ALS From Both Sides
Care of an ALS Patient
By Diane Huberty, Retired RN, Certified Neuro Nurse
...and ALS Patient
The Vent Decision
NIV to Vent
Quality of Life
Planning for a Vent
The Vent Decision
If you are evaluating the pro's and con's of going on a ventilator when the time comes, there are big questions you need answers to. How will affect my quality of life and that of my family? What help will I need at home? What will it cost for the equipment? If living at home becomes a problem, how far is a nursing home that accepts ventilator patients? It is hard to answer these questions because insurance coverage varies, the availability and willingness of family and friends to help varies, and each individual's adaptability to advancing ALS is different.
Breathing is not a problem if you opt for a vent and trach. Swallowing is not a nutritional problem with a feeding tube. That pretty much takes care of the actual life threatening problems of ALS!
A vent is not for everyone. Those with rapid progression and loss of nearly all movement will face being locked in (mind is working but with no way to communicate even yes/no) fairly soon. In all of the United States, a patient can request to be taken off the vent and allowed to die at any time, and the process will be done under heavy sedation and other meds for a peaceful death. Learn about your country's laws regarding your right to discontinue treatment, including a ventilator, before deciding.
The hard part is deciding "when". If the patient waits too long, he or she can be locked in with no way to say turn off the vent. Patients can live for years in this state. Most people consider that an extremely undesirable way to live. Family is stressed terribly. No one should go on a vent without deciding when they want the vent turned off and telling their family and doctors that decision. Giving medical power of attorney to someone they believe will carry out that decision is critical. Often the best person for that job is not an emotionally torn family member.
Going to a vent is not an easy decision. If you have read "Safe Harbor" you know that I have found vent life to be positive and I tend to be pro-vent. It is horrifying to me that only 5% of ALS patients in the United States opt for a vent while 50% of ALS patients in Japan do. But that is a topic about our pathetically bad health care system...
I definitely recognize that I have had all the breaks in the situation; a husband who was able to take early retirement to care for me, supportive family even though only one family member lives here and the rest are 800+ miles away. A couple of friends have pitched in to help so we don't have the expense of paid care. I am a couch potato by nature and can keep occupied and happy. Most of all, my ALS has been very slowly (but consistently) progressive making the decision to vent worthwhile. In spite of all that, I have tried to present the information here in an unbiased way as I can. I hope you find the information useful as you try to decide what to do.
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