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pgatto

New member
Joined
Oct 18, 2012
Messages
8
Reason
Loved one DX
Diagnosis
10/2010
Country
US
State
il
City
chicago
Hello. This is my second post. Thanks everyone so much for all your input, info, and help on the first one. My 74 year mother was diagnosed with ALS about 3 years ago. Since that time, she has completely lost the use of her legs. About 4 months ago, she was admitted to the hospital because of breathing difficulties. She was released to a nursing facility right before Christmas, but ended up back in the ICU 2 weeks later and has remained in the hospital since. She's is now on a bi-pap 24/7 and being fed via tube through her nose. She is able to eat pureed food, but has little or no appetite most of the time. She also has a stage 4 pressure sore on her back that is not healing. She's never had an actual physician continuously following her during her stay at the hospital. The hospital, Northwestern Memorial in Chicago, applies the "team" approach to the care of inpatients like her. Meaning she gets a new team of residents every week or so. None of which have any significant experience with ALS patients. They have given her too large of doses of anti-psych meds such as haldol and risperdal that have sent into days of unconsciousness and tremors. According to them, Valium was not an option because they felt it would have interfered with her ability to breath. Recently, they have really been pushing the idea of giving her a tracheostomy. My mother is un-married and has no other family members except my sister and me, who are also un-married. We have had numerous meetings with the residents of the week who feel strongly about giving her a trach. They have been very persistent and almost insistent. All of us are very confused and upset. At this point, we are having a time figuring out if this the best thing we could do for the best quality of life for her. Thanks again for the help and support. Paula
 
Paula, you may wish to post this elsewhere to be seen by more members. Past caregivers section is not visited by everybody. D
 
Thanks! Didn't even realize I posted it there.
 
Sorry your mom is having a tough time. My mom decided not to have the trach because she dd not want to live that way. Mom had her Five Wishes (a document stating the patient's important wishes) written down, so we knew exactly what she wanted. Please look this document up if you don't know what it is. I would suggest that you go over all the issues stated in this document and fill out the form so you will know what her wishes are. They are tough decisions that she will have to make. You don't want to have something done that she will regret. Blessings! ~ Judy
 
Paula,
There are multiple issues here and I would try to separate them. But to answer your first question, a trach might be the best option for quality of life for some people and definitely not for others. So there is no best answer or standard of care for ALS in this regard, and anyone who tells you otherwise is misinformed.

First, you are in Chicago or nearby and there are many fine hospitals there, including two, U Chicago and U IL, that work with the ALSA. If Northwestern is not the place for your mom, why keep her there?
Second, I would consult with the ALSA Chicago chapter care coordination team there and discuss options for transfer.
Third, I'm not clear and it sounds like you may not be either, on the indications for a trach at this point. If your mom is not in immediate respiratory distress, it seems more important to clarify her wishes (hopefully with no/minimal psychotropics on board) for quality vs. quantity of life, including where she wants to spend her remaining time and with what level of life support. The lack of appetite can be depression, pain, active dying...I am not sure, but whatever it is deserves better than the resident of the week.

Again, an ALSA or other social worker + an attorney with experience in end of life planning can be helpful in asking all the questions that need asking. Even if your mom is not engaged now, hopefully she can end up in an environment in which she feels more control over her destiny (roaming rotating resident teams seldom facilitate this feeling) and begin to answer the questions that need to be asked of her.

In summary, I would start with ALSA and consider a transfer in collaboration with your mom. You could probably Skype with the medical director of whatever unit (s) you consider and your mom could see a face. The fact that you feel "pressured" to make a third party decision of this magnitude suggests that whatever comes out of the Northwestern process will be suboptimal. To give Northwestern a fair shot and facilitate a smooth transition, you could also ask to schedule a meeting with a patient advocate (every hospital has someone whose job that is) + an ALSA care coordinator to discuss next steps. If you haven't or don't bond with the ALSA folk, there are also independent nurses who do this sort of thing for a living.

Keep us updated-- you are not alone.

Best,
Laurie
 
What does your mom wants? Is she ok living this life? My mom was diagnosed in June 2012. I am really sad. I am a speech therapist and I am trying to keep her breathing and speech as long she can. I personally don't believe It would be worth to live a life like that. My opinion :(
Life is worth to live as long as you are healthy, or at least do a little.
Best
Tizi
 
I got a tracheostomy almost two years ago, about a year and a half into my ALS. I found the surgery quite deblitang, although I am 56 and was in good health pre-ALS. I would also say my quality of life decreased, and the same for my caregivers. On the other hand, it's good to be alive rather than dead, so there's that.

The trache can make arranging for care more complicated. With a stage 4 pressure sore, I guess you are committed to institutional care. So if there are facilities locally that will take trache patients, you are good.

The bottom line is whether your mother is committed to living with this disease, even as it advances. Can she find happiness when she can no longer eat, speak or move? If so, the trache can potentially add years of satisfying life. If not, it may well be a hindrence to enjoying what time she has left.
 
Paula,

I wanted to pass some info to you. I follow Jeff Lester's blog, and I am friends with him on fb ( I have never met Jeff though). He has had ALS for twenty years and has had a trach for 16 years. He has had three children since his diagnosis and lives a very happy life. He even went to grad school and got two masters degrees in 2011. Since I can't post links, you can google: Ragingbear's Living with ALS and read his post from 2009 "My opinion on traches for ALS." It is a very uplifting read for ya'll to read!

~ Judy
 
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