My brother lives with our Dad, they are 90 minutes away, IF there is no traffic. Dad was diagnosed, and had surgery for, glioblastoma brain tumors in April. He was released home, to my bother's care, on April 26th. I've been going up Sundays-Tuesdays to help take care of Dad so my brother can get out of the house and take a break.
My brother and I don't get along well, we had horrible fights while Dad was in the hospital. I didn't start going up right away, but we'd managed to keep a truce going so I started going up to help in June. Mostly because I go up, don't say much about what I see, and don't ask questions. But things have changed and it's really hard not to speak my mind. My Dad's symptoms, he is 75, have returned and both my brother and I feel he's getting very close to passing. Up until now, my father didn't want hospice and even though I advocated for it early on, my brother backed my father's wishes (which, admit, I was also willing to do initially).
My father has developed a sore on his back that festered. It took my brother forever to take my Dad to the doctor (admittedly, my Dad fights going anywhere) and he was put on antibiotics and sent home with instructions to change the gauze every day. This past weekend, the antibiotics ran out, though I found two on the floor around his bed, along with other pills not taken. My brother cancelled the follow up appointment on 4/27, stating he couldn't get Dad to the doctor, but then told me the wound was festering again. I have suggested, told, informed, begged, for him to call hospice (even got Dad's permission!) because if Dad can't get to the doctor, my understanding is hospice can arrange for care at the house. As of Friday, he still hadn't called and when I questioned him as to why, he became very angry and we had a fight resulting in his hanging up on me.
My Dad is very close to death. How close I'm not sure because he still consumes a small amount of food and fluids each day. He sleeps most of the time, but is awake and "with it" enough to tell you he has no desire to wear Depends, even though his incontinence is bad enough to soak the linens once a day or more. He is now having problems swallowing, which makes pill taking more than difficult. His dexterity and ability to concentrate on simple tasks is reminiscent of his post-surgical stay in the hospital. Also, his speech is more and more slurred each day.
So that's the brief history, this (these) is (are) my problem(s) and I'm hoping you all can help me work through it:
1. I don't understand why my bother won't call Hospice, even though they can help with many of the issues around my Dad's care. If I push on this issue, my brother becomes angry and volatile. In response, once he starts cussing at me, and after keeping my cool for about 3 attempts, I will start yelling back (and cussing, too), none of which is productive.
2. The wound on my Dad is festering again the first time it got bad really quickly. I don't know how much time my Dad has, but I'm worried the infection is bad for his already compromised immune system.
3. I'm afraid to go up tomorrow (Sunday) to help care for my Dad because: a) I can't provide the kind of care he needs by myself, and b) I'm now concerned (again) to be alone in a house with just my Dad and brother. I've never been concerned about him deliberately hurting our Dad, but me? I can only be there if I'm not questioning anything.
4. Isn't this negligence? Though I'm willing to support my brother weekly to give him a break, I'm not willing to support medical negligence.
5. Maybe Dad is close enough to passing that treating the wound is irrelevant, but a medically qualified person should diagnose that, right?
6. Back to question #1, WHY WON'T HE CALL HOSPICE?
And before you ask, my brother has primary care, is Executor of the will, AND has POA. He is there with all the history, the meds, everything, I think he SHOULD be the one to call. It comes with the position. Yes, I could call. BUT, this will result in the likelihood of not being able to go up and see my Dad at all. Not only will my brother portray it that I am a troublemaker, but my Dad will agree with him and be angry with me, too (yes, they are that tight).
One could argue that Dad being angry with me is a fare exchange for getting him some of the care he is currently lacking, but if he is close to passing, is it worth starting a war? Which brings me back to my issues with not having Hospice on board.
I'm so close to this and have been through it so many times, I'd really appreciate some thoughts and advice.
A hospice facility would be a totally different situation but with it's own set of challenges.
I think the father sounds like he would benefit from hospice but since the brother lives there and is the primary caregiver I feel like he has to be on board with it.
But let's say that zebra calls in hospice without her brother's consent and/or support. Hospice has to go to the house (where the brother and the father live) to assess the father. How is hospice going to get into the door if her brother is so against it? And if the brother is as volatile as zebra alluded to why purposely antagonize him by ambushing him with a doorstep full of people from hospice? Zebra's hesitant to go over there as it is now.
I sympathize with zebra and I'm sure she's very frustrated. She should have some say in the care of her father but as long as her father is living with her brother and her brother is the primary caregiver her hands are tied when it comes to bringing in extra services to the house if the brother doesn't want them. I'm not saying I agree with the brother. Hardly. But it's his house (or if it's not his house then he is at least living there while caring for the father) and zebra can't force her brother to participate in hospice services for their dad.
I guess the questions to my brother should be, "Is this your interpretation?", "Is not having antibiotics okay with Dad?", AND, "Does the doctor have a copy of this and is it being interpreted the same way by her?" Does that seem correct?
Because if the doctor doesn't interpret it that way, we're back to square one. Though it may be a moot point because he hasn't delivered a copy of the document to her. The only reason I have a copy is because I took pictures with my phone.
I think the wording is actually open to interpretation, depending on the patient's diagnosis and what will merely ease his/her pain and discomfort but does not address curing a specific condition. Whether that would include antibiotics is something I don't know. But I'm sure others here have had more experience and could provide a more helpful answer.
But you're on the right track. Good for you!
"If I should be in incurable or irreversible physical condition with no hope of recovery, I do not want any treatment that will merely prolong my dying. Thus, I want my treatment limited to medical and nursing measures that are intended to keep me comfortable, to relieve pain and to maintain my dignity."
I thought that meant no more chemo or radiation and pertained to his actual cancer diagnosis. Does that wording include no antibiotics?
You have to be sure, or you panic and call 911 and Hospice stops services.
Zebra wrote that her brother has a "POA" but didn't state whether it's medical or durable. Regardless, he would have a fiduciary capacity to carry out any responsibilities in a legal and proper manner, and I would think that he's not doing so, whether willingly or because he's not able to see clearly.
I'm not sure though that having his father living in his house gives him so much control that he alone can sign up for hospice.
Just interested in hearing your thoughts on this issue.
You said your brother and your dad are very close. Maybe your brother thinks that calling hospice is like pulling a trigger and that once your dad is on hospice he is "officially" dying. Or maybe your brother feels as if he will have to relinquish control to some outside service. Of course that isn't true. We know that but maybe he doesn't. Even if you did make the call to hospice in the spirit of trying to do the right thing I don't think you'd get very far without your brother's consent because hospice would need to come out to the house, assess your dad, and have a meeting with you and your brother.
"Negligence" is a legal term. Is your brother negligent or is he overwhelmed? Either way the result is the same: your dad not getting the care he needs. However, I work in home healthcare and I see pills on the floor (and in the bed linens and on the table and.....) all the time. Trying to dump pills into the hand of an elderly, sick person is a crap shoot. Short of putting them directly on the tongue or crushing them up into some applesauce and spoon-feeding them, those little pills just may not make it into the mouth all the time. It happens.
Since you're going tomorrow, take a package of Depends with you. This is a situation where you can do something. Urine soaked underwear, linens, and skin is unacceptable. Call them "underwear" or an "undergarment". Never "diapers". Just don't give your brother or your dad a choice. The first time you have to clean up an accident tomorrow do what you have to do and then finish by putting your dad in some nice, dry Depends. Letting someone lay around in wet clothes and linens IS neglectful and there is an easy solution to that. If dad is going to have the privilege of staying at home and have his children care for him then he has to make a few sacrifices along the way.
Failure to administer the antibiotics for the pressure sore could be considered negligence, even if your brother claims that the sore was at the time healing and he didn't feel it necessary. It's not his call to make, and is another reflection of his inability to make a rational decision.
As to your specific points:
1. Your brother may be in a state of fog to the point that he can't think. He's just too close to the situation. I have the feeling he might just not know what to do and can't think clearly. Those kinds of brain fogs do occur in similar situations.
I think your father should be taken to the ER STAT, but if brother won't do it, ask him to at least contact one of your father's doctors to get a script for home care on the grounds that your brother is unable to move your father for a doctor visit and the wound has flared up and needs real medical attention (not just your brother's "attention").
The intake nurse will see and assess the situation, and may recommend either hospitalization or hospice. But she'll act; it's part of her responsibility and will take you out of the line of fire.
2. I'm also concerned about the festering sore, which could depending on its location and severity result in more medical complications very quickly. Any other issues notwithstanding, this issue demands immediate attention, especially since it appears as though the treatment hasn't been completely given.
3. I would visit tomorrow but surreptitiously observe everything you can that would support either calling EMS or APS (after you leave and from a safe distance if you're physically afraid of your brother). However, your brother's volatility is also a reason to involve APS. But they won't provide as immediate a response as EMS.
Don't even raise the issue of hospice with your brother. And while I don't want to be maudlin, think of the visit as a good one to have with your father because, as you state, he's not that far from his last days.
If there's any chance of taking a photo of the bedsore w/o your brother knowing it, do so, then send it to the doctor with a request for home care if your brother won't ask for it, or send it to APS.
You can also call APS, but it seems you're concerned about your father's negative reaction, and that's a legitimate concern. He probably has enough on his mind already.
4. Negligence? I would say so, in medical terms. Getting technical though the issue might turn on whether your brother has sufficient medical knowledge to even be attempting to provide care. But I would agree it's grounds to involve APS.
5. Right., 100%.
6. See No. 1 above.
I would make a call to a hospice service in your area and ask to talk with someone who could advise you on your next best step. Make notes ahead of time. Brother living with and caring for dad...brother has POA...you aren't getting along well with brother right now because you disagree with his healthcare decisions...dad's diagnosis...his bedsore getting worse...not wearing diapers and wetting his bed, lying in urine...your belief dad is very uncomfortable and needs hospice...brother's refusal to even consider it. Keep it as brief and to the point as you can.
Then follow their recommendations. They may suggest you call Adult Protective Services. They may tell you to leave it alone. They might suggest their contacting your brother. Or something else. It's not their first rodeo. They'll get it.
If you can't get satisfaction from hospice and you really believe your dad needs better care, then Adult Protective Services it is.