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Mary Helen Barr

Active member
Mar 6, 2006
I was wondering if any of you have bedsores. My father has a large one on the left side of his rear end, right where he sits. He has had it debrided by a wound doctor, and has another appointment on Wednesday. We were told to change position every two hours, and to only sit on the sore for an hour at a time, only two or three times a day max. Well, those instructions are not possible in his situation. He sits on it about 24 hours a day, or at least 20 hours a day. He can not breathe well lying in bed. Propping him up doesn't help very much. He fills with mucus, and starts to panic. Also, since he wants to be at home, there is noone to move him every two hours. I provide about 85% of his care, but I can't be running over to his apartment to move him all the time. I change his bandage every day. The sore smells horrendously. In my opinion, all that can be done is to manage it, keep changing the bandage, and try to make him comfortable. The debriding appointment makes the sore bigger, and I can't imagine what it will be like after this next appointment. When I bandage him, I immediately throw away all of the bad smelling things in the room, and spray bleach water all over the place. The smell goes away as far as visitors are concerned, but when I get him up each morning, it's there. I know the odor is always there, but he's sitting on it, so we don't notice it.

He was just signed up for hospice, and they seem to be very nice. I sometimes don't know how long I can go on. Even though they will come to see him, and bathe him, etc, I am still the one who has to go over there every morning at 4:30 so I can get to work by 7:00. So far, there is noone who can move him confidently. He feels insecure with anyone else so far, and I always have to reposition him anyway, after someone else does it. If he's not just right, he has trouble breathing, gets "mucusy", and in general, just pathetic.

Sorry to go on so long. I kind of got off track. I really wanted to know about PALS experiences with bedsores. It seems that you can't win when you have bedsores and ALS. I should mention that my dad's back is very curved, and it is absolutely impossible to straighten his airway, so that complicates things while in bed. He spends all day and night in a recliner, and he is comfortable there. It seems to me that it is not possible to heal this sore, and that it will only continue to get worse.

I had the same problem with my husband, and his worst bedsore was on his tailbone. We got the same advice that you got - keep him off of it as much as possible - which was impossible because he couldn't tolerate being on his side at all, and the best we could do was to kind of prop up one side of his butt to let some air get to it.

See if your dad's doctor would be willing to prescribe an ointment called "xenaderm" (pronounced "zenaderm"). We tried everything on my husbands sores and it's the only thing that's ever cleared them up. We were amazed at how much better a sore would look after 3 or 4 days of using this stuff. Here's one link - I know there's many more out there if you do a search on google for it. There's pictures of sores that have been cleared up with it, some of them really bad ones.

Bless your heart for caring about your dad so much, he's blessed to have you.

from nursebella2 in 2005:

"I would suggest contacting a wound care specialist in your area... they are often a part of a multi-diciplinary team in home and community care and are most often a registered nurse (calgary in particular has some leading breakthroughs in wound care in the community). There are many great new products and innovative solutions for bedsores. Looking at prevention is crucial... but also considering nutrition and management of existing sores. If there is a wound that is persisting and not progressing in healing... I have seen VAC (vaccuum assisted closure) used in my area of work.

Hope that helps."

Very sorry your Dad is having so much trouble Mary! ALS seems to a damned if you do and damned if you don't type of thing!:evil:
I commend you for this taking the extra time to take care of your father, it takes a special person to be able to go through the daily chores of going over to another housewas so they can have somewhat of an independent living God bless you for that. Have you given any thought to getting a hospital style bed, one with the an air mattress that would allow somewhat of a free-floating, this might end the problem with bedsores and also give him the control of where he can set up and not feel like a suffocating. This way he can be up in the recliner during the day and then retreat to the bed at night and still have full control over the angle at which he can sleep at. And he will not be laying down flat. I know exactly how that feels, to feel like someone is sitting on your chest and you can’t get a breath of air, you’re suffocating and not being able to get up is something I would not wish upon my worst enemies.

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