The wonderful people who meet our rapidly expanding needs are really the backbone of the ALS community. They have to perform all of the household chores that we PALS used to do. They take care of us and have to fight for time to do their own chores. Given their place in our lives, I think it's important to consider their views on this decision. Below is what I've formulated for CALS. As always I welcome outside input.
Questionnaire for spouses/caregivers
1. What is your age and the age of the person with ALS?
2. How long has the care receiver had ALS? What is the disease stage?
3. Do you have young children? Adult children?
4. What type of insurance coverage do you have?
5. What factors are important to your quality of life?
6. Has the care receiver made a decision about LTMV? If so, do you agree with the
decision? What were the most important factors in the care receivers’ decision about LTMV?
7. Do you currently have some home health care services? If yes, how frequently? Is the care skilled or unskilled?
8. What has been your experience with the homecare provider or agency?
9. Do you have any medical problems?
10. If the care receiver is on LTMV, at what point will the vent be turned off? Have you
and the care receiver discussed how the patient can communicate his or her wishes in the later stages of the disease?
11. Do you feel overwhelmed by your caregiving duties?
Have you taken a respite break? Do you have plans to take one?
What activities do you use to help you cope (exercise, meditation, spending time with friends outside the home)?
12. Do you go to ALS support group meetings? If so, are they helpful?
13. Do you have support from friends, family, church, social groups, etc.?
14. Has the ALS Association and/or Muscular Dystrophy Association been helpful? How, specifically?
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1 comment:
Here is a perspective from a 12 year veteran of ALS and 6 year veteran as a ventilator user. My first comment is - What's the big deal? Let me give you some background. I was diagnosed when I was 38. I was an Army nurse with certification in critical care. Yes, I had worked in ICU and had extensive professional experience working with ventilators. So I knew exactly what I was doing.
My son was 6 when I needed the trach and ventilator to live. It was a no brainer, I knew for years before this was my choice.
I had used a Bipap for four years prior to this, with the last several years using it 24/7. I was completely reliant on it. The transition was Bipap to ventilator was absolutely refreshing! I can describe this later if there is interest. I found I had more flexibility, greater mobility, and infinitely more comfort. But I was never intimidated by a ventilator because I knew them as an RN. Just as you shouldn't be intimidated. It's just a machine that helps you breathe, like glasses help you see. Like I said, it's really no big deal.
Email me any time if I can answer any specific personal questions. StubanRN@aol.com
Good luck!
Sandy
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