Kennedy ulcers (bed sore.) Anyone familiar with them?

[floridafam]

I think my dad might have one. He hasn’t really moved since early July and is bedridden. He had a small sore on his lower back last week and it has quickly developed into a pretty severe wound that looks like something called a Kennedy ulcer. I never knew there was such a thing. He has declined rather quickly over the last few weeks and we are trying to get him moved to a skilled nursing facility. I’m afraid he won’t survive the move.

 

[easyas123]

I'm sorry, not familiar with them...with that being said, who exactly has been in charge or overseeing his medical situation since he became bedridden in July? Assuming nursing home/in home nursing or hospital - then I'd be speaking to a supervisor immediately to get to the bottom of the situation. If it's been a family member - then they've either been neglecting the situation OR they are overwhelmed and probably need assistance, from other family members or outside help. In that case I'd be offering up to help ASAP.
If he lives by himself and family has been coming and going and no one has done looked into the situation further while your father has been laying in bed for the last 4-8 weeks then - yeah, outside help or assistance from family is warranted.
I hope you are successful in getting him into the skilled facility you are trying for and the wait is minimal. If you think his situation is dire, perhaps a discussing with his Dr. about being admitted to hospital for treatment may be needed immediately. Or maybe it's time to call for a ambulance?
I wish you luck, hope your father is able to receive the care he needs.

 

[AgentMama]

What makes you think it's a Kennedy ulcer and not a decubitus ulcer?

 

[floridafam]

I'm sorry, not familiar with them...with that being said, who exactly has been in charge or overseeing his medical situation since he became bedridden in July? Assuming nursing home/in home nursing or hospital - then I'd be speaking to a supervisor immediately to get to the bottom of the situation. If it's been a family member - then they've either been neglecting the situation OR they are overwhelmed and probably need assistance, from other family members or outside help. In that case I'd be offering up to help ASAP.
If he lives by himself and family has been coming and going and no one has done looked into the situation further while your father has been laying in bed for the last 4-8 weeks then - yeah, outside help or assistance from family is warranted.
I hope you are successful in getting him into the skilled facility you are trying for and the wait is minimal. If you think his situation is dire, perhaps a discussing with his Dr. about being admitted to hospital for treatment may be needed immediately. Or maybe it's time to call for a ambulance?
I wish you luck, hope your father is able to receive the care he needs.

He is under hospice care and he has caregivers there throughout the day. He is being turned and cleaned but these can get bad really quickly, sometimes within hours of noticing even the slightest sore-from what I’ve read. He is in an independent living facility with medical care on site. Hoping to get him moved soon. Everything is happening so fast but he is getting great care.

 

[floridafam]

What makes you think it's a Kennedy ulcer and not a decubitus ulcer?

Not sure. Just started reading about bed sores last night because I couldn’t sleep. I could be wrong but it’s on the sacrum, has a pear shape, got bad quickly, the color matches what was described, etc.

He had some minor pain in his shoulder in July and it just went downhill from there-he stopped walking, showering, and had to have a permanent cath placed. I’m afraid to tell him he might be moving. We only moved him into his current plac in March and he likes it. He is 91 and he very well may will himself to die rather than go to a nursing home. He has said as much his whole life.

 

[Pea-n-Me]

Is this just something you read about online? ETA posting at same time, I see you answered my question.

 

[floridafam]

Is this just something you read about online? ETA posting at same time, I see you answered my question.

Yep. Couldn’t sleep because I was worried about him. He’s getting care but he is in hospice so he won’t be going to the hospital. I’m going to reach out to his care team tomorrow. He’s 1000 miles away, unfortunately. I have been to see him but not in the last fe weeks. It’s happening really fast. My siblings and other family members are near him.

 

[Pea-n-Me]

Long time nurse who’s also cared for my mother (and MIL/FIL) at home through hospice and passing.

I’m sorry to hear of your father’s situation.

Whether it’s a DTI vs a KTU is a bit of a moot point, really. He’s got something going on, and (it sounds like) he’s dying.

His wish is that he not go into a nursing home.

I’m not so sure you have to move him. It sounds like he’s getting medical (nursing) care where he is. Hospice, at least where I live, means life expectancy is under six months.

So regardless of what type of skin ulcer it is, the likelihood that it will be cured at this point is probably unrealistic.

If it is a KTU, it means that the dying process is advanced, and blood with its healing properties is going to places it’s needed more like the heart and brain. Some experts want to call it ‘skin failure’, just like any other organ failure (as skin is an organ).

If it’s a regular DTI, it means that nutrition is probably poor (dying people don’t want to eat), there could be some moisture there, increased body frailty, and decreased movement off of the area. It might help to make sure he’s turned off that open area frequently so the blood circulation he does have can get to that area. When they lay on it constantly, they lose circulation. Again, it would be difficult to heal it at this point. But they can still keep it clean and keep him as comfortable as possible by turning him side to side using pillows for support. If hospice staff aren’t there that often (usually every two hours or so), then maybe either family/friends can supplement or you could hire someone to stay with him when others aren’t there. Ask the hospice team about it.

I know it’s not an easy thing to do, or deal with. We were fortunate Mom was here with us and were able to keep up with her turning as a family.

If it is a KTU (which I think are pretty rare), things may continue to advance very quickly. Hugs.

https://www.woundsource.com/blog/what-kennedy-terminal-ulcer

 

[fla4fun]

Yep. Couldn’t sleep because I was worried about him. He’s getting care but he is in hospice so he won’t be going to the hospital. I’m going to reach out to his care team tomorrow. He’s 1000 miles away, unfortunately. I have been to see him but not in the last fe weeks. It’s happening really fast. My siblings and other family members are near him.

Sorry you are going through this, especially at a distance.

 

[Pea-n-Me]

I would also ask the hospice team where they think he is in the dying process to help know whether to move him or not.

They have a chart of things that happen (roughly) at each stage, and I found it very helpful.

If he’s very close to the end, and it becomes too much for others to handle, then he might not even be alert enough to know he’s moved. You could consider a ‘hospice house’, which is different from a nursing home or skilled care facility and more suited to the needs of the dying patient and family.

 

[princesscinderella]

@floridafam For you at this time.

 

[floridafam]

What makes you think it's a Kennedy ulcer and not a decubitus ulcer?

I think I am wrong about it being a Kennedy ulcer. That's what I get for looking at the internet in the middle of the night. It must be a really bad bed sore. My brain is so tired.

 

[Pea-n-Me]

I think I am wrong about it being a Kennedy ulcer. That's what I get for looking at the internet in the middle of the night. It must be a really bad bed sore. My brain is so tired.

I mean, it could be, who knows. Hard to say from here. Are you dealing with his care from afar? Or are your siblings? It’s hard to hear all this stuff and be so far away. I can see why you’d be looking things up trying to figure it out. Is it possible for you to visit? It might help lessen some of your anxiety about the situation. Try to be there when the hospice nurses visit.

 

[floridafam]

I usually speak with one of his caregivers daily. They are giving him morphine for pain and I think it’s causing some slurred speech. My siblings visit and so do other family members.

It’s so weird. That one day in July, he decided not to walk down to the dining room for lunch and my brother said to me “I think yesterday was the last time he walked down to lunch” and it was.

 

[Pea-n-Me]

I usually speak with one of his caregivers daily. They are giving him morphine for pain and I think it’s causing some slurred speech. My siblings visit and so do other family members.

It’s so weird. That one day in July, he decided not to walk down to the dining room for lunch and my brother said to me “I think yesterday was the last time he walked down to lunch” and it was.

I know. The “lasts” are difficult. My mom was getting worse over the holidays. I bought her some egg nog and a cider donut, which I knew she enjoyed. She took a little of each and choked a bit on them, and that turned out to be the last time she ate.

It’s very hard to lose a parent, even when they’re in their 90s. People will say you were fortunate to have them for so long, and you/we were, but they’re still your parent, and it’s still hard to let them go. Emotions can run deep. I remember telling one of the visiting nurses who came in (for a wound consult, ironically enough) when she got a little, what I thought was, insensitive, that “it’s different when it’s your own parent”.

If you want to read or watch some things that might be helpful, Dr Atul Gawande is someone to look into.

There are also some hospice nurses out there publishing their content, and some may find that helpful, too.

I’m available by PM if you want to talk more offline.

 

[cabanafrau]

Sending you good thoughts in a difficult time.

 

[easyas123]

He is under hospice care and he has caregivers there throughout the day. He is being turned and cleaned but these can get bad really quickly, sometimes within hours of noticing even the slightest sore-from what I’ve read. He is in an independent living facility with medical care on site. Hoping to get him moved soon. Everything is happening so fast but he is getting great care.

I'm so glad to read you are happy with the care he is getting. I think Pea-n-Me has a lot of good points with the hospice care...I only have one experience with hospice, and it was a good one. I'm sure your father appreciates you looking out for his best interests, that must bring him a lot of comfort.

 

[floridafam]

He saw the hospice nurse the day after I posted. I believe he sees the nurse again tomorrow. He has very slurred speech. He is getting morphine and Norco at the same time. I’m wondering if that is contributing to the speech issues.

 

[floridafam]

The hospice nurse just called me and said that she believes that he is entering the final stages of life and they are increasing his Morphine and taking him off the Norco. He will be getting all liquid morhpine. He is in a great deal of pain and she did say that he does have a Kennedy ulcer. It could be a matter of days before he passes and he would not likely survive the move to skilled nursing. Even transporting him would be physically and emotionally traumatizing. Thank you for all of your help and prayers.

 

[MommaKetch]

Sending you hugs as you go through this time.