Growing up, I viewed my Mom as a pioneer woman. To me, she could do almost anything, probably because I watched her daily accomplish so much. She was June Cleaver and Carolyn Ingalls wrapped into one super mom package.
Gardening, canning, cooking, sewing, quilting, knitting, cross stitching, working, ironing, cleaning, yard work, painting, shoveling snow were just a few of her regular tasks. Our 3 story brick home was always clean; our clothes were never wrinkled; dinner was always served warm at the same time nightly; green beans were always snapped; applesauce was homemade; and our mittens were always hand knitted. She made homemaking look so simple and easy.
Imagine her surprise when she raised a daughter who hemmed her husbands pants with a stapler; bought new socks instead of darning the old ones; used the dryer as an iron; and Christmas cookies were Oreos with red icing rather than homemade, iced sugar cutout cookies.
Now put these two polar opposite women together in one house and tell them to live together. One is introverted, the other extroverted. One is routined, the other flexible. One is a homebody while the other is on the go. That’s what happened when my mom came to live with me almost a year ago.
I am paralyzed. She has Parkinson’s.
What a pairing. We are like the old TV show, “The Odd Couple.”
There have been some frustrations on both sides as we have adjusted to sharing a house after 33 years of living apart. But I love my Mom and promised to care for her as long as humanly possible. So we have made it work with lots of laughs and maybe a few tears. And perhaps a few grumbles of annoyance at one another.
Parkinson’s and dementia are two terrible diseases. I have watched both of these illnesses rob my mom physically and mentally over the past year. It is hard to watch my active, hard working, talented mother become reduced to sleeping in a recliner a good portion of the day. She can no longer do the things she enjoyed like read, knit, sew, cook, bake, or color because of the Parkinson’s. She can’t remember how to make a cup of coffee, send a text, turn on the TV, or write a letter because of dementia. I daily grieve her loss although she’s still here. It is watching her slowly slip away that makes me feel sorrowful.
Falling has become routine. One night this week, we found her on the floor writhing in pain. She had a terrible tumble and dislocated and broke her elbow. She needed to have extensive surgery to repair all the damage. I think the stress from the fall has increased the symptoms of her dementia, causing more confusion, hallucinations, and paranoia than normal. (I did giggle when she told me she broke her elbow by diving off the high dive as she was trying out for the Olympics.)
But the reality is a punch to the gut as I witness this incredibly strong, independent woman slowly change. I know she is still there. That’s what is so distressing about it. There are great moments where she is clear and coherent and I see my beautiful Mom, but then in a blink of an eye she is confused again and staring blankly into space with no clue where she is or what day it is. This week alone she’s celebrated Halloween, Christmas, and the 4th of July. (I haven’t told her it is almost Thanksgiving.)
I hate being her caregiver. I hate talking to her like she’s a child. I hate bathing her. Dressing her. I hate leaving her alone. I hate seeing her confused. I hate finding her on the floor. I hate Parkinson’s. I hate dementia.
I just want to be the daughter. And her to be my mom.
I’ve cried so much this week because I do not know what to do. I am not physically or emotionally equipped to provide her what she needs to be safe. I feel like I am letting her down. My desire was to make her feel loved, comfortable, safe, and cared for in my home for the rest of her days. Instead tonight she cried and begged me not to leave her alone at the rehab center. I want to bring her home. But I don’t know if I can keep her safe from another serious injury. These thoughts just roll around my head 24/7, making me exhausted as I try to figure out how to love her well in these decisions.
I wonder if she cried this many tears over me throughout her lifetime. Worrying about my decisions and choices. Anxious about health crises I experienced. Concerned about how to best care for me. I’m sure she did. Probably buckets of tears as I became paralyzed with a tiny infant. Had life threatening illnesses. Rode on the Life Alert Helicopter. Went through 29 surgeries. Adopted a child overseas. Experienced a high risk pregnancy. And so many other trials she watched me endure over the years.
Now as I have to do the same for her, It is like the movie Freaky Friday… we have switched roles. I am suddenly the parent and she is the child. Neither of us like this role reversal.
Moving forward, I pray that God directs me (and my brothers) as we make hard decisions on her behalf. I pray that we can feel His guidance and wisdom on this journey and that He saturates us with the peace that passes all understanding. I pray that happy memories of my mom flood our minds to help us survive the sadness of her diseases.
I’m going to close by simply saying I miss my mom.
And she lives right down the hall.
Just Differently Abled 