A Stroke of Change

I write this tired.  Fatigued really.  That deep inside hollow feeling you get when sleep has been short, and demands have been high. This weariness has been my companion since early this month.  It is now three weeks in.  I am ready to feel rested and relieved.

I have lived long enough to know that life can be a roller coaster with ups and downs, beauty and ashes, happy and sad, big and small, achievements and disappointments, puppies and snakes.   I gratefully know that eventually, rest follows the weary, hope returns to the downhearted, and promise encourages new beginnings.  I also know that not all things are as they appear.  Some things are better than they look on the outside once you wiggle in and get a glimpse.  Some other things, unfortunately, are just plain shoddy, even if they glitter.   That’s life. 

I received a call of distress a couple weeks ago from my 86-year-old mom, who lived independently in her home two blocks from me.  She wasn’t feeling right.  She asked me to come.  I went.  Doug came with me.  It was clear that her issues were beyond my limited abilities.  I called 9-1-1.  Mom had a stroke.  She went to the ER and was admitted to the hospital.  She will recover, possibly with limitations, possibly completely.  Mom is now in an assisted living home, where she will spend time gaining strength back, meeting new friends, and working hard to gain independence once more.

Doug’s least favorite place to visit on any given day has always been the hospital.  His second least favorite place to visit is an assisted living facility. 

Early in our relationship, I learned that injury or sickness and Doug do not mix.  Raising kids landed us in the emergency room every so often.  Kids just do stuff, and sometimes, medical intervention becomes necessary.  We experienced a broken arm (actually two on two different boys), stitches, ear infections, surgeries…  Each time, Doug was little to no help.  In fact, when I was delivering our first child, the nurse brought him a chair.  They thought he was going to faint! 

The last few weeks have been challenging for him.  Doug has visited Mom (Grammy, as he fondly calls her) in a hospital, in a rehabilitation hospital, and in an assisted living facility.  All places he avoids on purpose.  Doug is used to visiting Mom healthy in her home.  His routine has been to stop by her house after his swim, before lunch, to say hi.  Routine for someone with dementia is important.  Routine has been key for Doug. 

I honestly didn’t think much about going to all those clinical places, with Doug at my side, after Mom’s stroke.  I was just doing what was necessary to care for her.  But Doug personalized it.  He saw himself there.

Shaking me out of sleep the other night, Doug said he needed to talk.  I glanced at the clock.  It was 2:00AM.  I listened as he expressed fear about being “put somewhere” late in the dementia disease.  Being put in a place where he had no control, in a wheelchair, in a corner, with nobody visiting.  He said it was his greatest fear. 

I felt like I had been gut-punched.  I felt guilt wave over me for being insensitive to what he might be feeling as we went from room to room and facility to facility with Mom.  These clinical places have many wheelchairs and even more lonely-looking sick people.

Please understand I do not write this so you will respond with kind platitudes about how I shouldn’t feel bad… my mom had needs… I’m doing the best I can… Thank you for that and all. I do appreciate the kindness, and honestly, I realize the truth in all those words.  But hearing Doug painfully fear his fate, however exaggerated or influenced by the late-night darkness, made my chest hurt and reminded me that dementia can quietly sneak up and then pounce with open claws like a lion.

You and I, without FTD dementia, can categorize and rationalize change and its effects in our amazing computerized layered minds.  We realize how time, like the difference between yesterday, today, and tomorrow, last week, this week, and next week, works.  We understand illness recovery and doctor versus patient relationships and how long recuperation can take.   We can distinguish between this hospital and that rehab hospital and what each building is specifically for.  These are all things Doug now struggles with, and they all play their part in making navigation through Mom’s stroke particularly haunting for him.

Sometimes I forget, briefly, I admit, but I forget just the same that Doug’s brain is changing.  I talk to him like it’s not.  I do my girl chat thing and share more details than he probably wants to hear.  I tell him about my day and mom, what I’ve heard from the kids, and what good or crazy things happened at work.  He looks at me like always, with his kind, engaged eyes as I carry on with all my voice inflection and inserted details.  It’s when I pause to take a breath or begin a new subject that I’m reminded.

A question usually triggers the reminder that Doug’s brain is changing.  Recently, the questions have been about mom.  He’ll ask, “How is Grammy doing today?” After I have just given an entire discourse on her well-being.  I used to think these poorly timed inquiries resulted from him not listening or paying attention, but now I understand they result from him not processing.   I talk anyway and answer the questions as often as he asks them. 

Doug and I are grateful that God is in the details.  I believe God knows the change we are navigating through.  He sees Mom’s left side, Doug’s brain, and my fatigue.  We feel the Lords peace, a peace that passes understanding, even amidst the stormy passage we’re in.   Mom is improving each day, and Doug still wants to see her, so I take him. 

I am certain God will be faithful to restore rest to my weary bones, hope when I feel downhearted, and promise for new beginnings. One-day-at-a-time.

Doug and Karen