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Wednesday, March 21, 2012

A Bittersweet Birthday

I just re-read my last post, and even then the signs were pretty strong that there was "trouble in paradise."
Over the weekend, I had to come to terms with the fact that I am not capable of taking care of Stu properly here at the Cottage.  His needs are just too great for a home setting.  Wow, what a blow------although it's a great relief to no longer feel that I should carry the load, it's also very very sad to watch the dream hit the wall and shatter.  But then, if it was not meant to be, it's not something to hang on to.  I would rather face reality than hang onto a pipedream.

All of my trusted advisors (and there are quite a few key people) are in support of my decision.  Even Stu, as unhappy as he was to be taken back to a place that was never his favorite, understood that it was too gruelling, and even in some ways unsafe.  It was also difficult for him------one unexpected difficulty was how hard it was for him to adjust to having me as one of his caregivers.  I was prepared to tough it out and deal with the sleep deprivation and learning new skills, but had not fully appreciated what a difficult paradigm shift it was for him.  Hard enough to be handled by professionals, much harder to be cared for in that way by your wife.

So this morning (my 57th birthday, by the way----Stu turned 69 on Sunday) I sadly re-admitted Stu to Laurel Hill.  We are investigating adult foster care homes in the area-----that may be a do-able alternative to our original plan.  

There is a lot to write about in this situation, but it's late and I'm tired.  I look forward to taking some time to process with you all here on the blog.  So many people have wished me a happy birthday today------and you know, really, it was.  Yes, there were tears, but there is also comfort in recognizing a bigger reality than you had counted on.  And I get to sleep tonight!   That's my idea of celebrating! 

Until next time-----who knows which way this story will develop next?  

God Knows!

Sunday, March 11, 2012

The Dark Side

After Friday's optimistic post, it seems only right to report on the dark forces I've been facing----ironically, much of it has hit right after that post!  I am not superstitious, but it is kinda uncanny.

While Stu was in the nursing home, there was often a nebulous anxiety that would attack him, making him fretful and needy.  Also some kind of pain in his bottom that made it excruciating for him to sit in his wheelchair for any length of time.

My hope was that with a fresh atmosphere and a state of the art wheelchair, these obstacles would lose their grip on him----or at least we could make some kind of progress.

Last night I had to seriously wonder if that will be the case.  All the old nursing home symptoms came at me in full force, making the night sleepless and stressful.  I realized how different our perspectives were----to me, this is a place of recovery and rehabilitation.  To Stu, it is (according to his behavior) a place to be catered to.  He does not want to take responsibility for his needs----he wants to be waited on.   Big sigh------that is not going to fly, I'm afraid.   After consultations with some trusted counselors, I have made the boundaries clear to him.  It's also something I'm alerting my caregivers about-----kind of an interesting byproduct of this whole adventure.  There are five caregivers in all, and if nothing else, they will be getting an education on the difference between caring and co-dependence:-) 

Souls are mysterious.  Sometimes you have to watch someone you love walk right into an abyss, and you are powerless to prevent it.  I would wager that many of you reading this have your own heartbreak along these lines.   How are we to bear this, I wonder?   It seems to me that with each heartbreak that comes my way, my best response is to accept it, let it hurt, let God carry me through it.  "Thy will be done" says the Lord's Prayer.  It's what Jesus said in the Garden before his crucifixion.  It's the only sane way to walk through life.  "Yea, though I walk through the valley of the shadow of death, I will fear no evil, for thou art with me, thy rod and thy staff they comfort me."

We are at a crisis here in the Cottage-----we will see which way the road turns.   I'm grateful for all of you who read my posts, who travel this road with me.  I will keep you posted.


Friday, March 9, 2012


Just picture me right between Stu and Shayna----someone had to take the picture:-)

So, the transition from nursing home to cottage turned out to be an all-consuming effort for the first ten days.  And why not?  I once read about an experiment in which people were given glasses that made everything appear upside down------after several days their eyes had adjusted and the world once again registered as right side up......until they removed the glasses.  Then their eyes had to do the same flip flop.  What I get out of that is that something in us is tuned to see things right side up, and even when turbulence seems to turn our world topsy turvy, given a little time, it will right itself.   And so I find it to be.   

Wed., Feb. 29 was the official day of discharge.  The plan was that the Translink van would pick us up at 11:00 a.m. and transport us to.....home!  I was skeptical-----I expected delays and glitches.  But I was wrong.  Everything went without a hitch.  Despite snow in the morning, storm warnings, and a million details that all needed to dovetail properly, Stu was actually wheeled into the transport van in his new power chair right on time.  I went ahead in our van, hoping I could get there with enough time to whip out my camera and catch his expression when he was escorted into the new place.   Sad to report, the video I tried to take did not turn out well:-(  You will have to let my words here paint the picture.

What stands out for me was the quiet.  Once the driver and the wheelchair technicians had departed, it was just Stu and me.  The caregiver was not scheduled to be there until 1:30, so we had almost two hours to just soak in the experience of once more being together under our own new roof (thanks, John!)  

Stu had no comment to make at first.  I wondered if he understood what had just taken place.  But as the minutes ticked by, his eyes started to take in old familiar objects, and bright new walls.  He started to warm up.  "This is beautiful, Sue.  It looks like a little gallery".   Well, yes, Stu, it does-----a little gallery full of your work.   We had a cup of coffee together.  I brought in the sandwiches I had made for our first meal together.  It was humble, and quiet, and homelike.  A sweet beginning to a whole new way of life.

The next few days were a whirlwind of new tasks, new people, new skills to master  (I am finally, after ten days, gaining some confidence in the art of changing an adult size brief------not a skill I had on my list of "want-to-learn-how-to-do-this!")  I am also getting very proficient in the complexities of getting a large man out of bed in a hoyer and into his power wheelchair.  Don't try this by yourself at home!  I'm blessed with some excellent caregivers, and with their help, good nature, and encouragement, I am coming along.   
Is it exhausting?  Yes, sometimes.  Is it overwhelming?  Yup.  Is it rewarding?  Absolutely.  Tonight, before turning out the lights in his room, I read a chapter out of one of his favorite books "I Promise You a Crown" by Julian of Norwich.  He soaked in every word-----somehow, at the nursing home, he just couldn't concentrate well.  I'm thinking that the steady flow of love, attention, good food, music, color, and visitors are steadying him slowly but surely.  He is still weak, sometimes fretful, insecure------but also more alert, funny, and more rested.  We'll see how this all shapes up.  For the time being, we are holding our own.  Thank you all for your prayers.  I hope to find time to blog more regularly-----living with a severely disabled person is a rich subject, I think.   For now, I'd better head to bed-------who knows when I'll be called on tonight?

Until next time

Blessings from the Cottage on Coutant!