browningle
New member
- Joined
- Jan 11, 2009
- Messages
- 2
- Reason
- CALS
- Country
- US
- State
- AL
- City
- Briwmingham
Hi everyone. Let me first say that I have seen the pain and frustration caregivers go through everyday and I admire the strength all of you have to make it through the daily stuggle that is inevitable with ALS.
I am a social worker by education, but was working temporarily, or so I thought, for a childcare agency when I was asked to work with a family full time (In November of 2004). The mother had been diagnosed with ALS (around 2000) , and 3 years later was diagnosed with Lyme disease. It is really unknown if one of the diagnosis was false or if the late stage lyme led to ALS but either way, the end was the same.
When I began working with the family, I was told she had been diagnosed with Lyme and would eventually improve but at that time needed help with daily activities. When I started the job, she was confined to a wheelchair, although we could secure her hands to a walker (using ace bandages) and she did some exercises with the walker daily. She had severe problems with speech and swallowing, although she could feed herself once the food was prepared and cut into bite size pieces.
All this is really beside the point. I worked with her for almost 4 years. While she was being treated for Lyme, there was very little improvement despite many many different trial medications and almost daily physical therapy. However there was also very little deterioration from the condition she was in when I first began working with her.
Around the middle of last year, her husband and I began to notice that her neck muscles seemed to be getting weaker. She could not hold her head up well when getting in bed and when I would help her with lotion and makeup on her face, her head often slowly fell back, although she didnt have a problem holding her head up when just sitting around.
In late August of 2008 she developed what we thought was a bad cold. She began to have much more difficulty swallowing, which we thought was caused by the 'cold'. After a couple of days of not being able to eat, her husband took her to the hospital. It was decided there that she had lost her ability to swallow... as a normal progression of ALS.... so they took her off fluids and nutrition and basically waited for her to die... which took 16 days after being taken off all IV's except pain meds.
So my first question is: I know ALS progression is different in everyone, but is it 'normal' to have very minimal deterioration for 3 years and then to all of a sudden lose the ability to swallow? Because not long before she had started to lose the ability to swallow, she started taking a new medication which I later found out has been known to cause difficulty in swallowing.
My next question is: Is there anyone here who is a non-family care-giver? Like I said before, I admire the strength one has to have to take care of a loved one, but I have had a very hard time getting past her death. Her family has been wonderful and we have made ourselves available to each other for comfort but I feel like the are mourning a different person than I am. They knew her before she was ill but I didnt. I knew a very angry, frustrated, scared woman who was fighting every day to get better. I know that her family's pain is so much greater than mine, but her and I had become very close friends This job was supposed to be temporary, I did not go into it knowing I would lose someone I had gown close to. Being a social worker makes me even crazier in dealing with this because I've been through the classes on death and dying and I should be able to get through this, but it seems I am just stuck in this angry phase I can't seem to pull myself out of.
I am sorry this post is so long, I guess it is partly because I want to explain as much of the situation as possible, and partly because I just need to unload.
Thank you
I am a social worker by education, but was working temporarily, or so I thought, for a childcare agency when I was asked to work with a family full time (In November of 2004). The mother had been diagnosed with ALS (around 2000) , and 3 years later was diagnosed with Lyme disease. It is really unknown if one of the diagnosis was false or if the late stage lyme led to ALS but either way, the end was the same.
When I began working with the family, I was told she had been diagnosed with Lyme and would eventually improve but at that time needed help with daily activities. When I started the job, she was confined to a wheelchair, although we could secure her hands to a walker (using ace bandages) and she did some exercises with the walker daily. She had severe problems with speech and swallowing, although she could feed herself once the food was prepared and cut into bite size pieces.
All this is really beside the point. I worked with her for almost 4 years. While she was being treated for Lyme, there was very little improvement despite many many different trial medications and almost daily physical therapy. However there was also very little deterioration from the condition she was in when I first began working with her.
Around the middle of last year, her husband and I began to notice that her neck muscles seemed to be getting weaker. She could not hold her head up well when getting in bed and when I would help her with lotion and makeup on her face, her head often slowly fell back, although she didnt have a problem holding her head up when just sitting around.
In late August of 2008 she developed what we thought was a bad cold. She began to have much more difficulty swallowing, which we thought was caused by the 'cold'. After a couple of days of not being able to eat, her husband took her to the hospital. It was decided there that she had lost her ability to swallow... as a normal progression of ALS.... so they took her off fluids and nutrition and basically waited for her to die... which took 16 days after being taken off all IV's except pain meds.
So my first question is: I know ALS progression is different in everyone, but is it 'normal' to have very minimal deterioration for 3 years and then to all of a sudden lose the ability to swallow? Because not long before she had started to lose the ability to swallow, she started taking a new medication which I later found out has been known to cause difficulty in swallowing.
My next question is: Is there anyone here who is a non-family care-giver? Like I said before, I admire the strength one has to have to take care of a loved one, but I have had a very hard time getting past her death. Her family has been wonderful and we have made ourselves available to each other for comfort but I feel like the are mourning a different person than I am. They knew her before she was ill but I didnt. I knew a very angry, frustrated, scared woman who was fighting every day to get better. I know that her family's pain is so much greater than mine, but her and I had become very close friends This job was supposed to be temporary, I did not go into it knowing I would lose someone I had gown close to. Being a social worker makes me even crazier in dealing with this because I've been through the classes on death and dying and I should be able to get through this, but it seems I am just stuck in this angry phase I can't seem to pull myself out of.
I am sorry this post is so long, I guess it is partly because I want to explain as much of the situation as possible, and partly because I just need to unload.
Thank you