Sunday, September 30, 2012

When God Pries Your Fingers Open

"Hold everything in your hands lightly, otherwise it hurts when God pries your fingers open."                                                                      Corrie Ten Boom
The past few weeks have been a time of learning for me.  I'm learning to open my hands, to let go.  OK, the reality is that God is having to pry my fingers open.  And yes, it does hurt.  Some of the tightly held hurts that I've hugged closely for know, the ones that you allow to define you.  Well, God is in the process of helping me release the death grip I have on some of those hurts. 

Who am I without those things that I've allowed to define me for far too long?  I'm learning.  And I'm rejoicing through the tears.  I'm a child of God...and that needs to be my first identification.  The real "who I am."  All the rest is extra.

After the last few weeks, I felt like I'd not spent the time and energy with Boo that I should have.  Last night, Boo was confused.  But one thing he knew and knew with complete certainty.  That was that he was God's child.  He might not remember all he'd like, but he knows the essentials. 

Boo and I discussed what is really important...for a short while.  His ability to hold onto his thoughts was severely limited last night.  One of the things that Boo said was that we need time to regroup, to rethink.  Maybe that's what I've accomplished recently.  I miss being able to talk with Boo about things anytime.  Mentally, he's not able to do that on the spur of the moment.  It makes those times when we can more precious. 

One thing I know for sure:  When God pries your fingers open, He wants you to have more.  It may be a painful process, but God has more in store for you.  Just as He does for Boo and for me.

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Wednesday, September 26, 2012

Short Posting Break

I thought I'd posted something about this earlier, but obviously didn't.  I'm taking a short term online class and won't be writing any new posts until this Sunday or Monday.  We are doing well.  Boo has celebrated his 68th birthday and is still times.  He's suspiciously quiet at other times.  He keeps me guessing!

Monday, September 17, 2012

A Daybook for September


Outside my window...

it's dreary and overcast, even the birds are quiet this morning. This gray misty day is just not much motivation for me to get up and get moving, but I must.

I am thinking...

about the outward things that give me inward purpose. That sounds rather academic, but it certainly isn't. It's really day to day stuff. It's just the things that trigger a response from my heart, moving them from the routine to a whole other realm. For instance, holding and praying my rosary helps me form a daily connection with Jesus' life, with those for whom I pray and with God who infuses that act with Himself. Or preparing snacks and meals for Boo, a very routine part of our day, but one which provides endless opportunities for sharing the beauty of a special mug or flower, listening to and reciting poetry and just talking.

I am thankful...

for the positive response Elizabeth seems to be making to her treatments for leukemia. I'm even more thankful for her positive, giving attitude. It's such an inspiration to me...and to many others.

In the kitchen...

are plenty of leftovers for today. Large Sunday dinners tend to provide lots of extra food for us and lots of extra dishes. As a matter of fact, I have a few things still soaking in the sink waiting to be washed. (My mother would probably be horrified at that admission.)

I am wearing...

comfortable jeans, an off white long sleeve shirt, a black headband and bare feet. Of course, my feet are tucked under a quilt at the moment.

I am creating...

more digital scrapbooks. This time I'm working on Christmas presents. I'm also thinking about preparing family calendars for Christmas. If I were willing to follow a prepared template, it would be simple. But no, not me. I want to reinvent the wheel and completely design my own.

I am reading...

Medjugorje: The Mission by Wayne Weible and several novels.

I am looking forward to...

Well, for some reason this one is difficult this morning. I really am looking forward to several things this week and I can't remember any of them at the moment. Has my hot tea not kicked in yet?

I am learning...

more with Paint Shop every day. It's so much fun to experiment and play with this program. It also keeps me occupied when Boo needs me beside him. I'm also learning some Irish crochet stitches. Oh, maybe I didn't phrase that quite right. I'm learning some crochet patterns that mimic Irish cable knits...since I don't knit.

Around the house...

it is very quiet. The whole neighborhood is quiet this morning.

I am pondering...

my deep need for relationship. More and more I find myself drawn to those with whom I can be authentically myself and those who think. Recently, I've reconnected with high school and college friends, with cousins and even some friends from Girl Scout camp years ago. Thank you Facebook! Many of these I've maintained a superficial relationship with for years by exchanging Christmas and birthday cards. Now, we actually have “conversations” on FB about our faith, about politics (and boy, do we disagree!), about those things that are truly essential to each of us...and about mundane, every day things.

One of my favorite things...

is slowly savoring a cup of hot tea with a little stevia and sometimes a little lemon...depending on the type of tea I'm drinking. Never, never would I pollute a wonderful cup of tea with milk or cream, but that's just me.

A favorite quote for today...

“Eros will have naked bodies. Friendship naked personalities.”

  1. S. Lewis

A few plans for the rest of the week...

Wow, just thinking about the rest of the week makes me tired. We have several appointments. The preparations for these appointments is far harder than the appointments themselves---reminding Boo several times daily about the upcoming appointments and what we're likely to experience there, making sure I have all the essentials in a backpack (necessary papers, snacks and water, change of clothes for Boo, BP cuff and glucometer, meds just in case we're out longer than anticipated, a knotted cord rosary and a photo of Boudreaux to help during those confused times for Boo, my wallet, a small brush, comb, wet wipes, etc.) and, most difficult of all, preparing him for the trip itself (Yes, we'll be leaving the house at ___ time in a car. We'll be back in time for ____ hopefully. Yes, you'll have your rolling walker. No, we won't get lost. We will be coming back home. Boudreaux will be waiting for us when we get back...)

Sunday, September 16, 2012

Sunday Snippets

This week Boo and I discussed several things that dementia can't do in Ten Things Dementia Cannot Do.  I've spent so much time focusing on Boo's disabilities that I missed what hasn't changed.  The next post I'm sharing I wrote in response to a friend's frustration with her husband's doctor, When You Disagree With the Doctor.  The last post I wrote in response to Boo's prevalent attitude, A Joyful Attitude.

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A Joyful Attitude

Boo outside, September 2012
It's been a while since I posted photos of Boo.  He hasn't been cooperative.  In fact, he has been adamant about not having his picture taken.  Yesterday I managed to coerce Boo into spending some time outside.  Once he and Boudreaux settled down on the patio, he really had a good time.  I read part of Medjudgorje:  The Mission by Wayne Weible.   Boo enjoyed watching Boudreaux play in the grass less than six feet away from him.  When a loud car drove by, Boudreaux gave up all pretext of being a big brave tiger and ran to Boo, jumped in his lap and refused to get down until I tried to take his picture.  Then he jumped down and went to the door to go inside.  
Boo's joy is contagious.  Many, many times I've been tired or frustrated or discouraged or all three and  Boo's attitude changes all that.  He finds joy in the small, immediate, daily things---homemade yogurt or beingets, Boudreaux's antics, a passage in a poem or book, the warmth of a sunny day.  Soon I find myself sharing his joy.  What a gift!  With all the disabilities Boo has, his most wonderful asset is his attitude.
Boudreaux refusing to be photographed.

Saturday, September 15, 2012

A CD for Boo

The last month or so (I'm scared to check and see how long it's really been), Boo has been more confused, more easily upset and definitely needier emotionally. As much as I love him and want to meet his needs, sometimes I need a break. You know, to take a bath, to make dinner, to sit in silence, to just be. Even when I can convince Boo that I need a little time, he's still uneasy.

A few days ago when discussing my need to take a bath again, Boo announced that if he could just hear my voice it would help. Ahh...maybe cloning myself...except I don't think the world is really ready for two of me! Then, it occurred to me that a recording of my voice might be helpful. Actually, I was ready to try anything at that point.

We discussed what Boo might like on a CD and he had some definite opinions. He wanted some poems, some Scripture, a few Chicken Soup type stories, the prayers we're concentrating on this month, music and some jokes. Mostly, he wanted the simple routine things that make up his day. That was doable.

For the next couple of days I recorded bits and pieces of our day. It was pretty simple and not intrusive as I'd imagined. Then I chose a few songs and excerpts of two pieces of classical music that Boo likes. Using very basic software provided with my computer, I prepared a CD for Boo. The volume is iffy in several places and there are awkward pauses at times. Still, it's start.

Day before yesterday and yesterday, I was actually able to get a few things done on my own. Boo was not only content to listen to his CD, he really looked forward to it. I wish we'd thought of this sooner.

Here's what we finally included: our morning prayers that include the two prayers we're concentrating on this month, a saint story, poems from lunch with Boo reciting several of them, five songs that Boo likes, four Chicken Soup type stories, a decade of the rosary that we prayed together, two excerpts of classical music that he likes and a conversation we had that I didn't realize I'd recorded. I completely forgot a scripture reading and jokes. Still, it's just a homey, familiar CD and very useful.

Why didn't this occur to me earlier? Boo, like many with dementia, thrives on routine, consistency and repetition. Lots of repetition. I think with our next CD, I'll try including a couple of our friends too. Maybe a short conversation between Boo and friends would be comforting. Later, I'd like to include some grandchildren as well. This type of CD might also useful at the hospital to provide a familiar background and to drown out hospital noises.

Friday, September 14, 2012

When You Disagree With a Doctor

Recently, an acquaintance asked me what to do when she strongly disagreed with a recommendation made by their family doctor for her disabled husband. I've certainly been in that situation. Still each family is different and what works for us, may not work for you.

Really, there are no hard and fast answers that I've found. I strongly prefer a medical practice that encourages dialogue and that is willing to discuss the pros and cons of alternative therapies. We can deal with more autocratic practices. It just isn't as pleasant and straight forward.

Here are seven things that I've found helpful when considering treatments other than what Boo's doctor, physical or occupational therapist, etc. recommends. (Most of the time we do follow the recommendations, even after looking at other options. Not always, but usually. We do always clearly communicate our decision to Boo's primary care doctor. That way he or she is completely aware of what's happening with Boo.)

If this is an emergency situation, clearly state your medical wishes, provide a medical power of attorney and let the professionals save your loved one's life. This is not the time to get in the way.


If the medical professional suggests a therapy or medication that seems out of line, I ask the reasoning behind his or her recommendation. Many times this simple questioning is all it takes for us to understand. It also helps to eliminate second guessing on my part later on.

Once when I questioned a doctor, with whom we were very pleased, he gave me a rather blank look, glanced at the prescription he'd just written for Boo and did a double take. He was in the wrong room. They were exceptionally busy that day and the doctor mistook Boo for a different patient.


After questioning the doctor or therapist and understanding their reasoning if I still disagree with the treatment, I'll ask what alternatives there are. The practices I like best will discuss them. Ultimately this saves a lot of time and a lot of my energy. Many times the alternatives haven't been chosen for a good reason. Sometimes I just need to know the reasoning involved.

At this point, if a medical professional refuses to discuss alternatives, I ask if a different time would be better. Just for the record, that has never been the case. Still, I like to ask. Then, I clearly tell whomever I'm dealing with that I'm uncomfortable with the recommendations they've made and I tell them why I'm uncomfortable. I also tell them that I'll be examining alternatives and that we'll contact their office later.


At home, I promptly search the internet for alternative treatments, the effectiveness of the various treatments and the feasibility of Boo using the different treatments. The Mayo Clinic and Web MD are two good sources of medical information.


I call several good friends to ask questions. One is a retired doctor. Two are nurses and one is an occupational therapist. Many times insurance companies have hotlines with nurses that will answer questions. That's not a bad resource to consider. In our area, we have two large teaching hospitals. Both have public hotlines staffed by nurses, residents and interns who seem knowledgeable.


At this point, I contact the original medical professional again to discuss what I've learned. This has met with mixed results. Usually, they are open to some discussion. On one occasion I was told that, “I don't discuss that type of thing with patients. They aren't doctors. They need to follow my plan or go elsewhere.” We went elsewhere.

Generally this is the point where we come up with a treatment plan that works for all of us. Rarely, that hasn't been the case.


If we haven't reached a treatment plan that both the medical professional and Boo and I are comfortable following, I get a second opinion. Generally Medicare and insurance companies will pay for second opinions with little fuss. Locating another doctor has never been a problem for us. I call the local hospitals. They have referral services. Another alternative is to call the medical licensing board in your state and ask for a referral.


After I've researched different therapies, considered the feasibility of them and talked to the doctor again...or gotten a second opinion, it's time to decide what to do. Make a plan and adhere to it.

Boo's health is too important to dilly dally around. No treatment plan will be perfect. If we come up with one that generally works well, then I'm happy.

Tuesday, September 11, 2012

Ten Things Dementia Cannot Do

Dementia can take so much away from Boo at times---his memories, his ability to function independently. His life has changed and changed dramatically in the last few years. This week end Boo and I talked about just how limited dementia really is. Several times he told me, “Dementia may be my cross, but it isn't me.”

It all started when I read him a poster about how limited cerebral palsy is. He thought about it and started talking. For once, I had a pen and the back of a grocery list to scribble notes while he talked. Even living with Boo every day, I missed so many of the ways dementia has not changed him. I guess I never really thought about that aspect of it. Just the limitations.

Dementia cannot
...kill my enjoyment of the PRESENT.
...lessen the power of TOUCH.
...diminish my STRENGTH.
...overshadow my JOY.
...crush my LOVE.
...control my ATTITUDE.
...take away my LOYALTY.
...steal my SELF.
...destroy my FAITH.
...deny me ETERNAL LIFE.

Boo's list of ways dementia does not limit him may not apply to everyone with dementia. They may not all apply to him later. Dementia is a strange disease that affects everyone a little differently. We don't know what the future holds. We do know Who holds our future in His hands...and that makes all the difference. 
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Sunday, September 9, 2012

Sunday Snippets

Today I'm sharing two posts.  The first is Fasting for Elizabeth and the second is Up the Mountain.


Up the Mountain

Digital alteration of an oil pastel of Boo, Christmas 2009 before his third stroke.

The way Jesus shows you is not easy.  Rather, it is like a path winding up a mountain.  Do not lose heart!  The steeper the road, the faster it rises to ever wider horizons.

Blessed John Paul II

 Boo really perked up when I read this quote from one of his favorite Popes tonight.  "That's really how it is.  It isn't easy, just like going up a mountain.  I don't understand why things happen and I get confused a lot of times.  But I have to keep on." 
This has been a good day for Boo.  Although he's prayed much of the day for Elizabeth and her family, for our family, for several friends who have continuing health problems and for one of my cousins who married today, he's been rather quiet otherwise.   When I questioned him several times today, it was obvious that he was reasonably well oriented.  Boo just wanted to be quiet, to stay focused on his goals. 
Once again, I can learn a lot from Boo.  Pray constantly.  Meditate quietly.  Remain focused on the truly important things.  Talk less. 

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Saturday, September 8, 2012

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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Friday, September 7, 2012

7 Quick Takes Friday

Yep, we're still here!  The last few weeks have been stressful.  I let blogging go to make more time for Boo and to support others who've needed...umm...well, support.  Boo's dementia has not noticeably responded to new medication.  Some days and, nights for that matter, are better than others.  Soon it will be time for new tests and more assessments.  Until then, I'm learning to go with the flow and keep accurate records.
Tomorrow is sugar free oatmeal cookie day.  I bought lots of oats for Boo's almost daily three cups of oatmeal at a time craze.  Now, he's interested in Honey Nut Cheerios.  Go figure.  We still have six pounds of oats.  So, once I figure out which sugar free oatmeal cookie recipe we liked best, I'm making cookies.  Lots of cookies.  They freeze well and I like having homemade treats on hand for Boo.  Maybe, just maybe, Boo will roll cookie balls by hand.  That's my least favorite part.  We'll see.
Last night I went with a good friend of mine, Judy Mack, to UNC Central University so that she could participate in a forum.  I learned more in that two and a half period about the history of the Wilmington 10 than I had managed to piece together in all the preceding years.  Just as a side note, and to let you know just how far behind the times I am, the forum was televised to several NC colleges live and all participated in the question and answer period.  I felt like I'd been transported into the future.  Really, it was one of the best uses of technology that I've seen.  After the forum, Judy and I talked to several people who recounted stories of her late mother's activism.  This was definitely one of the highlights of my week.  Here's a link to a news article on the event by a reporter for The Herald Sun.
I've learned some new to me skills with my Paint Shop program while I took a blogging break.  Now I can make and use photo masks, do more extensive touch ups on old photos and manipulate text the way I want.  OK, I know most of you can already do all that and it was easy once I understood what to do.  Next, I'm working on creating my own digital scrap booking paper and elements.  This is the most fun I've had since art classes years ago.
Last Sunday two of our children came to visit for the day.  It was great to see them and to hear about their studies and money making schemes.  They're both creative, if nothing else.  Both are also developing an interest in least on an informational level.  Yea!  They don't have to agree with my views.  I just want them to know what is happening around them and make up their own minds...and to act on their beliefs. 
A young friend of ours in her early twenties was diagnosed with an acute leukemia this past week.  Her father also died of acute leukemia when she was in elementary school.  I was devastated.  Liz is a vibrant, energetic Christian who planned to graduate from college and get married this December.  Both plans are on hold right now while she concentrates on chemo and healing.  When her friends asked what she needed and how they could help, Liz responded in typical Liz fashion, "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."  That's Liz's spirit, always sharing and upbeat. 
Please remember Elizabeth and her family in your prayers.