Hewitt
Active member
- Joined
- Dec 8, 2015
- Messages
- 53
- Reason
- Loved one DX
- Country
- US
- State
- NC
- City
- Winston-Salem
My beautiful sister died very unexpectedly of complications of ALS in the middle of the night last night. She had just been in the hospital for replacement of her feeding tube, and the Hospice nurse had examined her a few days ago, and no red flags were raised except for the fact that her blood pressure was unusually elevated. When I arrived for a visit on October 20th I was startled to see that she was doing the sort of guppy breathing that preceded my mother's death, but her neck was hyperextended due to rigidity, and neither the ER doctors nor her nurse seemed to be concerned about it, so I decided her breathing issues were a result of altered posture. Her life had become pretty tough in the last month, so I feel enormous relief at knowing she is at peace at long last, but it is still a shock. I am still surprised that neither the hospital nor the Hospice staff seem all that familiar with issues that face ALS patients, even when that hospital has a wonderful ALS department. I guess this is because it is still a pretty rare disease, but this lack of knowledge really adds an additional burden to ALS patients and their families.
For all of you caring for an ALS patient, be sure to give them a big hug and tell them that you love them every day. The bravery, stoicism and grace required of ALS patients as they navigate this journey leaves me feeling truly humbled, and it will inform the way I spend the rest of my life. I'm so grateful that I got a chance to spend a week with my sister and tell her how much I loved her. Fly free at last, Alison Doane--
For all of you caring for an ALS patient, be sure to give them a big hug and tell them that you love them every day. The bravery, stoicism and grace required of ALS patients as they navigate this journey leaves me feeling truly humbled, and it will inform the way I spend the rest of my life. I'm so grateful that I got a chance to spend a week with my sister and tell her how much I loved her. Fly free at last, Alison Doane--