Wednesday, March 11, 2015

I'm Getting There

When the movie, Still Alice, was released recently I wasn't sure I could watch it. In the last few weeks, however, I found I really wanted to see how this story was portrayed on the big screen.  I was thrilled that Julianne Moore won an Oscar playing this role because we need more awareness of Early Onset AD.  The plot really hits home when a 50 year old college professor develops Early Onset Alzheimer's Disease. The events of the movie certainly bore some similarities to Billy's experiences - getting lost in a place you've lived and worked for decades, asking the same question over and over again without realizing he had asked it two minutes before, losing nouns when making sentences, ordering whatever I ordered in a restaurant because he no longer remembered what he liked...the list goes on. 

In the movie, the Howards are an affluent family - Alice and her husband, John, are recognized college professors at Columbia University. They have three adult children - one in law school, one in med school, and the youngest is a struggling actress. While EOAD is no respecter of class, most of the people I have met who are dealing with this disease are middle class folks who worry a great deal about the financial consequences of this disease.  We were a two income family, and losing one of those incomes was major for us. Alice and John don't seem to miss a beat in paying for their children's educations and maintaining their second home on the Cape. I know the movie didn't have the time to show the entire scope of the disease, but I wonder if it leaves people feeling that a person is diagnosed and ends up being mostly forgetful and confused and sad. The movie is well-written, well-acted, and well-meaning.  It's a beginning, but there is so much more to the story. 

I'm out of school for Spring Break this week which allows me to spend more time with Billy. I've gone to see him at various times which is nice, too.  I was pretty low after seeing him Monday and Tuesday because he was so flat and sleepy. He hardly opened his eyes either day, but today was better. He was wide eyed and focused on me a few times.  He smiled at me, and that helps so much. We had Billy's three month care plan meeting today, and it offered another dose of reality for me. In the last month Billy has lost 6 more pounds - 8 pounds lost the month before. At 6'1" he weighs 154 pounds with a BMI of 20.3.  If the BMI drops to 18.5 he is considered underweight, and the hospice nurse wanted to let me know that we could do a feeding tube.  I have strong feelings against a feeding tube or an IV for a loved one dying. The natural process of dying involves loss of appetite and thirst. I recently watched a video by a hospice nurse who describes the labor of dying.  It confirmed what I had read and heard before, and it helped me understand the process better. Thank you, Kathy Lowrey for sending me the link.

In these many years of EOAD, I've held on to Billy as tight as possible. Alzheimer's Disease is fatal 100% of the time. Some progress slowly - some quickly, and some have major changes followed by plateaus.  That is how I would describe Billy's journey.  At this time, it is clear to me that the end is coming much faster than I am ready, but I'm getting there. It hurts deeply to see Billy so weak and frail, eyes searching for something, hands reaching for something, his body rigid and tremors taking over at times.  Then he sees me, makes a connection and smiles. That tells me he's not ready to go just yet, or Jesus isn't ready for him, but when the hand reaches down and takes him home, my heart will rejoice that this is over for him. Don't mistake that joy for lack of grief or sadness.  I miss Billy every single day, and when I can no longer kiss his head or hold his hand, a part of me will die, too. But to know that he is free and whole - that's worth my dying a little. 

Sunday, February 15, 2015

Thirteen years and counting...

Someone asked me recently how long Billy has had Alzheimer's Disease.  It's always hard to answer that because gaining that diagnosis seems to be a process.  I first noticed that something was wrong in 2001 after Shelley had graduated from high school. Billy was 45.  We were having major issues with our son, Andrew, and we had many discussions about those issues.  We would spend hours arriving at a decision on the consequences we would put in place for Andrew, and the next day when I would mention that decision to Billy he seemed very surprised and sometimes was angry that I had not consulted him first.  Billy was diagnosed with adult ADHD and given meds for that.  He probably did have ADHD, but the meds did not improve his memory. After that the doctors decided he was depressed, and he probably was.  He knew something was wrong but no one could tell him what it was.  From there his diagnosis became Mild Cognitive Impairment (MCI), and I assure you that it never seemed mild to me.  When he was 51, he was diagnosed with Alzheimer's Disease.  It was not like a blood test finally showed that he had it, or he finally had all the criteria on a list.  I remember sitting in the neurologist's office and talking to him about Billy's struggles at work.  I looked at him and said, "What do you think is going on with him?"  He responded that he felt that Billy had Alzheimer's Disease.  

Here we are thirteen years later, and we have no doubt about that diagnosis of Early (Young) Onset Alzheimer's Disease. For many years Billy looked like any of his peers, and in social situations he seemed completely normal.  But as his brain became more and more ravaged with the plaques and tangles, he could no longer function normally, and now the physical repercussions of the disease are astounding.  When Billy was diagnosed he weighed about 250 pounds - a bit too heavy for his 6'1" frame.  On February 4th of this year, he weighed 160 pounds - way too little for his ravaged frame. Billy's fingers were alway chubby, and his wedding ring was size 12.  Now I see his fingers and hardly recognize them as his because they are so thin.  His body is rigid and one leg crosses the other at the ankles. Many days he has tremors that are uncontrollable, but some days he doesn't.  He raises his arms and hands as though he is batting something away. When he recognizes me and smiles, he reaches toward me to touch my face. I try to lean closer, so he can touch me, but I have to move with caution because he has little control over his movements and may hit me in the chin.  His day nurse tells me to bob and weave!  Billy has been eating pretty well for the most part, but the last few times I've fed him, he lost interest before finishing.  I don't think he can see what he is eating which is a blessing because certain foods look really nasty when they are pureed.   He never liked spinach, and I see no need to try to make him eat it now.  

I struggle to find the positive in Billy's condition right now. This disease is evil and takes a person little by little until a rigid shell is left. I am thankful that his smile is still there when he recognizes us. His love is conveyed through his eyes when he smiles, and when I feel really sad about the whole mess, it gets me through.  

On the homefront, Mom is doing remarkably well for a person who was very near death on more than one occasion in the last several months.  What a blessing it's been for her to feel well enough to get out of bed each day.  She even went with me to Sonic yesterday for her beloved limeade.  She was wiped out when we got home, but she got out of the house for a bit at least.  I am thankful for every day I have with her and every week I get to watch Downton Abbey with her. It's the little things that feel like huge blessings from God.

A friend recently reminded me of this beautiful promise from God. 
"Behold, I am making all things new."  Revelation 21:5

Sunday, January 4, 2015

Well, Hello 2015...Give me whatcha got!

I have no desire to review the events of 2014 although many were good. Instead I will share the stuff of the last two weeks. One of the perks of laboring in public education is the holiday schedule, and Christmas holiday is nearly always two weeks. We hang on by our fingernails during the three weeks between Thanksgiving break and the beloved hiatus of December.  By the time it arrives, I have a mental list of books I want to read, tv shows I want to catch up on, recipes I want to try and the daily naps I plan to take. Christmas holidays of 2014 were different. I still had the lists of books and shows, etc., but I also knew this would be our first Christmas without Dad and our last Christmas with Mom.  It is the second Christmas we have not brought Billy home for our family celebration.  During these two weeks, I have not read a book (not even one!), I have caught up on one show, and I've tried no new recipes.  However, I have spent a great deal of time with my mom. 

I listed all the highlights and lowlights of several months in a previous post, so I won't belabor those. We had a nice Thanksgiving and Christmas. Both were rather low key, but we all felt good about them afterwards.  I spent a great deal of time with Mom, and I am so grateful for that. We have a good relationship, and God has granted me a calmness that allows us to discuss her upcoming death, what she wants and absolutely does not want in the way of a funeral, and so many other things that I never dreamed we would have an opportunity to discuss.   The first week of these two I was able to take Mom to radiation treatments meant to shrink her tumor and lessen her pain. The trips to Texas Oncology were near torture for Mom because of her pain. 

Early Friday morning after Christmas, I heard Mom calling me.  I found her face down on the bathroom tile where she had fallen.  I had checked on her a few hours earlier, and she was okay.  I couldn't get her up and called my brother in law to come help me.  We were not successful, so I called 911 - again.  She was admitted with a broken nose, severe dehydration and low blood count.  They pumped her with fluid and gave her some blood over the course of two days. During that time, Mom decided she would not have any more radiation, and she wanted to go home with hospice.  That has been the theme of this week. I was delighted to have Billy and Kathy Futrell here for one night last weekend. I am so grateful for their friendship and support. Billy and my brother in law helped move my bed, and we have the master bedroom set up with a hospital bed and all the equipment Mom needs. We've met with the nurse, had two visits from the aide who will help Mom three times weekly, heard from the social worker, and met with the chaplain. We've also arranged to have an aide come daily (not part of hospice), so that I can return to work for now. God has provided what we need, and I am so grateful for having the time to handle all the details. Mom misses Dad so much, and she is ready to be with him again and really ready to be with Jesus. 

While I cherish the time with my mom, I feel like I've missed out on some time with Billy. It's hard to catch him awake, so meal time is usually best.  I know I'll find ways to see him - it will just take some time. He seems to be stable as I've not seen any big declines recently.  I'm grateful for that. 

I look forward to all that 2015 holds and all that God does in our lives. Happy New Year to all!   

Oh give thanks to the Lord, for he is good, for his steadfast love endures forever! - 
Psalm 107:1