Al and Mary met at an elementary school where he was the building supervisor and Mary was a teacher. They married in 2009. Al worked year-round keeping the school clean and maintained. He enjoyed riding his Harley, going four-wheeling and fishing. Often, he could be found visiting neighbors and traveling to see his family and friends. Unfortunately, Al’s health changed.
Three years ago, Al needed to have back surgery because of crippling pain. The surgery was a huge success but being under anesthesia for many hours triggered the issue he’s dealing with today, pulmonary hypertension. The blood flowing into his lungs to get oxygen is fighting against a firehose of pressure which means that his body cannot get enough oxygen. Al has seen pulmonologists, taken very high doses of prednisone to no avail, and has been on oxygen for the last two years.
Al has also had congestive heart failure. Last spring he was hospitalized five times for internal bleeding, low hemoglobin, and diuresis (getting rid of 20 pounds of water weight). He missed his daughter’s wedding and his son’s college graduation. His nurse practitioner suggested that we consider hospice since his heart and lung conditions have no cure and he had been through enough.
After a lot of talking and tears, we decided to choose hospice. Last August, Al got to have the peace of mind knowing that he wouldn’t have to continue going to an endless stream of doctor appointments. Hospice involves a nurse coming to our house once a week for an hour to check on him and an aide three times a week to help him with daily care. When Mary went back to work as an elementary school teacher in September, Al was able to be alone during the day for several months. Unfortunately, with Al’s increasing morphine dose (to help with breathing) and disease progression, Al became very unsteady and confused and was no longer able to be alone.
In January of 2017, the hospice nurse said that Al needed 24/7 supervision. Mary had been struggling working full-time and trying to provide for Al’s medical needs. She had to go on Family Medical Leave and taught two days a week. Thinking she only needed overnight care the nights before she’d work, Mary tried to take care of Al the rest of the week when she wasn’t working. That lasted two weeks and Mary could no longer handle the demands and sleep deprivation. We learned that private home health care is not covered by insurance or Medicare and that 24-hour care would cost over $450 per day.
The hospice team thought Al would live about a month or two. By March, we all thought Al was going to die. He had stopped eating and drinking, slept almost continuously, became incontinent, was hallucinating and had delusional thinking. But he pulled through and has surprised all of us with his fighting spirit. He’s now feeling stronger and can think much more clearly.
After five months of private care, the price tag has reached a staggering amount, and we don’t know how long this will continue. And so, with a heavy heart, we are asking for your financial help. We are so grateful for all of the prayers, cards, meals, hugs and smiles we’ve received during this painful struggle. It’s been such a blessing to know you are there. Thank you for taking the time to read our story and supporting us if you feel you can.
~ Blessings to all of you, Al and Mary
- Danielle Simons
- Dawn Dew
Organizer and beneficiary
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