berlies
New member
- Joined
- Oct 16, 2018
- Messages
- 9
- Reason
- Loved one DX
- Diagnosis
- 01/2019
- Country
- US
- State
- GA
- City
- Dallas
My MIL started showing symptoms in June 2018. It started with back pain and slurred speech and progressed from there. In August she needed a cane to walk, and by September a walker. We had began seeking answers from her PCP and a Neurologist who couldn't give us any answers. The only thing definite was a pesky UTI that wouldn't go away.
In October, she took a fall and was rushed to the ER. It was there that ALS was brought up as a potential diagnosis. She remained there for 2 weeks while test after test after test was run. Trying to find ANYTHING that could give us answers. ALS remained the probably diagnosis, but were instructed to go to an ALS clinic to confirm. The earliest appointment we could get was January.
She was moved out of the hospital and into a Rehab Facility where she was now in a wheelchair a majority of the time, but able to do short walks with a walker. She was doing PT, OT and ST nearly every day, but simple tasks were getting harder. She couldn't lift her legs to swing them into bed. She didn't have the strength to adjust herself when laying down.
In November, we moved her into an Assisted Living facility. Her speech continued to decline, she started having more coughing/choking spells. She could no longer ambulate from the wheel chair to bed, or to go to the bathroom.
January 8th - we finally got an official diagnosis for ALS, and right off the bat they wanted to schedule surgery for a feeding tube as soon as possible. Her respiratory function has declined so much that if it drops any further, she wouldn't be a candidate for surgery.
Obviously - from the progression of her symptoms from June, until now - this is moving quick. I know her wishes is to not be put on a ventilator, so I know our time is limited. I've been lurking on here for awhile, and have seen others talk about their timelines - and from what I've read it seems that this is moving uncharacteristically quick. It's heartbreaking.
My husband has been a saint during this whole process. He has taken care of all the arrangements, paperwork, appointments, brings her meals, helps her to the bathroom, into bed - everything. His Father passed away while he was a senior in high school from Cancer - a short 6 months after diagnosis. His parents had divorced and he lived with his Dad, and had to become his caretaker pretty quickly. He had to cook and clean, help him go to the bathroom, and shower, had to arrange hospice, and funeral arrangements, sell off his assets - all before college. And now it seems like the situation may be repeating itself.
So - I guess I have two questions. How much longer do we have with her? And second, what is the best way that I can be there and support my husband. This is unlike anything I've ever dealt with - and while I love my MIL and am close to her, I know that I can't imagine what my husband is feeling. He's going to lose both his parents to rapid violent diseases. It sucks.
In October, she took a fall and was rushed to the ER. It was there that ALS was brought up as a potential diagnosis. She remained there for 2 weeks while test after test after test was run. Trying to find ANYTHING that could give us answers. ALS remained the probably diagnosis, but were instructed to go to an ALS clinic to confirm. The earliest appointment we could get was January.
She was moved out of the hospital and into a Rehab Facility where she was now in a wheelchair a majority of the time, but able to do short walks with a walker. She was doing PT, OT and ST nearly every day, but simple tasks were getting harder. She couldn't lift her legs to swing them into bed. She didn't have the strength to adjust herself when laying down.
In November, we moved her into an Assisted Living facility. Her speech continued to decline, she started having more coughing/choking spells. She could no longer ambulate from the wheel chair to bed, or to go to the bathroom.
January 8th - we finally got an official diagnosis for ALS, and right off the bat they wanted to schedule surgery for a feeding tube as soon as possible. Her respiratory function has declined so much that if it drops any further, she wouldn't be a candidate for surgery.
Obviously - from the progression of her symptoms from June, until now - this is moving quick. I know her wishes is to not be put on a ventilator, so I know our time is limited. I've been lurking on here for awhile, and have seen others talk about their timelines - and from what I've read it seems that this is moving uncharacteristically quick. It's heartbreaking.
My husband has been a saint during this whole process. He has taken care of all the arrangements, paperwork, appointments, brings her meals, helps her to the bathroom, into bed - everything. His Father passed away while he was a senior in high school from Cancer - a short 6 months after diagnosis. His parents had divorced and he lived with his Dad, and had to become his caretaker pretty quickly. He had to cook and clean, help him go to the bathroom, and shower, had to arrange hospice, and funeral arrangements, sell off his assets - all before college. And now it seems like the situation may be repeating itself.
So - I guess I have two questions. How much longer do we have with her? And second, what is the best way that I can be there and support my husband. This is unlike anything I've ever dealt with - and while I love my MIL and am close to her, I know that I can't imagine what my husband is feeling. He's going to lose both his parents to rapid violent diseases. It sucks.