No Looking Back

“ Freedom consists not in doing what we like, but in having the right to do what we ought.”

Blessed John Paul II

In no way are the decisions I've made the right decisions for everyone. God will guide each of us to make the decisions that are best for us and for our loved ones...at that moment. Please turn to Him for ultimate guidance. What I share is based on my experience. God loves you and your loved one. He alone knows what is best in your unique situation.

I remember the day Boo had his second stroke. That was the day our lives changed irrevocably. We'd been married less than two months and our commitment to each other and our marriage was tested.

I knew that my responsibility was taking the best care of Boo that I could. At the time, I really didn't know just what that would look like. I was sure that after Boo had a brief rehabilitation at home, I'd be able to return to work and our lives would return to normal.

That was my plan.

That was not what happened.

It became apparent to Boo's doctor, his therapists and to me that he simply wouldn't be able to handle eight to nine hours alone so that I could return to work full time. In fact, he couldn't handle three or four hours alone.

This time my resolve to stay home with Boo and care for him was stronger. I wasn't sure just how we were going to make our limited budget stretch to meet our basic needs. I did know that was a minor consideration and one that we'd manage somehow.

The larger consideration was my commitment and my willingness to learn ways to care for Boo that were supportive and that would not diminish his sense of self worth. This was and remains a learning experience for me.

All along the way, there have been choices. Do I want to continue to care for Boo at home? Absolutely and resoundingly, I do. Is being cared for at home best for Boo? This decision I make with input from Boo's doctors, therapists and from friends who see and interact with both of us frequently. Currently, the answer is yes...with some reservations from one of his current doctors because she feels that I am too young to “be trapped at home with an invalid.” (She also believes that dementia patients are always best cared for in an institutional setting.)

For Boo, for me, for now...being at home is the best option.

Our future is in God's Hands. Only He knows what lies ahead.

I choose to look forward not at the past. I cannot dwell on the I-wish and the we-planned themes. I choose to focus on what I believe God wants me to do...today.

Sometimes I succeed. Sometimes I don't.

Thankfully I serve a forgiving God...Who loves me as I am, where I am. And Who prods me to go forward.

How do you make decisions about what is best for your loved one?

Pray...first and foremost...and continually.

Talk to your loved one. Involve him or her in the decision making process as much as possible.

Ask for advice from your loved one's medical providers and from those who know you well.

Find and use the resources in your community.

Find or create a support group for yourself and for your loved one.

Make the necessary decisions...knowing that no decision is final. If what you try first doesn't work, modify your plan.

If your loved one is not yet at a point that these decisions are immediate, start talking. Start looking at options. Start making tentative plans. It is far easier to make these plans together now than to try to do so when you are emotionally distraught.

It is my prayer that the God Who loves us,

Who forgives us,

Who catches us when we fall,

Who carries us when we can walk no longer,

will guide each of us

as we struggle to find His best for us and for our loved one.

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Unveiled Wife

Fasting for Elizabeth

Yesterday was one of those days that Boo just wouldn't eat.  He absolutely refused, even oatmeal, even his new favorite---Honey Nut Cheerios.  Finally after an all day struggle with his appetite, Boo was offered a strawberry milkshake.  Boo will turn somersaults for strawberry  milkshakes...usually.  Not yesterday.  Yesterday he ate one small banana and two potato chips.  That's it.  Nothing more.

Around 2:30 or 3:00 this morning, Boo was awake in bed with a loudly growling stomach, a frustrated wife and, to top it all off, he just wasn't talking.  Finally, I turned on our trusty ol' laptop and pulled up Facebook.  I knew seeing photos of his Louisiana relatives and listening to me read their updates would comfort him.  Boo was fairly interested...and then he saw a photo of Elizabeth.

Elizabeth is a young woman in her early twenties from my Mother's local church.  She's a warm, bubbly, loving bundle of energy.  Boo attended that church for a few months until it just became too overwhelming for him.  So, of course he's met Elizabeth.  It'd be hard not to notice her in the crowd of generally less than twenty people that attend each Sunday.  (This is a small town.) 

Last week Elizabeth was diagnosed with acute leukemia.  I told Boo about it, but didn't expect much of a reaction because he really doesn't know her.  As it turns out, I underestimated him.  He heard me.  He remembered Elizabeth.  And he was affected. 

Boo remembers attending that church and remembers Elizabeth hugging him.  I don't specifically remember that, but she probably did at the end of the service.  Boo remembers Elizabeth bringing a lot of children to Mom's house to sing Christmas carols to him.  (Actually, it was five or six children and they really came to sing to Mom.  We just happened to be there.)  The Christmas caroling was in December of 2009 and not something we've discussed in years.  It amazes me that he can remember that so clearly and yet, forget the bathroom's location less than eight feet from the bedroom door.

Boo asked me to read the updates on Elizabeth.  I read several and he continued asking me to read them.  I read one that I'd read to him before from Elizabeth's sister: 

I cried today, not because of Liz's sickness, but because of her strength.  For those of you who keep asking what you can do---I asked her and she said, "I'm fine.  If they wanna help, tell them to sign up for a United Way Day of Caring Team and help someone in need.  They can do it for me."  So, for those of you who want to do something for Liz, go volunteer.  Do it for Liz.
 

 Suddenly, Boo was animated.  "That's it!  And I can't.  She wants us to volunteer and I can't.  But I can pray and fast for Elizabeth."

And then I understood.  All day Boo's refusal to eat wasn't due to dementia as I'd assumed, but because he was fasting.  His quietness wasn't an inability to communicate as I'd assumed, but because he was praying for Elizabeth.  All day he's done his part...consistently and steadily.  For Boo that's quite an accomplishment and quite a witness.

Today Boo has continued his fast...with modifications to ensure that his health needs are met.  He's giving up desserts and sweets.  That's a hard one for him because he definitely has a sweet tooth.  Yet, he's given them up without complaint.  Not even one tiny complaint.  Not even when a friend ate homemade cookies in front of him.  And we're both praying for Elizabeth...for healing and for strength. 

I've been humbled.  So many times Boo needs help and comfort that I often forget about his very real need to help others.  His ability to physically do things is extremely limited.  His ability to do those things which are truly important is far from limited.   I can learn from that.

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Snow Cones and Thunderstorms

Boo, 2009

Boudreaux, 2010 (He really likes snow!)

Vermont, 1961

Yesterday was a very busy day for Boo. We had to be out and about for a couple of hours and he had to walk significantly more than usual. Boo handled it all quite well. Our only difficulty came when Boo woke in the early morning hours confused and disoriented...and certain that we were still out. With a lot of help from Boudreaux (the meowing, purring kind of help), Boo finally settled down enough to look at photos.

This morning's favorite photos were of snow. In fact, snow photos were the only ones that held his interest. We looked at photos of two granddaughters taken during a trip to Alaska this past winter, photos of Boo and of Boudreaux in the snow and photos of me in Vermont. The more Boo talked about snow, the more excited he got. All at once, he stood up and headed to the door. He was going out in the snow! When he opened the door and was confronted with the summer heat, he cried. He had so wanted snow.

I couldn't give him snow. That just doesn't happen at the beginning of August in North Carolina. I did make him four homemade snow cones. At 3:30 am, that was the best substitute I could manage. As it turns out, snow cones were a wonderful treat. Part of a can of no sugar added canned fruit, crushed ice, stevia and a drop of food coloring whirled in the blender makes a passable snow cone that doesn't raise his blood sugar. I think homemade ice cream is in order this evening.

After his snow cones, Boo was willing to go back to bed...which meant bedtime prayers all over again. God has been thoroughly thanked for snow, for cold weather, for snow cones, for snow men, for hot chocolate and for long johns (!!!). As soon as Boo finished his prayer, it started thundering. Usually thunderstorms are upsetting enough that Boo requires medication to tolerate them. Not this morning. This morning he calmly added, “And thank You for thunder and rain since You've forgotten how to make snow.”

This morning I'm thankful for a God who surrounds us with the heat of summer, the crisp days of autumn, the cold, snowy days of winter and the warm days of spring...an infinite variety of weather to satisfy us. I'm grateful for rest in the midst of thunderstorms. And I'm grateful that Boo is able to share the strange and wonderful twists and turns his mind takes. Even in the confused episodes of Boo's days, he can feel God's presence, recount his memories and be thankful for it all. God is good!

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What Makes Me Happy?

What makes me happy?
       My husband...
          waking up next to him.
          listening to his crazy Cajun memories.
          taking walks in the cool evenings.
          praying together.
          watching him play with Boudreaux.
Life is precious and all too short.
I'm grabbing the good times
     with both hands
          and holding on.

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Still Present

“You make him joyful with gladness in Your presence.”

Psalm 21:6b NAS

Today is one of those days. Boo is having trouble staying oriented. He has a minor infection which causes him to be more confused than usual. I've spent much of the day reorienting Boo to time and place, checking his blood pressure and blood glucose readings, helping him to the bathroom, feeding him small snacks, talking calmly to him...and repeating the process. I've washed dishes and one load of clothes. That's all I've accomplished today. And I had such plans for the day until reality took me by the hand and led me down a different path.

In the midst of my frustration, I thought of all the times I've wandered off the path and God has listened to my litany of complaints. He's held me gently and waited for me to calm enough to listen to Him and allow Him to lead me. And then had to repeat the process many, many times. (I'm a slow learner.) The patience and love He has shown me, I've not deserved.

After one of Boo's mini naps today, he grabbed my hand and joyfully announced to an empty room, “She's still here!” Well, of course. Then again, don't I react the same way with God? I still find myself thrilled that God is continually there for Boo and me. Right in the middle of our messy, chaotic lives, God is present, loving us, caring for us and gently leading us closer to Him. Today I'm most thankful for Emmanuel---God present with us---for in His presence we have all we really need.

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