Sunday, March 1, 2015

At least it’s warm in Hell

Over the last couple of weeks, we’ve seen many days with snow, single digit temperatures and even below zero temps and wind chills of -20, so the heat of hell is somewhat appealing right now.  Although I’m choosing to keep as positive an outlook as I can, caregiving and everything affected by it, has become difficult and there are times I feel like hell would be an upgrade.  Alzheimer’s has tested my temperament and angered me countless times.  I’ve been mad at me, mad at Marcia, mad at my kids, friends, employer and even God when it’s Alzheimer’s I’m really angry with.  When I think how bad things are on any given “today”, I know the future, with continued progression, will never be as good as it is today.  I look back on two years ago when I had reason to feel bad about our situation, and wish for things to be that “bad” again.  My life has been blessed in many ways and I can’t really compare it to Hell, but I am angry.  Angry because:

·         Marcia is “forcing me to dance”.  She used to be able to sit in front of the TV when I was working at home or doing normal around-the-house stuff.  Well Marcia really doesn’t watch TV anymore and it’s becoming harder and harder to find things that interest her.  I’ve read and been told how good music is for those with Alzheimer’s and while Marcia has always loved music, she really responds to it now and she dances constantly.  Of course she doesn’t force me to dance, but I dance with her often even though I hate to dance.  But I love seeing her smile and laugh (at me???), and at least (almost) no one else is watching!!  My son has walked in on us several times.  The trauma I’ve put this boy through….  Marcia used to be a great dancer, but no more.  Her motor skill deterioration limits what she can do and she’s probably a tenth the dancer she used to be.  Of course this still makes her twice as good as me!  If this wasn’t hell-like, it wouldn’t be dancing that interests her, it would be back-to-back episodes of Sports Center, or movies like Shawshank Redemption or Get Smart re-runs.  No such luck…  Once “The Bump” went out of style in the 70’s, I had no dance moves left.  I think I’m going to teach myself how to Moon Walk soon. 

·         The difficult moments are increasing in frequency and I’m feeling several weeks of cumulative frustration, anger and sadness.  My last post talked about Marcia’s progression, which is at the core of today’s rant.  I’m aware that if I sat back and really thought about my situation, I would be depressed.  I’ve lost my wife, my job and career and any semblance of a social life.  Sleep, exercise and spontaneity are not where I wish they were.  Probably most regrettable, and something I won’t get back is this:  I’m not able to spend as much time with my kids as I think is necessary and therefore, I’m missing chunks of their teenage years.  Honestly, I am less stressed when they aren’t around Marcia.  Weekends are hard because I just can’t entertain Marcia and get all the things done that need to be done.  Looking at the bright side of things, I have had almost 20 good years with Marcia, more than 30 years with two great companies, many wonderful social memories and two bright, healthy and active kids that have been such a joy.

·         Marcia is showing cracks in her strong façade.  She has been incredibly brave, courageous and full of grace since her Alzheimer’s diagnosis.  She has every right to be angry and depressed, but has only recently let it get the best of her.  I rarely saw her cry during the four years since her diagnosis, but over the last 3 months, tears have been almost a daily event.  Sometimes it’s not just crying, it’s hysterical crying and at times, it’s best described as a tantrum.  And she can’t tell me why she’s crying.  She tries to tell me, but she just can’t get the words out.  She’s frustrated and has tried to hit me on a couple of occasions.  Not violent strikes, but more like “you-just-don’t-get-it” jabs.   I just don’t know what to do to help her.  Marcia could be frustrated due to constant pain.  It’s not far-fetched that arthritis, her neck pain or spinal stenosis is causing pain.  She also has headaches almost every day.  Depression could easily be the reason for her tears, which is understandable and perhaps long overdue.  She can’t communicate, has a hard time walking and has vision problems.  And that’s just what I know about.  I saw a film clip recently where an ABC news correspondent spent 12 minutes simulating the life of an Alzheimer’s patient.  I was unaware that many Alzheimer’s sufferers report hearing a constant noise.  This noise was simulated in the 12 minute clip.  It drove the news correspondent crazy and distracted her from pretty simple tasks.  In just 12 minutes.  Maybe Marcia doesn’t have headaches.  She holds her head in both of her hands almost every day and I wonder if it’s because she hears a constant noise too.  I can’t imagine what she’s truly going through, but seeing her cry so often is almost more than I can take.

·         And I’m angry about how Alzheimer’s is portrayed to the public, even by expert organizations like the Alzheimer’s association.  I’m angry that months ago several politicians proposed investing $6 billion dollars on Ebola research after one American death and 4 were reported infected.  I’m not down on Ebola as I understand the potential impact Ebola could have if it spread here in the US.  It’s just that it’s more than has been spent on Alzheimer’s disease in a decade while millions have died and more than 5million Americans are living with the disease today, from which not one person has ever been cured.  Fears of Ebola, or Aids or terrorist attacks get action.  “Memory loss” in the elderly just doesn’t make the front page. Even the movie “Still Alice”, where the trailer shows the daughter asking Alice what it’s like and she says some days are good and some days I just can’t find myself, or “I’m not suffering, I’m struggling”.  That’s soft selling the reality that most of us living with this @#$%^  disease face.  I’ve mentioned above how Marcia is suffering.  I am suffering and so are my kids.  Marcia’s brain is wasting away and she knows it and I watch it happen daily while I’m isolated from the rest of the world.

While angry and frustrated, I am one of the lucky ones.  I don’t have some of the financial challenges so many others face, and I have a good support system from friends and family.  So many families have to sell their homes to pay for health care and prescription drugs and even more report being abandoned by friends and family (next post will talk about this).  Those living with Alzheimer’s and those that will be living with Alzheimer’s need to have hope.  Julianne Moore’s Oscar winning performance as a woman with early onset Alzheimer’s and her wonderful acceptance speech are helping raise awareness for this disease.  And Glen Campbell’s song about living with Alzheimer’s, “I’m Not Gonna Miss You” was performed by Tim McGraw, and while the song did not win an Oscar, it was one of the nominees.  While this post has a clear angry overtone, the Oscars night was encouraging because so much awareness came out of that night and subsequent interviews.  For that I am encouraged, not for Marcia, but for the next generation. 

I’m just sick of Alzheimer’s, and so tired.

1 comment:

  1. Dear Mike,

    My heart shares your pain, a fellow caregiver, although not with Alzheimer's, but with cancer. The diseases are very different, and my goal is not to compare, but to let you know that I have some idea of the hardship of caring for someone at home realizing that without some miracle, things only get worse. There were times like being alone at home in the middle of the night in a snowstorm when my sister was in severe pain and calling hospice to learn just how much morphine I could give; staying up day and night after night because private aides couldn't make it through the snow, or I just couldn't find someone that suited my sister well enough to result in a peaceful night; sending some friends and family away because I didn't have an ounce of strength to show hospitality; trying to keep up with my full -time job from my home office (my boss was wonderful and let me scale back, but I still put in time because I would need the job after...).

    At one point, as I wept by my sister's bed and apologized to her for being so tired and cranky, she mustered strength deep within her spirit (even though she was mostly not conscious at that point) to say in a surprisingly lucid voice "you can do all things through Christ who strengthens you." That was my big sister, always laying me at the feet of Christ... and she was the one dying. I can't tell you how many times we prayed Psalm 27 together or I read it to her when she was not lucid, "hear O Lord, when I cry aloud; be gracious to me and answer me! You have said, "seek" my face. My heart says to you, Your face do I seek. Hide not your face from me." Although often there wasn't physical relief, we knew, (and in her spirit she knew even when she was not lucid) that the Lord was with us somehow. I would have liked more tangible, immediate evidence of His presence ... angels, harps, instance healing, the perfect private aide.... Yet, long ago, when this all started my sister and I committed to "just trust Him" no matter what. We were willing to follow the path He had for us.

    I'm on the other side of it now, a year has passed, but you can see the experience is still very close and real. It was hard then, and it's still hard now because we love deeply. It's clear that you love your wife and kids. God bless you for it and all that you do. The Lord is with you. The statistics of Alzheimer's are overwhelming, but you are not a statistic. The Lord knows every hair on your head and counts every tear you shed.

    Caregiving is a boot camp for faith. Faith is learned when we can't see ahead, and don't have our own strength to fix things. I had so many questions then and still do now looking ahead to a very different future than what I had in mind. But I will not lose hope. I may be weary and full of grief, but I will trust Him, no matter what. My hope comes from God.

    Please know that many, like myself are praying for you, reminding the Lord of your burden and asking Him to send His grace your way... and also to Marcia and your children whom you love and He loves even more.

    A fellow caregiver held in the arms of Christ.