Tuesday, January 24, 2012

“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 caregiving. 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

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