My Friend

[Le Le]

Hi Everyone,
This is only my second post and some of you were very helpful with my first so I hope you don't mind if i ask for your input on my friend's situation. She has had ALS for ten years and recently came down with H1N1. She was in CCU with so many complications for seven weeks and was transferred to a Respiratory rehab.
I guess we assumed that when she went to rehab she would be aggressively cared for in terms of her speech, respiration, etc but she has been there a week and today was the first day that they tried the special trach that would allow her to talk. She cannot communicate with her caregivers because she can only move her lips. She hasn't been moved out of her bed at all even though that is supposed to be one of the thing that they are working on.

I guess my question is this. Are there patient advocates or liaisons who manage the health care of ALS patients so that we can be sure that all of her needs are being met? It seems that the hospital that she is in (and it has a wonderful reputation) is more experienced with older individuals and they are not clued in to caring for a younger woman with so many complex needs. Is there an agency that her husband can contact that may suggest another setting or an advocate?

 

[sadiemae]

I would just call the police, because this is criminal. There should be a person at the hospital that is a patient advocate. I really do not know(I am not an expert) Lori

 

[joelc]

That seems to be a universal problem. You might have to be the one to scream and holler on her behalf.

The social worker at the ALS Society/Clinic might be your best bet.

 

[indigosd]

You and your PALS are caught in such a horrible crack in the system! Is her husband designated as her power of attorney for medical care? One of the first thing that I would do is start documenting, take photos and video. Keep a log of the who, what, when and where of what is happening-FACTS only-no emotions or perceptions. i.e. Nurse Jones was at the bedside at and checked her vital signs. Aide came in at 6 am and repositioned her on her left side and gave oral care. She was last repositioned at 11 PM [see notes from 11 PM] I would also call the ALSA in Boston [do you have one?] and explain the situation and ask them to immediately send an ADVOCATE to assist your PALS! Have you meet the Social Worker? Be calm and assertive and explain what needs to be done NOW! Try the honey catches more flies than vinegar approach FIRST. If that doesn't work, pull on your combat boots, call for the smoking flying monkey's and call in the STATE with a complaint of negligence. Nothing scares a hospital more than seeing a family member or a friend start documenting facts calmly. I wish that I could say that this is the first time that I have heard a situation like this happening but it isn't and it makes me outraged. Supposedly this is something that the ALSA is suppose to help us prevent and is suppose to fly to our rescue. Please let me know how it workd and THANK YOU for the love and concern that you have for your dear friend! What breaks my heart is the awareness of PALS that do not have an advocate...we need to find a way to help them and to help ourselves. Hugs and courage to you, Kay Marie

 

[DgtofTNfan]

My first thought was how involved are you in the care? Are you a close friend who is there with her family and knows the details of the day to day care or are you just expressing your concerns and wondering how to help the family from observation? I ask because not all people tolerate trachs that allow for speech depending on their respiratory condition. The larger trachs that people first get during a respiratory crisis do not allow for good occulsion and there is a process of downsizing that takes several days to a week. I am not an RT but I know there is a process. I can't tell from your post if the hospital forgot or if they were prepping her for the trach that best supports a speech valve.

As far as not getting her out of bed, staff experience with ALS, etc., I would first start with the staff at the hospital. Ask the staff how many ALS patients have they worked with? Ask to see the Social Worker, Nurse Manager or Director of the Unit. Provide them with your contacts from the ALS society as a resource to better understand the needs of ALS patients if they do not have the experience. I found that lack of experience with an ALS patient was common in the hospital for my Dad. Relay your concerns and come up with a plan to address. If that does not work, go higher with the administration.

I would also document care. Staff will pay attention if you write things down. Also ask them their name if they do not provide it. This makes people more accountable. Call in Adult Protective Services to investigate. I hope she gets the care she deserves. She has a good friend in you.

Dana

 

[Le Le]

Hi Everyone,
Thank you! Yes I am very close to her and the family but have limited weight in the situation due to HIPA laws, etc. The most I can do is research and lend support. So you are helping me with my research! Everything you say is hitting a nerve. I found the number for our local ALSA group and did find a reference to patient advocates. My friend's husband is calling them today. I will pass on the advice to document everything. Great suggestion! I agree that you get more with honey than vinegar and we should try that route first but I have no problem putting on the combat boots when necessary. Nothing about this situation has been easy so I guess there is no reason to expect that this situation will be any different. Thank you all for caring. I will keep you posted.

 

[Moonmark]

Hi Le Le,

so sorry to hear about your friend---she is very lucky to have you helping her. I see that you are in Boston, Mass. I live in Massachusetts, too. If she needs additional equipment, there is an agency based in Cape Cod, Mass., that helps people with ALS and their families. They may also be able to help you with advocacy issues at the hospital. is she at Mass General?

here is a link to the organization:

Compassionate Care - a nonprofit organization serving the needs of families dealing with ALS

Good luck,

Sandra

 

[Le Le]

Hi SandraD,
Thank you for the link. I'm not sure but I think that organization has lent support to my friend before. I will pass the link on to her husband in case he is unaware of it. I am waiting to hear if he reached anyone today at ALSA. I'm hoping so. My friend was a patient at MASS General but I don't think she has been there recently. Accepting this disease has been very difficult and going to her appts. in Boston were emotionally taxing. I think that this is part of the problem. She doesn't really have a doctor orchestrating her care. I recommended to her and her husband that they should get back in touch with their doctor at MASS General and see what they can do. He would like to find a facility on the South Shore of Boston that will take her on a vent and has expertise or at least some experience with ASL. The ideal outcome would be weaning her from the vent so that she can go home. I don't know how realistic that is, considering that she has been vented now for two months.:-|

 

[brooksea]

Look in to the Steve Saling ALS residence in Boston! It may not yet be completed, I'm not sure. Google it. He has ALS and use to live in GA. I've met him and he is a very smart and dynamic individual who is an architectural landscape designer. He has now designed a place for pALS to live that live on a vent in Boston. Very exciting for those that are on a vent that need care. This will be a facility that has everything! Please look in to it!