have spent many years wanting to write about my journey with my mother's Alzheimer's disease, but afraid to make it public. This has been, first and foremost, my mother's journey, and I never wanted to say anything that might betray her privacy. How do I write about my hurts and frustrations, knowing she could still read it? How could I share with my friends my pain, knowing that many of my friends were her friends as well? What if she didn't want people to know the details? How could I be the one to tell when she is the one effected most?

Yesterday Mom moved out of the home she built with my dad almost 40 years ago and into a memory care unit where she will live out her remaining days. She will never read these public words because she can no longer recognize letters, and she cannot understand many words or comprehend thoughts. She hasn't known my name for a long time. She doesn't know that I am her daughter, she does not know how many children I have or where I live. She knows my face and she knows she loves me, and at this stage, that is enough.

Mom still doesn't know that she moved. We were instructed not to tell her, and she may never actually realize that she has left her home. I have watched this slow decline in mental ability over the past 14 years, and I am still amazed that she no longer knows the home she has lived in for so long.

I have decided to start writing again. Honestly, I have been writing this whole time, but leaving heartache and tears in the drafts folder, anxiously hitting "save" after pouring my pain into words and hoping I don't accidentally hit "publish" instead.

This is my mother's journey, but it affects us all.

I was out with some friends today, pushing myself to stay busy so that the grief doesn't overwhelm. My friends, being caring souls, asked some questions that made my cry. "Would you say this is like a death? Are you grieving this like she died?"

Honestly, it is in a way. These last 14 years have been a slow, painful grieving of her life as pieces of who she is gradually ebb away. I went through a period of grieving about four years ago, and I described it as grieving her passing. I know that sounds morbid and horrible to someone who has never experienced a disease like this, but my mother is gone. The woman who raised me, the one with the quick wit and sharp intellect, who still holds the family record for skipping rocks across water (eleven skips, if you need to know) is gone. And we have grieved each piece as it goes, some immediately and some as we realize it months later.

I read something on social media a while back that said, "there was a time that your parents held you on their hip, set you down, and never picked you back up again." None if us really know when that was, it's a occasion that goes unmarked and unnoticed till years later when you are left with a memory of time past and a curiosity as to when it ended. When was the last time she called me by name? When was the last time I talked with her on the phone? When was the last time she spoke a full sentence that made sense?

Monday night we had a family dinner, and I brought along my sister-in-law (and incredibly gifted photographer) to capture this last dinner. It was the last time we all gathered at our family home, the only family home my brother and I have known. I teared up as I realized all these lasts were happening and I was fully aware. The last time I hugged my mother goodbye in the front foyer. The last time we walked in the backyard, watching the kids climb the fruit trees. The last time I saw her sitting in her familiar chair in the family room, which has been her spot for as long as I can remember. The last time she waved goodbye from the driveway.


The dinner was wonderful. I had prayed for a long time that she would be in a good frame of mind, and she was incredibly joyful and cheery. She knew she loved us, and she showed us her love with bright smiles and cheerful words that didn't make any verbal sense but spoke clearly with her tone and the light in her eyes.

It was a perfect last.

I have spent a good deal of time in the last couple of days crying. I am mourning the loss of my mother. The woman she was is gone, but her body was still a familiar presence in her home and now we are mourning that part of her life as well. They say that Alzheimer's is called "the long goodbye", and I could not agree more. It really is a long, long process of slowly losing someone you love, and I would not wish it on anyone.

I love you, mom.


Jenn said...

Your detailed descriptions bring a flood of memories. I know the exact chair you speak of. I love you Tiff and am crying too. I am so very sorry for your journey, it was hard enough losing my grandma from this horrible disease....but truly heartbreaking to for me to watch you lose your mom this way.

Anonymous said...

Beautifully written Tiff... I felt the same way about my parents divorce... my family died and I had to go through the grieving process (often feeling like I was crazy) for it... Now it's a new normal. Which is hard and as I bounce around to too many houses for holidays and such I still grieve the old way, but it is what it is and I can't change it. But the Lord has used it in my life to relate to others in a way I never could have before. That is the only light.

momluvs4kidz2000 said...

I'm so sorry. Your words are beautiful and while I'm so glad you shared, I wish things hadn't gotten quite to this point where you felt okay sharing if that makes sense. My heart and prayers are with you, I pray for you to be able to feel and embrace your own memories of love and life with your mom over the coming days. <3