Sunday, December 18, 2011

All I Want For Christmas Is...

My step-son came to visit this weekend.  It is a 700 mile round trip for him so visiting for 24 hours is a 36 hour trip in reality.  It was wonderful to have him even though it was a short time.  My husband's eyes lit up when CC walked in.  His facial expression didn't need any support from spoken language. Message conveyed and completely understood.
I've been looking for a way to exercise - something I absolutely don't enjoy.  I once joined a fitness club with my husband and honestly, I wouldn't have gone more than the first month but for the prodding and determination of my husband.  He never wanted to miss our exercise routine. Thinking instead of doing is an unfortunate character flaw but this time I've got some new motivational, kick in the pants, do it kinds of incentives. Reading an article on the benefits of exercise, the author suggested returning to activities you loved as a child.  That was easy for me.  I loved bike riding, hide and seek in the dark, swimming, and roller skating.  Both the bicycling and roller skating struck a note and out came a flood of pleasant memories. As luck would have it, my step-son has worked on the retail end of bike sales and is also an accomplished bike mechanic.  He agreed to help me choose a bike and make sure it was fitted just right.  Lucky bit of fate having CC visit at the very time I decided to purchase a bike.  I've just got to get up my nerve to let go of the money.
I'm buying my own Christmas present from RD this year for obvious reasons. Maybe the bike will be the surprise.
RD has had 3 or 4 'good days'.  The unit of measure in this case is how many hallucinations, delusions, and capgras episodes he might experience in a day/night.  Although it has been extremely difficult to understand his speech this week, he has been more engaged, talkative and interested in the world around him.
Snow began falling yesterday round noon and continued until noon today - maybe 8-10 inches. The snow was accompanied by 25-35 mile per hour winds so snow drifts made driving nearly impossible.  We ventured out anyway to mail a Christmas gift, renew a dog license, and check out the snow totals around town.  RD was pointing to the high drifts and mountains of snow piled up after cleaning a parking lot here and there. He made several comments about the piles of snow around town.
Today's behavior has nothing to do with how tomorrow will go but I am VERY thankful for today.  Merry Christmas if you're listening.  All I want for Christmas is you (oh yes, and that bike).

Saturday, December 3, 2011

"I Want To Go Home"!

Spoke too soon.  The plea to "go home" began again this evening.  I asked what home he wanted. To my surprise he said, "Oak Street".  He lived on Oak Street 40 years ago with his first wife.  Experience tells me to act on this desire rather than spending hours trying to redirect or talk him out of it.  Unfortunately, we had our first snow of the season today.  Although it wasn't much snow, it was a heavy, wet snow.  It left a thick slush on the road ways that began to freeze this evening.  But, undaunted, I bundled RD up with a coat and hood and seat belted him into the car.  Off we went for an evening ride around town.  Our first stop was Oak Street but he could not identify his house.  We drove past his old office building, the courthouse, the library, and familiar landmarks.  Eventually, I grew nervous driving around on roadways teetering between ice and slush.  When we got home, RD seemed happy and comfortable back in his real "home".  Wish I could figure out why "wanting to go home" is a nightly request.  Most of the time, the home he wants to return to is his childhood home but tonight was different.
He is in bed early this evening (8:00pm), giving me a blessed few hours alone. This time sweetens my life.  My sister asked if I had any particular wish for a Christmas gift this year.  Without a moment's hesitation, I told her the gift of time would be the best gift I could receive.  If someone could come and stay with RD while I went out alone - priceless. If you can move about with ease, the penned-up feelings associated with 24/7 care escape you.  There is really nothing else quite like it.  What I wouldn't give for a day alone, free to explore what I want, when I want...

Friday, December 2, 2011

A Few Good Days

Dreaded the news I knew was coming - Home Health Care terminated services today.  RD has improved his strength and endurance significantly after six week of exercise with home health care professionals.  The good news - he's doing much better.  The bad news - he will no longer have the support under him.  Neither will I.  This group of nurses were a godsend to me, solving a month-long battle with RD's heal wound in less than a week, helping me find innovative ways to increase RD's calorie intake in healthy ways, and listening, really listening to what worried me. Back on my own in this completely baffling world of Lewy Body.
Five days of calm and quiet. Aaaaahhhh!  RD hasn't engaged in the nightly ritual of wanting to go home, trying to leave the house, and agitation for nearly five nights.  What a wonderful relief to spend an evening watching TV and responding to an occasional misidentification of an object (tonight he thought his shirt was a fish).  How long will this last?  There is nothing about today that will predict tomorrow.
A long day indoors.  The weather has turned cold and blustery.  If forecasts hold, tomorrow will bring freezing rain, turning to snow in the afternoon.  This will be the first snow of the season if it shows up.  I'm already thinking of spring.  The older I get, the more I dread the winter cold. Wish I could move to a warm climate, putting my feet on a beach at will.  Okay, a little too much time to dream I suppose.