Hi, Ranger.
Sorry to see such a young one go, with such young kids. Maybe my experiences will be of some benefit. Brace yourself—I do not sugar coat.
My Kristine was 50 when she tripped once. Being a medical doctor, she knew that every effect has a cause, so she saw a neurologist, got an EMG, and tears were shed.
In December 2010, she was doing cartwheels. January: cane. Feb: walker. March: part-time wheelchair. April: Complete lower paralysis and arms and hands too weak to do much. She operated a power chair with her remaining two fingers, and it was difficult to understand her speech.
She was a veteran, and the ALS was caused by exposure to chemical weapons (probably) so the VA took very good care of us.
Antidepressants were necessary for everyone.
When she was bed-ridden, we took care of the paperwork and trained our 14 and 16 year old how to feed her, prepare her meds, scratch her, wipe her butt, use the patient lift, and drive her to the wheelchair van at dinner time.
She refused any tubes, trache or PEG, and said she did not want to go into the hospital for any reason. She would prefer to live at home, even if the care were deemed inadequate. I’m told that probably all doctors prefer the “no tubes” route. We put a DNR on our refrigerator door for EMTs to see it.
Bedridden or not, we loaded her up every day, supported by straps, and took her out to eat, where we took turns feeding her what little she could swallow.
At some point, she noted that her weakness and breathing difficulties were worsening. Considering the speed of this progression, she simply began to cry and said, “Michael, it’s time to call Hospice.” We got a nurse to sit in the room, and I stayed with her 24/7, ordering delivery food for the family. Her entire family of sisters and brother took shifts talking to her and playing with the computer and television.
When she couldn’t swallow, we served her Coca Cola by dropping it into her mouth with a straw, half CC at a time. Very carefully, in case it would go down the wrong tube, which it did every day, causing a life threatening choking. We squeezed her and used suction to clear her throat.
Hospice nurses varied in quality from outstanding to worthless, so I did all the vitals, meds, and air adjustments in teamwork with the nurse. Hospice put a box of meds in the frig, mainly relaxers and morphine.
Krissy communicated by moving her gaze across a computer, which spoke to us. But she would get tired mid-sentence.
At some point, she managed to tell us the words “air hunger” and so I insisted on having the doctor drive to my house. I wasn’t sure if this was it. By giving her the morphine, would I be killing her?
The doc explained how the morphine allows the CPAP to open the lungs easier. Indeed, the CPAP and morphine did well.
Each time increased her air hunger, we offered her the choice to get more air, or use more morphine She often chose morphine. It totally eliminated her fears, anxiety and air hunger.
Then within a few days, her eyes locked up and she had absolutely no method of communicating whatsoever. No muscles worked anywhere. He eyes were pinpoints from the drugs. Her urine turned dark and she took no drinks except a wet sponge on her lips.
The next evening the nurse said she would die soon, and I thought she meant within several hours. Indeed, she meant ‘now’. So the family gathered around, and as my daughter and I held her hands, the breathing stopped, the heartbeat went eerily silent, and her pupils opened wide.
We said some nice words, toasted a drink, called the organ donor hotline and the funeral home, who took her away on a gurney covered up.
There was no coma, no pain, no fear, no discomfort. She was totally locked up for only a day or so, and didn’t care because of the drugs.
I’m really glad she went quickly, as she wanted.
