"Asking for Help"

         I hate asking for help. I’ve tried to figure out why, but it’s like peeling an onion. Just when I think I understand my motivations on one level, I reveal another layer. Seeking help makes me feel inadequate. I should handle each and every situation life dishes out with confidence. When I can’t, I feel disoriented and depressed. I realized recently that I differentiate between asking for aid and delegating responsibility. In one, I need someone else to take care of me (or my duties) in some way. I want and need to completely drop control. With the other, I still maintain some level of influence.  

So, if I reach the point where I’m saying, “I can’t do this any longer,” it means I’ve hit rock bottom. I’m Wile E. Coyote plummeting over the cliff, holding the little useless “HELP!” sign in the air right before splatting on the rocky desert floor. Another onion layer reveals that a part of me resents having to ask for help. Shouldn’t those around me be aware enough to know the cliff edge looms? Shouldn’t they run some kind of interference before I find myself peddling in the air? Shouldn’t they volunteer to step in and thwart the Road Runner before he misdirects me into my downfall? Yes. I expect the people around me to read my mind, notice my body language, listen to how I say something, not just what I say. My husband, thank goodness, mastered the nuances of Liz Language years ago. However, he can only do so much by way of helping—he has a full-time job, after all.

My mother’s condition worsens in subtle ways, making it difficult to ask for help because I don’t know what I need. Many people with Huntington’s disease suffer from mood disorders. For my mother, anxiety crept into her daily routine. Later, depression made infrequent and unexpected visits. Eventually, these two moods dominated her days unless she took medication. Lately, other changes in Mom’s personality have begun to surface. Each one signals to me that her HD continues to progress. Medications may control or mask symptoms, but the underlying reality is that she’ll never get better. She’ll only grow worse.

In recent weeks, irritability slips into the room unnoticed. If I don’t smile as I help Mom get into or out of her wheelchair, if fatigue or frustration tinges my tone of voice as I try to figure out what she wants, if my temper flares, then Mom responds with a verbal cut edged with cruelty that I’ve never heard from her. If my mood is dark, she becomes paranoiac and worries that I won’t help her.

I’ve resorted to asking her doctors for help. It’s rare that I request an adjustment to her medications, and usually it’s to help her deal with the anxiety and depression. Today, though, I found myself complaining to Mom’s internist that she’s not sleeping. Her insomnia started with one or two wakeful nights a week, but has turned into four or five nights where she sleeps only two or three hours. She usually doesn’t “catch up” on her sleep by napping the next day, so we all run on a deficit. Not good for anyone’s moods. Of course, the doctor didn’t miss a beat. He instructed me on which medication to increase at night before Mom goes to bed. Nothing in his response made me feel inadequate for asking, or guilty for wanting peaceful nights again.

Copyright 2012 Elizabeth Abrams Chapman

"A Caregiver's Pity Party"

I’ve struggled with a foul mood for a couple of weeks now. My patience evaporates quickly, dissipating in a haze of grumpiness that dissolves into weepiness if I’m not careful. I don’t know why this funk has fallen into my life and darkened my aura, but I hope it leaves soon.

         My son suspects that my new thyroid medication has kicked in and slayed the fatigue that flagged my steps. He theorizes that I felt badly, but simply didn’t realize it. Now that I have energy again, I’m hypersensitive to all the things I cannot do because I care for Mom. His ideas made me stop and think, and he’s correct. Fatigue insinuates itself into your life in gradual increments so sneakily that you’ve shifted into slow motion without realizing it. Spending my days with Mom watching reruns on television didn’t bother me because I didn’t have energy to do much more. Now that I’m feeling recharged, I resent being housebound. I feel anger because I can’t just take off on a walk or rejoin the gym. I’m frustrated because I’d love to dash to the mall or spend an afternoon at a museum. It irritates me that I’ve missed important events like Christmas parties, weddings, and funerals.

         I get annoyed when some well-wishing friend or family member makes the “you need to take care of yourself, too” declaration, but never makes the offer to give me the break I so desperately need. Hiring help becomes a quagmire, too. Mom doesn’t like having one of us help her with her toilet, so a stranger helping becomes even more embarrassing for her. Also, I’d have to spend some time with Mom and the respite caregiver together to make certain Mom felt comfortable with a new person—change isn’t always an easy thing for someone with Huntington’s disease. And no one talks about the cost of this kind of service! If David and I want to leave the house for three hours (dinner, a little shopping or a movie), it will cost $60.00 before we even step out the door for the respite “sitter” because the rate is $20.00 per hour if you’re gone for three or more hours. If you’re gone for less time, the rate bumps up to $25.00 per hour. That means if we wanted to escape once a week during this next year, it would cost us $3120.00.

         And so my mood grows darker. Unless a family giving care has an extended network of other family and friends available to help, you become trapped. It doesn’t matter how much you love the person under your care, eventually the demands pull you down and under.

         In our case, we are fortunate because my mother’s the only family member displaying the symptoms of Huntington’s disease. In many families, Huntington’s disease strikes multiple members across several generations at approximately the same time. That means a person could be tending to a parent, spouse and child at the same time. Often family members who don’t inherit HD feel a type of survivor’s guilt that paralyzes them and prevents them from taking an active role in the unending demands of care-giving. With some families, nursing homes provide the role of primary caregiver. However, finding nursing homes that will take an HD patient is difficult. Finding nursing homes that can handle HD patients with effective care is almost impossible. That means that family members spend many hours after work and on weekends visiting their HD stricken loved ones. When Mom lived in assisted living, I visited her daily for three or four hours, and that was before her condition worsened. Had we moved her into a nursing home instead of our personal home, most of my days would still be given to her care.

         And so today, I’m taking time out for a pity party. I’m letting the kettle boil and bubble over. Maybe all the negative energy I’m generating will evaporate in the steam and leave me refreshed and renewed.    

Mom's last cabin visit on Sept. 2011 lasted only 4 hours.
Our cabin in Leakey is the one retreat David and I have!

Copyright 2012 Elizabeth Abrams Chapman

"Sick Days"

          Yesterday an intestinal bug hit me—the same vicious critter that downed my mother the day before no doubt jumped ship and decided to cruise through my innards. This mean little virus snuck up suddenly and without any forewarning. No sense of queasiness, no hint of a fever starting, no little aches and pains. One moment I energetically tackled the chores remaining on my “TO DO” list, and the next I succumbed to this humbling sickness. When David and Paul showed up, it was to find me curled on the couch under a blanket with the warning, “Stay away! I’m sick.”

         Today, I suffer from muscle aches and head spinning nausea. Mom complained of similar symptoms and retreated to the warmth of her bed after David gave her a bath (my lesson definitely learned). I’ve filled my new teapot with water, dumped dinner into a slow cooker, and retreated to my room wrapped in a fleece robe and extra blanket. When the whistle calls, I’ll brew a hot cuppa tea in the hopes that its soothing heat will ease my discomfort.

         Illness doesn’t hit our household very often. I know that sounds strange since Mom fights Huntington’s disease daily. However, the only other sickness that plagues my mother centers on the reactions her sinuses have to changes in barometric pressure. Send a front our way, and she’ll feel it a day or two in advance. Benadryl either knocks out the sinus flair-up, or it wipes her out so she sleeps until the front passes through town. So, dealing with other ailments isn’t a common occurrence around here.

         Fortune follows us in that the few times I’ve fallen infirm, it’s been a weekend! David steps in and waits upon the entire household. I haven’t suffered for more than a day or two at a time and have returned to my normal routine by Monday. On the few times I’ve felt ill during the week, I’ve relied upon our son, Paul, to rescue me. However, I cannot call him today because he, too, fell sick to a cold virus a few days ago. No way do we want to mix these two creatures! No one would survive a full body assault.

         So as I sit hunched over the keyboard, I realize I need to find some kind of “back-up” caregiver for days like today.  I probably should have lined up a care service months ago, but I’m the Forever Optimist and gambled that the plague would miss our house. Silly me!

Copyright 2012 Elizabeth Abrams Chapman