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ahungrysoul

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Loved one DX
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Utah
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Layton
My sister has ALS. She was diagnosed about 2 and 1/2 years ago. From everything I have read she may have anywhere from 6 months to 13 more years to live. The only part of her body that she can move is her left hand. I just finished reading "On Any Given Day" written by Joe Martin, a Bank of America executive, and he lived almost 12 years after being diagnosed with ALS. At least six of those years, he was completely paralyzed. As I'm sure everyone here knows, every ALS patient is different.

My sister has been a hospice patient since around the beginning of this year, receiving care in her home. Normally a CNA comes in twice per day and a nurse comes to visit every couple of weeks.

A couple of months ago, my sister developed a bed sore. It has progressed to the point that it covers a large part of her backside and now there is staph infection in it. She is in so much pain that she is constantly drugged on methadone and morphine. She has no quality of life. A doctor had never even been to visit her until the bed sore got so bad that she was in continuous, severe pain. My brother-in-law describes the bed sore as looking almost like “hamburger.”

My concern, and something I just learned yesterday, is that the hospice company is not providing the types of treatment required for the bed sore to heal. Apparently Medicare does not pay for bed sore treatment. So any treatment comes directly out of the profits of this company. I think that they are just waiting for my sister to die so that they don't have to deal with this. She is given the pain meds freely and they are just left on her bedside table as though overdosing is not a concern, because they know she is going to die anyway.

If she switched hospice companies now, then she would have to pay for the wound treatment, which is not possible.

Ironically my sister has worked her whole life providing home health care as her profession. When the bed sore was just beginning to form, she asked about a wound vac and they told her it wasn't necessary. There is a wound clinic nearby, but they have only taken her there once.

When my brother-in-law asked for the opinion of an unrelated medical professional and she told him what the wound treatment needed to consist of, he confronted the hospice nurse and she stated that it was just someone else’s opinion. They are doing little to nothing to help my sister because they think she is going to die soon. The nurse keeps telling her husband and children that she doesn’t have much time left, but when my mom asked her what she knew about ALS, she said she had read a little about it. She has no idea how much time my sister has left – no one does!

I keep thinking, what if my sister has 10 more years to live? Can we really expect her to live like this? My family and I don’t know where to go for help. All we want to do is give my sister some quality of life in her last days, weeks, months or years.
 

CindyM

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New England
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Anytown
well, I don't care if she only has an hour left - she deserves compassion, treatment, and comfort. There must be a patient advocate or umbudsman around somewhere. Maybe with your Department of Public Health, the nursing agency providing services, her local ALS clinic? I'd make them give you solid answers as to why she can't get wound care. The nerve of these people!

Just my rant for the day, Cindy
 

ahungrysoul

New member
Joined
Aug 31, 2008
Messages
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Loved one DX
Country
US
State
Utah
City
Layton
Hi Cindy,

I know what you mean - I haven't been able to think of anything else since I discovered the extent of the pain my sister has been forced to endure.

The only patient advocate I know of is the social worker who works for the same hospice company and he has been no help whatsoever.

Do you know of any organization we could contact to find a patient advocate?

Thanks, any suggestions at all are appreciated.
 

brooksea

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Sep 27, 2006
Messages
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HM
Please, you must call the ALS Clinic! Has your sister been seen at the clinic? There is a social worker there just for this type of situation. You do not need to have your sister suffer! Also ask them about the ALS association and whether they can send someone out to see what is going on! Do NOT listen to those people at the hospice your sister has hired. They are obviously just in it for the money!

This is abuse! If her husband or you were taking care of her y'all would be in trouble for allowing this to happen! Call your county Elderly Abuse Program.

Also, contact someone form her church that may be able to help.

This in not right! PLEASE let us know how your sister is doing!


University of Utah MND Clinic
175 N. Medical Drive, 5th Floor
Salt Lake City, UT 84132
801-585-6052
Medical Director: Mark B. Bromberg, MD, PhD
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
City
Mays Landing
Thanks CJ!

Your reply was perfect! Prayers that someone in Utah will intervene for this poor woman.

She is blessed to have a sister and husband that cares and wants to help get to the bottom of this.

In NJ our Hospice group is a team of loving "care first" angels. Also, our ALS team encourages us to call them with any questions as they are in direct contact with Hospice.

I pray for your sister that "someone" will take care of this bed sore issue. Also praying for her pain. It must be awful.

Patty:(
 
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