"All that is gold does not glitter, not all those who wander are lost; the old that is strong does not wither, deep roots are not reached by the frost."

Sunday, May 2, 2010


Last week my dad was released from Hospice. If he were of sound mind, that would be a good thing. He's gained seven pounds and looks healthier than he did in January. In fact, lose the wheelchair, rethink the wardrobe, he could still be the guy living on Wedgewood Drive reading the newspaper and planning trips to the Art Institute or Field Museum. I should not complain, but I still do.

For the past two and a half months, I didn't do anything stressful except visit Dad at Bickford and be his daughter. Celia, his caseworker and Hospice nurse, took care of everything else: provided a hospital bed and wheelchair that fit my father's six-foot frame, scheduled two showers a week and made sure he got them even when he was combative and verbally abusive, ordered all personal supplies, filled his prescriptions, paid a few bills, relieved a little guilt, and gave me hope. The hope being that my father was leaving this lifetime (soon) with a hint of grace and a shred of dignity. That's an awful thing to say, but I'm a little warped these days.

I'm currently back to micro-managing Dad's life. It's nothing I can't handle. I am lately on the phone during my lunch breaks hounding the idiots at Medicare to cover the cost of his wheelchair, gel pad, fall pads, recliner and bed alarms. I'm frequently online ordering wipes and dipes that are shockingly expensive from websites that are not user friendly, and I'm back to dealing with the VA for affordable medication to control Dad's ill-temper. The cold, ugly hospital bed is no longer necessary, so purchasing a new twin bed that was just right (not too high, not too low), with a comfortable mattress (not too soft, not too firm), that did not look like it belonged in a three-year old's bedroom, took some time.

Unfortunately, the old worries are creeping back into my thoughts. Realistically, Dad will continue to decline over the summer and his quality of life will, again, worsen. His nightmare continues and I will bear witness. This isn't over; I best not delete Hospice from my phone. I have been grieving for five and a half years and my nerve endings are starting to fray. My old friend insomnia visits nightly as I crunch numbers in my head. $6500 a month times 12 divided by meager social security minus long-term-care insurance plus a dwindling IRA to the power of Y.

Meanwhile, my poor father is akin to a potted plant perched in a windowsill - confined and dependent. One day, withering and dying in the sun, the next, springing back to life and staying rooted. He is moth eaten, but programmed to survive. Me, I'm floating. I am suspended in the rickety basket of a hot air balloon with no control over its direction. The view is huge, panoramic and terrifying. Should I enjoy the ride or worry about the landing? The answer is yes.


  1. Wow. I have such an easy life. So grateful today for the update on you and your dad - I think about you both so often since I discovered your blog. THANK YOU FOR SHARING, and your writing is so beautiful. You always get me with the last line...

    Love you. Hang in there.

  2. Thank you for sharing your experiences. I'm thankful to have finally found blogs about families dealing with Alzheimer's. I'm doing my best to write about my Mom's journey (we're three years in so far).