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pgatto

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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
 

Barbie

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No matter what those residents want--what does she want? a Trache will extend her life, but many pals (I think most personally) choose not to get one. Do you have an ALS clinic that she was/is involved in? you are right--hospitals know very little about als and their ignorance can be damaging. you need to be a strong advocate . if you do not have a neuro or a pulmonologist, call your local ALSA chapter and explain what is going on. they may be able to help you with the hospital. I think you need to act quickly.

I am so sorry your mom is suffering
 

laurel

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Paula what a sad story. Do you have any idea what your mother wants? If she is in no condition to tell you, I think you can decide based on what you would want if you were in her position. You are describing very poor quality of life for her right now especially with that stage 4 pressure sore. I faced end of life decision making for both of my parents, and it was an angst filled time for me as my parents could not participate due to the condition they were in. I had a long talk with my very caring GP (who was not involved with their care) and I asked about whether they would have quality of life after the procedures that the doctors wanted to do. She put her arm around me and said "no there will be no improved quality of life". They made up my mind for me--so we just continued with supportive care and keeping them comfortable. Have you got a trusted GP to talk to? After I talked with my GP, I spent time with a pastor and that really helped too. I am so sorry for how things are for your mom and for you and your family. I will say prayers for you. Sending a big hug too.

Laurel
 

laurel

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Paula I forgot to mention that I found when my mom was dying and in hospital and the doctors were pushing for advanced measures, the head nurse was very down to earth and honest about what my mom would face if I consented to what the doctors were encouraging. So the head nurse might be a good resource too.

Laurel
 

pgatto

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Joined
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Thanks very much for responding guys!

Laurel. Unfortunately, she is in denial. She still does not believe she has ALS. So getting her to tell us what she wants has been close to impossible. I think she understands she will never recover back to the way she was before she went into the hospital, but believes a near recovery is somewhere in her future. When she was diagnosed with ALS a few years ago, she basically stopped seeing doctors. So, no one we can turn to there. As I said, the doctors in the hospital were near useless. The lack of continuity in her care and the inexperience of the residents has added to our nightmare. The hospital had one Pulmonolgist who knew nothing about her case come in and talk to her about a trach. She told wonderful stories of a patient of hers who was a socialite, went to parties, and changed her own trach pipe. Thanks so very much for the support and prayers. I'm grateful to, at the very least, to have a wonderful site/forum like this to turn to.
 

laurel

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Paula that denial issue is a tough one. In my part of Canada, very few people with A L S get trachs. I think a few factors are involved most of them involving the care required after. Few facilities here accept trached patients, and I guess many families don't feel capable of taking on the care required. We had a past moderator JoelC who had a trach and you can search under his name and read about his experiences. He had to fight to get the trach, but he had a daugther-in-law who is an RN living in another house on the property who assisted with some of those issues. Another member who has since passed, Barry, considered a trach as well, but in the end didn't want to impose all that came with it on his wife. In the States, it seems different and a few more do opt for it. It seems to me that having enough money for the care giving required is a huge part of the decision making. We do have one younger forum member Halfin that has a trach and just uses it at night. You could always private message him and ask his views. It sounds like it was quite an adjustment for him and his wife, but he seems content with it now. Best of luck and keep us posted.

Laurel
 
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Barbie

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Yes, care after a trache is very intense--24/7. We had a member JoelC who had one for many years and was very happy with his decision. he was middle aged, and his wife cared for him. he had a great web page with alot of info on the trache decision--I wish I knew what it was. I am not good at looking up old info here. oh I see Laurel already said that!

I do not know if I would trust a nursing home to do all the proper care a trache requires either. I have told my husband, as heartless as it seems that if he chose a trache I could not do it. good thing he doesnt't want one...

Please call ALSA for help... you might also talk with a hosptial social worker or try hospice.
 

marypat

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Joined
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Messages
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PALS
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not all nursing homes accept trachs and vents because it is beyond their scope of care. you will have to find a place that will. it will limit her ability to talk until she learns how to. it can improve quality of life but takes work. i have discussed trachs for myself but i'm a nurse with nurse friends to help and i'm in my 40's. in my 70's i probably wouldn't do it. just my thoughts wishing for some guidance for you
 

Susan10

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Joined
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it is for reasons like this that I have on file a fully executed DNR. You've been given good advice here.
 

pgatto

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Joined
Oct 18, 2012
Messages
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Loved one DX
Diagnosis
10/2010
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US
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il
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chicago
Thank you all so much for taking the time to give me some much needed and appreciated sound advice. My sister and i just have felt so lost and helpless throughout this experience. These hospitals, health Care factories have made it very hard for us to trust their judgment.
 

pgatto

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Joined
Oct 18, 2012
Messages
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Loved one DX
Diagnosis
10/2010
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US
State
il
City
chicago
Mary pat. Thank you especially for responding. It was the perfect mix of empathy and experience that i needed.
 

marypat

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287
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PALS
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Country
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City
london
your very welcome. anything i can do to help
 
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