Showing posts from May, 2012

Use It or Lose It?

Lacy's knees are now black and blue from so many falls.  The skin is scraped off in places.  For most of the day, our boy sits because he cannot stand for long.

When we last visited Lacy's primary care physician to obtain the application for a handicap placard, I mentioned the falls, and asked if we could get a prescription for a walker and wheelchair.  He was taken aback, and said he'd rather wait to talk to the neurologist to find out what he wanted to do (this appointment is not until July).  I let him know how long it would be before this appointment and he said, "Well, the neurologist might suggest that he do without it for a while.  You know, use it or lose it."

I repeated what he had just said, "Use it or lose it?"   I wanted to yell at him...and say Of course he's going to lose it! but I didn't.  Lacy was with me.  I knew that Kenny would call later to discuss the falls and the need for the equipment.

It takes some patience and a willing…

Live in the Moment

High school class reunions are great places to get some perspective.  We attended Kenny's 40th reunion this weekend.  I have gotten to know and become friends with many of his high school classmates over the 35 years we have been married.

We are all getting older.  There were grayer heads.  Some folks had canes.  Some had battled chronic illness in the last few years.  Most were trying to live in the moment, and the losses they had suffered were the catalyst for their renewed determination to make the most of the time they had.  Some had lost spouses, and one of Kenny's classmates talked about how the loss of her spouse had given her the courage to take every opportunity to live her life to the fullest.  Because she knows that we're not guaranteed tomorrow, she is taking the opportunity to live in the moment.

Those friends who had lost the most seemed to be the most determined to seize the day.  It was inspiring and encouraging;  life can be difficult so that's all t…

Changes and Chances

This week, I made the trip to the revenue office to get a handicap placard for our car.  Lacy Alan is having trouble walking;  when we take him places, we need to be able to park close to the door.
Our son is falling now, too.  His knees are scraped and red.  He insists he is ok, and he probably is, but... he is falling.  It won't get better.

For a little while, we coast along, and everything is status quo, but the constant worry is there.  Someone asked us how Lacy was doing and Kenny fired back "Compared to what?"  I think he regretted the outburst immediately.  I've had the unfortunate reaction of bursting into tears when someone asked me the same question.  Folks are trying to let us know we are on their minds, and I hope that they will forgive the occasional curt response or flood of tears.

Although we are dealing with unwelcome changes, we try to take advantage of the chances we are given to make every day count.  This first week off from school has been a good…

Palliative Care

I've talked to several people over the past few months about palliative and hospice care.   I find that the folks I talk with have rarely heard of palliative care;  I get lots of "can you spell that?" and some confused looks.

Palliative care is a great resource for anyone with a potentially life-limiting illness.  To access palliative care, you don't need to be in the final stages of an illness.  While many people who utilize palliative care do have a life-limiting illness, this need not be the case to get palliative care.
Palliative care can begin at any time during the course of an illness and is not dependent on your prognosis.  A patient in palliative care can continue to receive curative treatments if that is appropriate for your situation.  
We signed Lacy up for palliative care last year, just before Thanksgiving.  The great thing about palliative care is that the physicians who provide this service work with your doctor and can help to coordinate care among …

It's all in how you look at it...

Sunday we visited our boy as usual.  I made the mistake of ordering a lemonade for him with ice...he does not like ice in his drinks...and he was infuriated.

Earlier last week, I had bought Lacy Alan a couple of pairs of jeans with elastic waists.  He just can't navigate a button and belt.  While I was at it, I bought some fun t-shirts for summer and other items.   We had dropped his new clothes in his apartment.

His anger over the ice in his drink became the catalyst for the events that followed.  His new clothing ended up in the trash can, and he slammed and locked his apartment door behind him so that we couldn't get in.  His caregiver unlocked the door for us.

I talked with him about his clothing.  "Don't you like your new clothes?" I asked.

Glaring at me he snarled, "I don't have to answer that."

He got up and stomped past me to the garden, where he turned and began to talk to the tree there.

"Officer, do you see this woman?  She is vand…

HD Awareness Month

In the 1950's, folk singer, Woody Guthrie was on what would be a final series of road trips, singing his songs and sharing his poems and writings.  He began to behave erratically.  His moods were unpredictable.  After coming home to New York, Woody was hospitalized several times, diagnosed and treated for alcoholism and schizophrenia, but he just kept getting worse and his physical condition worsened.  Finally, in 1954, Woody was picked up for vagrancy in New Jersey and admitted to Greystone Psychiatric Hospital.  It was there that the correct diagnosis was made - Huntington's Disease.

His second wife, Marjorie, visited and cared for him until his death in 1967.  Through her efforts to fund research toward a cure for HD, the Huntington's Disease Society of America was born.  This organization has done so much for patients and families in the intervening years.

Nearly 40 years later, advocates for HD patients and families are fighting another battle.  Because of the outdat…

The Love Chapter

Sunday mornings are difficult days for me.  Kenny and I go to church, and participate in worship.  It is in those times of meaningful connection in the presence of others that I am most vulnerable.

If I allow myself to really hear and think about the words of the songs, or connect personally with the pastor's message, I can lose my composure.  So I try to listen as from another room.  I can intellectually connect, but letting this get to my heart is another thing.  I save that connection for home and take time to mull over the scripture and message for the week.

This Sunday, though, I had a massive headache.  All I could do was sit with my eyes closed - which means I nearly dosed off a couple of times.  However, I did hear one of the scripture passages for the day, and it was one that has stayed with me this week.

We used to call it the "love chapter":  I Corinthians 13.  Before marriage, child, adult struggles, it seemed like the feel good passage of the Bible.  This w…

Little Glimpses of God

This weekend was full of lots of activity.  Our niece and her children were with us, providing fun and excitement that we always enjoy.  We adopted a little dog from a shelter in a nearby state (more on that later) and we went to see our Lacy Alan as usual on Sunday.

How fun it was to play with the children, help our niece paint her new office, and spend time together.  They always bring a smile to our faces and joy to our lives.

A week ago, as I was looking through the list of adoptable dogs in our area, I came upon Violet - a beautiful little French Bulldog missing a front leg, needing a home.  She tugged at my heartstrings, and after our application and a few phone calls, I drove the 45 minutes to get her and bring her home.  She's quickly becoming "our" dog, and her little eyes are beginning to light up when we walk in the door.

On Sunday, we went to see Lacy Alan as usual.  Walking into his apartment, I was met at the door with a smile.  "Hi, Mom!"  he gr…