New Set of Wheels

Mom has a new set of custom-built wheels. Assembled especially for her, this new chariot is low slung with comfort padding and an extended brake system. Over the weekend she has learned to walk and turn the wheels simultaneously, fit through tight spaces, negotiate corners, and cross thresholds without high centering. Although not allowed to tackle ramps, she has the run of most of the main floor, which adds a little interest to her day.

Sometimes one needs to be a bit creative (and quite silly) when trying to negotiate a break in caregiving. It helps to have a good friend:


Dear Lady in Black,
Be prepared; "Operation Sneak Out" goes into effect starting tomorrow night. If Plan "A" to WW is aborted then Plan "B" goes into effect (have your walking shoes on); of course we could always opt out for Plan "C" but it involves a bonfire and your neighbors could get a wee testy. Small fire, though, so it is still in the pot for consideration.
Dress your best, I'm thinking camo (optional) and/or dark clothing would be fitting.
Love,
The Queen of Sneak

Your Sneaky Highness,
You are such a great friend!
I will be ready for whatever adventure we can drum up.
If we make it to WW, though, I'm worried about you driving home at midnight. you are welcome to stay the night. You can have J's room with the sofa bed and the half bath and we'll make sure you are up early to get to work.
Hope I'm not too old for these late night shenanigans. Maybe I can catch a wee nap this afternoon.
Contemplating my disguise...
Lady in Black

Lady in Black,
Last night was fun and I'm ready for the next adventure! I stayed up until 2 am reading my Kindle (did I tell you it was a GOOD story) then slept like a log until I got up at 6 am. Yes, it was a solid 4 hours; no tossing or turning. I felt so refreshed this morning. I really need to borrow the Harry Potter books to catch up on the gap between where I left off and last night's movie. I'm glad you were able to fill me in on the story as we travelled to WW.
The trip home was good, only passed 4 cars so I was able to use my brights most of the trip. Hardly anyone was out in the wee hours of the night.
Thanks for the movie - my turn next time.
Savoring the adventure,
The Queen of Sneak

Queenie,
I'm so glad you had no trouble getting home! Mom and I both had a good day yesterday. I think Tuesday's late night escape did us both good; Mom realized she'd done something special for me, and I got out and did something I really wanted to do (with nearly no guilt). I don't know how you do it on four hours of sleep, though. Although I read awhile too and got one more hour of snoring in than you, I was still falling asleep during So You Think you Can Dance tonight.
I have the books and DVDs ready to send to you so you can fill in the gaps. I was distressed that you had to learn about Dumbledore in such a heartless manner. We should have watched Deathly Hallows, part 1 before our rendezvous, but I was too impatient.
Thanks again for the daring adventure, the pleasure of which will satisfy me for a long time...or, at least, until the next time!
Take care, Queen of Sneak. I remain forever your friend,
Lady in Black

You Never Know

When our kids were little, Don and I used to celebrate our wedding anniversary after they were in bed by cooking steaks and baked potatoes (sans microwave) and having a late night picnic dinner on our living room floor at Aunt Blanches’ coffee table. Although I tried to plot a way for us to spend an hour or two alone this year, too, it kind of backfired when Mom ended up in the hospital with her second stroke in two months. So, instead of a picnic dinner in the park or a movie, we grabbed a quick lunch at Arby’s between our separate doctor appointments and visiting Mom in the hospital. I guess after thirty-seven years we’ve learned nothing if not how to be flexible.

Luckily, both strokes were light and left Mom with only minor changes. She has lost a little peripheral vision on the right side as well as some short term memory. Speech and swallowing have been slightly affected and there is weakness in her right hand, but the first two have improved noticeably and she works relentlessly at all three. Thankfully, Mom is still able to bear her own weight and take small steps (with assistance) and her mind is still quite sharp. We have Home Health therapists and nurses coming out our ears, but we have learned a lot from them.

These changes are emotional for all of us. Mom fluctuates between being scared, discouraged, thankful, and irritated and I think we all battle moments of claustrophobia because of how enmeshed our lives have become. Even those people or institutions meant to help us sometimes seem to have more control over our lives than we do, which can be disconcerting, to say the least.  But we just keep plugging along and thanking God for each other, family, friends, and time. After all, you just never know.

At the hospital we learned about a shower cap that washes your hair without any dripping.

This pen from Staples gives Mom the greatest control over her writing.

 

This place setting of silverware from "Good Fit" provides a knife that cuts meat by a "rocking" rather than sawing action and utensils that bend at the neck and have thick, rubber handles for greater control for arthritic hands.

Belly to the Bar!

A physical therapist and an occupational therapist are coming to the house to help Mom for a few weeks. Already we have picked up some helpful information. Among other things, the occupational therapist showed us some bendable silverware that would help compensate for Mom’s crooked fingers and limited range of motion. The first week of physical therapy focused on Mom’s stance and center of gravity.

This first picture is the way she has been standing, even with help, for about a year and a half; in fact, she is straighter than usual in this picture. Normally, she is more bent at the hips and from the waist down she leans farther backwards, like the right half of the letter “X”. The more tired she is the worse she bends and leans.

Here she is after 40 minutes of therapy and practice. It wasn’t until I took these pictures and showed them to her that she understood what she was doing. Holding her hips over her ankles felt very foreign to her so she has to relearn what “normal” feels like. The therapist kept telling her to “belly up to the bar” as a reminder to stick her stomach out and bring her hips forward. It is amazing what a help this is to me during our transfers. I hadn’t realized how much I was unnecessarily being pulled against. I hope we are able to maintain what we learn from these patient women.

I Don't Mind

I don’t mind being on call for bathroom runs, being an extra set of hands for dressing, being the motor for your wheels and I’m glad to fetch, organize, and fix. It’s an honor to do for you as you did for all of us and it is with love that I try to provide companionship, entertainment, dignity, and support.

But I wish you could realize that I am still a work in progress. My patience is long but limited and I am not immune to my own aches, fatigue, and hurt feelings.

I suppose you thought the same thing, though, when I was little and you were over forty, when Dad was weakening, Letha was needing company, and Aunt Blanche was keeping you home. We needed the same kind of attention and care from you that you need now and our fears were often irrational, too.

You have taken care of everyone and now I want to take care of you. It’s not perfect, but I do the best I can and I keep trying to do better. I hope you don’t mind.