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I am a live in caregiver for a gentleman who is known by family and friends to be stubborn, quiet, and did I mention stubborn? I have lived with him and his wife for 2 years now and have struggled breaking through with him. He challenges most anything I tell him must be done (going to the bathroom, changing his soaked brief, moving around, following drs orders, etc). He will sit in his recliner all day. He suffers from CHF so he has edema in his legs which cause swelling and wounds but he refuses dr orders to elevate his legs, tells the doc he is fine and need no help. So then comes bedtime, he will amuse me and let me help him into bed but stays there only an hour or two (if he complies) to which he moves to his recliner to sit there till the next night. His bottom is now breaking down after these past two years of this constant battle. We have gotten him new mattresses, asked him why he wont stay in bed (usually no reply), the doc has told him he needs to go to bed, has prescribed him sleep aid… nothing works. He fights tooth and nail on this. But I feel like I am not doing my job as I watch his bottom break down. He has a adjustable bed to where it can be lowered to the ground… is this an option at this point to prevent this breakdown from getting worse or is that defined as entrapment? He is completely incontinent and a fall risk, so check and changes could be done through the night. I just dont know the ethical side of this issue. I am exhausted, the family just says “he is stubborn, let him do what he wants” or “do what you need to do” but this is on me I feel. I can't let someone sit in urine and feces and say “let him do what he wants." Same I feel applies to bottom sores. Any advice would be appreciated.

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Yeah, I think you need to get him out of the house before you get blamed for his future sepsis. It’s all fun and games while the family said do what you have to do, but once he gets infected bedsores, they will come after you. It’s human nature.
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BlueDew Mar 7, 2024
Thank you for the caution. I come fully prepared with legal documentation with the doctor and family. With my small sized breakdown experience, I have healed many little ones on him over the past two years, and would know the moment to call a professional wound nurse as the doctor monitors it as well. Just looking for ideas on how to break through this dilemna.
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All I can provide to this conversation is you are not alone in your feelings. I am new to all this and all I can tell you it is the hardest thing I have ever had to do is care for my dad. My dad is demanding, wants what he wants how he wants it, makes horrible comments about people on the tv, only watches game shows all day and I could go on and on. But he is my father.
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BlueDew Mar 7, 2024
You are not alone either! I have dealt with many stubborn clients, and each give me new challenges that I seem to always want to figure out. This one has been a tough one, I dont envy anyone in this type of situation. Hang in there and make sure to take care of yourself!
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Call his doctor now and get an in home woundcare nurse. If that is not possible, call 911 andvget him to the ER. Time for this man to be placed in LTC and once in the hospital, a good time to have him transitioned to one.
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BlueDew Mar 7, 2024
His doctor is involved. His skin is breaking down (red) with a small wound opening that is being treated with barrier cream per the doctor. Just looking for ways to get him into bed or relieve his bottom.
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I quite honestly think that this gentleman is now beyond home care. His skin will break down, he will form decubiti that go to the bone, he will get sepsis and die.
This may be the outcome for him in care as well, as his heart is failing in the BEST of circumstances and his circulation impaired. But the truth is that this is now too much for you to be responsible for, and as caregiver, you ARE responsible.

It is time to discuss this with family.
They need to understand that decubiti KILL. As they may already know this they may still believe he is better with home care than in a nursing home where he still may get decubiti, and may in fact even die more quickly.
But this is something then that needs to move to hospice which will be a help to you, and will cover the bases to get wound care nurses in even in a comfort care situations. Decubiti are considered neglect often when APS comes in; in fact faclilities even to hospitals can lose licensure when there are too many reports of same.

This is beyond your handling alone now as a caregiver.
I am so sorry.
Discuss with family conference. And you may be forced with having to resign this care.
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Throw out all his cloth undies and provide only disposable briefs.

If he strips his clothes off, they make anti-strip one-piece outfits for people that do that (Silverts.com, "adaptive clothing").

Get zip-up pressure socks for his legs.

Extreme stubbornness is an early phase of dementia, not a personality trait. I'll bet you can't "reason" with him... this is absolutely a symptom of dementia. You can choose to have this discussion with the family so that they can make a decision.

He may have a tantrum like a toddler when he finds out his cloth undies are gone but now you can start using "therapeutic" fibs... "They're all in the wash so you need to wear these for now."

Does your written contract outline the limits of duties you can perform in that home? If not, this is a problem. Do not do anything that isn't outlined in the contract even if he or the family asks you to do it. If there's no written contract then surely don't do anything you don't feel confident or comfortable doing -- especially lifting them (never ever attempt to lift them off the floor, instead call 911 for a "lift assist").
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Taking this in a different direction - they do make pressure relief overlays specifically for recliners, ranging from simple gel pads up to alternating pressure ones
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Grandma1954 Mar 7, 2024
I did not know this!
Perfect, I know people that "have" to sleep in the recliner.
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Lowering the bed as far down as it will go is NOT confinement.
This is done commonly in MC as well as SNF for people that are fall risks.
Place a matting or padding when you do lower the bed so that if he does get out of bed and end up on the floor (and he will end up on the floor) he will not get hurt.

Honestly if the recliner chair is m ore comfortable to him I would let him sleep there.
The problem really is that he should be repositioning every 2 hours.
If the mattress he has is an alternating pressure mattress that might have helped the pressure sores.

If the pressure sores are such that he should be getting "professional wound care" it might be time to place him in rehab so that he can get the specialized care that he needs.

A side comment though...Have you REALLY talked to him about what HE wants?
With a diagnosis of CHF and pressure sores and being non compliant with many of the doctors orders it is possible that he would be eligible for Hospice.
Hospice WOULD deal with the pressure sores. Hospice does treat things like that as well as other conditions that may arise.
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BlueDew Mar 7, 2024
Thanks for the tips. The problem with the recliner is he sits in it. Does not recline, ever. So when he lays in bed, it relieves the swelling in his legs and gives the option to be off his bottom. He has been asked by Drs, Family and myself what he wants and they all get a shoulder shrug. No joke. But when asked if he needs help with all these issues he says he is fine and they deem that an acceptable answer, the doctor included and leave him alone. This peanut sized skin breakdown is on his lower bottom (his Dr is aware of this), so obviously I am treating it how we would in a SNF to start, barrier cream. It seems to have halted the growth for now, but I just keep coming back to this situation again and again and again over two years and I need options if I am gonna continue taking care of him. So thank you again!
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When he gets bedsores that go too far and he becomes septic, that same family who are telling you to “let him do what he wants” will likely be blaming you for being negligent in his care. They don’t seem to realize the consequences that will certainly come from skin breaking down. This has become more than you can safely handle on your own, not your fault. In the same situation I’d inform the family that I could no longer provide the level of care he requires on my own
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Isthisrealyreal Mar 7, 2024
Not to mention that bed sores are considered neglect legally and this could end very poorly for the caregiver if/when he ends up in the hospital.
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Are you a private caregiver or are you with an agency? No, you cannot allow someone to sit and feces and urine all day.

How old is this gentleman? Does he have dementia? If the client's family is content with him acting in this manner, you were forced to accept this dysfunctional way of nursing a client. This is a form of enabling. Have you reported this skin breakdown to the agency if you are with one. Bedsores are dangerous and if left untreated can go directly down to the bone. He needs wound care immediately.

The other ethical side would be to report this to Adult Protective Services as self-neglect on his part for being non-compliant to doctor's orders and refusing proper nursing care to avoid these problems he is now experiencing. Does he have a nursing care plan in place?
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