doglady125
New member
- Joined
- May 25, 2019
- Messages
- 2
- Reason
- CALS
My Mom was diagnosed with ALS last December. By the time she was diagnosed, my Dad had already had to purchase a used power chair to use for walking any distances.
She had initially been diagnosed with Hereditary Spastic Paraplegia a couple of years prior to the ALS diagnosis, but had problems for a few years preceding either diagnosis. She kept complaining of weakness in her legs. Then she started having frequent falls. She then got to the point that she needed a walker for distances, then power chair for any distance and walker for very short distances.
Currently, she can walk very slowly with the walker, but only from her lift chair to the bathroom. She requires assistance getting in and out of bed, getting up from anything but the lift chair/recliner, cutting food, dressing, bathing, etc. My Dad is her full-time caregiver, but I fear that it's taking a heavy toll on him. I assist when I'm not at work.
Now, her speech is affected (she can talk, but we have to ask her to repeat at times) and she chokes easily. Dad and I are both wondering what the future holds and what the typical progression is. We do not want to ask the doctor in front of her. We do not want to put her in a nursing home and are doing our best to manage at home. He has stated that she will never be put in a nursing home as long as he's alive.
He's in need of a knee replacement, but refuses to have any surgery, as he will not put her in a rehab facility even temporarily, and we are not in a financial position to be able to hire someone while I'm at work. I work full-time, and unfortunately, cannot take any extended leaves of absence and keep my job, and my income is required to keep us afloat. Some questions that we have are as follows:
1. Do people with ALS typically become totally paralyzed before needing to be put on a ventilator?
2. Do they typically lose the ability to speak or swallow first?
3. What is a common time-frame from diagnosis to becoming ventilator dependent?
4. How is the disease managed if a person refuses the ventilator? At the beginning, she told us that she never wants one. But we cannot stand the thought of her just laying there, unable to breathe, and suffering. That sounds absolutely horrible. In a way, knowing her wishes, we hope that she passes peacefully in her sleep before reaching that point.
Thank you for any advice or guidance. Our family is totally devastated. It's only been the 3 of us for all these years, as my parents were never close to the rest of the family and I'm an only child. So we are pretty much in this battle alone.
She had initially been diagnosed with Hereditary Spastic Paraplegia a couple of years prior to the ALS diagnosis, but had problems for a few years preceding either diagnosis. She kept complaining of weakness in her legs. Then she started having frequent falls. She then got to the point that she needed a walker for distances, then power chair for any distance and walker for very short distances.
Currently, she can walk very slowly with the walker, but only from her lift chair to the bathroom. She requires assistance getting in and out of bed, getting up from anything but the lift chair/recliner, cutting food, dressing, bathing, etc. My Dad is her full-time caregiver, but I fear that it's taking a heavy toll on him. I assist when I'm not at work.
Now, her speech is affected (she can talk, but we have to ask her to repeat at times) and she chokes easily. Dad and I are both wondering what the future holds and what the typical progression is. We do not want to ask the doctor in front of her. We do not want to put her in a nursing home and are doing our best to manage at home. He has stated that she will never be put in a nursing home as long as he's alive.
He's in need of a knee replacement, but refuses to have any surgery, as he will not put her in a rehab facility even temporarily, and we are not in a financial position to be able to hire someone while I'm at work. I work full-time, and unfortunately, cannot take any extended leaves of absence and keep my job, and my income is required to keep us afloat. Some questions that we have are as follows:
1. Do people with ALS typically become totally paralyzed before needing to be put on a ventilator?
2. Do they typically lose the ability to speak or swallow first?
3. What is a common time-frame from diagnosis to becoming ventilator dependent?
4. How is the disease managed if a person refuses the ventilator? At the beginning, she told us that she never wants one. But we cannot stand the thought of her just laying there, unable to breathe, and suffering. That sounds absolutely horrible. In a way, knowing her wishes, we hope that she passes peacefully in her sleep before reaching that point.
Thank you for any advice or guidance. Our family is totally devastated. It's only been the 3 of us for all these years, as my parents were never close to the rest of the family and I'm an only child. So we are pretty much in this battle alone.
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