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From the Trenches
Individual end-stage accounts by caregivers who have
lost a loved one to a brain tumor

    Scroll down or click on the button next to a name below to read these firsthand care-
    giver stories. We all hope that reading these personal accounts will help you to feel
    better prepared for the work at hand...and to feel less alone.

    If you would like to honor your loved one and help others by contributing your own
    experiences after journey's end, please contact Diane at
brainhospice@earthlink.net.
Henry Mech (72), gbm 3/99-2/27/00---read account below
Paul M. (54), gbm 12/21/00-5/29/02
Russell Loree Patrick (65), oligoastrocytoma 5/14/01-3/1/02
Kevin Joseph Mullin (17), anaplastic astrocytoma 12/14/00-8/9/01
Carol Eikanas (38), astrocytoma ii 1/97 (diagnosis changed to oligodendroglioma ii 7/99)-1/1/03
Rita Marie Dunnigan Katnich (74), gbm 6/00-11/2/00
Kristen Kenzig (10), pontine brain stem glioma, died 9/97
Kristen's final day
Special messages "after"
John May (61), gbm 9/03-1/15/05
Paul Davis (52), gbm 7/97-4/11/99
John Kenny (66), gbm 5/03-8/26/04
Henry Mech (72), diagnosed with gbm in March 1999; lost his battle on February 27, 2000; written by his daughter, Wanda Campbell

February 7
Dad has a grand mal seizure while sitting at the kitchen table. We call 911. He is kept overnight at the hospital. The emergency room performs a CAT scan but no MRI, saying there is no difference in tumor size. Hospice is called in.

February 8-23
Dad becomes weaker. Loses more vision in the left eye. He is now unable to feed, bathe, dress, or do anything for himself. We are still able to move him from bed to wheelchair to couch. He is having extreme difficulty finding words. Will repeat the same word over and over. Sunset syndrome (is awake most of the night); will not let Mom out of his sight. Does not always recognize us. Is seeing people from his past who have died. Sees his mother in the bedroom. She died in 1941.

February 23
evening:
Dad does not want to take his medication. He's on all liquids and suppositories at this point. He eats an evening meal of soup, an omelette, and some pudding.

nighttime: Dad is grabbing Mom by the arm every few minutes. Cannot tell us that he is in pain. Hospice nurse comes and says he is just fidgeting.

February 24
Hospice chaplain comes to the house, says Dad is in pain, recommends a different nurse. Nurse comes by and prescribes liquid morphine. By 5:00 p.m., Dad is literally coming off the bed every few minutes as pain grips his body. No longer speaking. I put Mom to bed, and my husband and I stay with Dad. It takes until 4:00 a.m. for the morphine to take effect, and then he finally sleeps.

February 25
Hospice comes to the house. They call me at work: the end is near. I rush home, and Dad is now in a coma. We continue to talk to him, and our priest comes to visit. Dad is experiencing heavy breathing and gurgle. Last kidney function is at approximately 3:00 p.m. My sister and brother-in-law show up. Dad opens his eyes (very glazed) and says, "Hi."

February 26
Dad is still in a coma. He is in my home, in our bedroom, and surrounded by those who love him. He does not communicate but does not seem to be in pain. We take turns talking to him privately. About 4:00 p.m., Mom lays down with him (we are able to keep him comfortable in a queen-sized bed) and sings to him for a few hours. Mom falls asleep with Dad. We allow them this private time and go into the kitchen to eat. My brother-in-law and I are still administering meds as needed. The gurgling is deeper. More time between breaths.

February 27
12:00 a.m.
We quietly go back to the bedroom and surround the bed, whispering about all the good times. There are seven of us, including Mom, but she is still sleeping. We cry and laugh.

12:10 a.m.
I tell my sister that we have to wake Mom. Dad is still comatose, but I can "feel" a change. We give it 5 more minutes and wake Mom. She goes to the bathroom to wash her face, comes out, and leads us in prayer and then starts singing hymns to Dad. (Dad loved to hear Mom sing.)

12:25 a.m.
Mom stops singing. Dad opens his eyes (very clear and very blue). The lines of pain are literally disappearing from his face. He looks incredibly beautiful, almost as if there is a golden light shining on him. We all sit on the bed (lucky it didn't collapse) and are telling him how much we love him. All of us are touching him. He moves his eyes around the bed twice, starting with Mom, looks at each of us, goes back to Mom. Mom tells him that it is time to go to his mother. Dad closes his eyes and mouth and quietly passes away. It is so peaceful that Mom doesn't realize he is gone until I actually say, "Mom, he's gone." I look at the clock and it is 12:36 a.m.

I sincerely hope this helps someone. The dying process was very hard on us because of the first day of pain. I recommend that caregivers have pain medication available before it's necessary, and if you don't trust what the hospice nurse says, ask for another nurse. Looking back, I wish we had done that on February 23rd. Dad's passing was actually mild compared to some others. I had never seen anyone die before, but watching Dad, I knew there was nothing to be afraid of.
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