not sure what to believe

Lgw

okay the Hospice Aide and I have been quite worried about my DH bed sores and we thought they were going to put in a catheter 2 weeks ago. Not once has this nurse looked at them. She just kept saying she had looked at the pictures and they weren't that bad. Today suddenly she looks at them because there were 2 new ones. Said they were much better than last week and the new ones were not bad at all. Is she just trying to keep me from worrying? My DH doesn't respond to tell us if he is in pain. He is getting over a bad UTI and never once did he complain that it hurt. Hallucinations went wild and the smell were the only reason we knew he had a UTI. They have assured me his skin is breaking down and this is all in the death process.

Battlebuddy

I’m so sorry you are at that point . My husband is on a really good air mattress and has had no bed sores, but his skin is breaking down in other ways.- rashes, flaking off etc. Hospice Nurse Julie says the skin is a big organ and one of the first organs to shut down.

Lgw

Yep. Same that they told me but when I brought up the air mattress they said the bed sores weren't bad enough. Makes me think they can't get one as they had supply issue with his bed tray. That took a month. We would be in trouble at this stage without the bed tray.

Jo C.

Lgw, part of Medicare criteria for alternating air pressure mattresses is, Stage 3 or Stage 4 pressure ulcers that have not responded to treatment over a certain period of time. However; Hospice is not bound to Medicare rules if they feel the patient needs a particular level of care or care item.

It may be that the pressure sores are low level and are responding to treatment. If able to be done, turning him every couple of hours or so would help air to get to the skin. Failing the provision of an alternating air pressure mattress, it may possibly be helpful to have flannel sheets which would be absorbent for the problem of his sweating skin that develops heat rash. Just a thought.

Often, a UTI has no overt pain or discomfort; your observations caught it and that is good. If Hospice staff does not wish to use an indwelling catheter due to concern re a repeat UTI; then would they consider providing condom caths? Sometimes these do not stay on well, other times they do; it is something one must actually try to ascertain whether it will be helpful or not.

If at any time you feel that your RN is not responsive and you are concerned about care, you may call the Hospice and request to speak to the Nursing Supervisor or even the DON.

I send warm thoughts your way; this is a very difficult and emotional time and you are trying very hard as a loving wife and loving advocate to do the best that can be for your beloved husband. Let us know how you are, we care.

J.

Marta

Yes. At end of life there can be incurable pressure ulcers- they don’t heal in spite of state of the art care. These are terminal ulcers and are due to failure of the skin as an organ.

I’m so sorry you are in this situation. It looks as if you are doing everything you can for your loved one.

Jo C.

Lgw, I am thinking of you and wondering how you are doing.

J.

Lgw

Not good. We got the adjusting air bed so that part is easier. Now he keeps trying to stand up to go somewhere. I am tired!!

Ed1937

Lgw, it sounds like you need some respite. Is there any way you can get away from it all for a few hours or a few days? Sometimes just a short break helps.

Lgw

I think I might ask for it soon. I'm tired!