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They appeared to have done the right thing outside of notification. He may have episodes of agitation but he may be calm and reasoned with most of the time. They have to test for another infection because of the outward signs. Even if he tested positive for a UTI earlier and was just treated for it, the hospital will test it again since it may be a different bacteria this time. A different bacteria may call for a different antiobiotic.
Back to the hospital in Boston. After pulling the PICC line, doctors were concerned about infection. Over the past couple of weeks his anxiety and anger have increased.
I go to visit him in rehab Friday morning. As I'm walking around the nurses station I see my aunt and cousin visiting. I get stopped and am asked if anyone told me my Dad was being brought to the hospital in Boston? Let's just say the next hour I was calling his PCP, talking to the head nurse, director, everyone. I was not happy not having been called. And my mother with proxy wasn't called. So here's someone with what we believe is delirium if not something worse, and they deem him competent to sign papers and make his own decisions when he exhibits such confused states? He was trying to kick nurses and slamming doors Friday morning. They moved the one on one nurse out of the room as well as his roommate for safety.
So now he's back in Boston, confused as ever. They want to look to see if another infection is in him. They want to determine if the PICC line needs to go back in. We all want to know what's going on.
Frustrating to the nth degree. And only 2 1/2 weeks until the end of tax season.
Wow! That sucks!
Once the hospitals here knew that I had POA as well as Healthcare POA, I got called for all major issues.
The nursing home didn't call me before sending my mother to the hospital, but did call as it was being done (her lung had collapsed, so an emergency).
And my mom was pretty damn lucid. However no one wanted to tell her what was actually going on, so they just told me and let me make the decisions. Not a fun time.
I hope they can find the cause of your father's behavioral issues. It could be that the medicines are causing some of it (or interactions between the medicines). Or it could be infection (such as UTI). This may delay his ultimate discharge a bit, so that should give you a little more time to get things prepared. (Hardly a silver lining, but something I suppose)
Hoping you (well, all of us really) survive tax season! At least you'll be uniquely qualified to help your parents with those kind of issues. [Filing taxes for my parents was really the first time I got an actual look at their finances! Not a fun learning curve!]
I think you need to hire a private caregiver to spend time with your Dad each day. SOmeone to help with his personal needs and sit with him a bit. Then you could cut down on your visits just bit, and you'll feel better knowing there is someone there looking out for his needs when you're not able.
Ask the director of the rehab for recommendations.
The OP is taking his mother to visit. If it were just his own visits, I would agree. But when my own father became ill, my mother drove to see him every single day. It would have killed her not to be with him.
So I understand that the OP is going not just out of his own sense of obligation, but to enable his mother to be with her husband.
OP - you could look into taxi-service or something to give yourself a break? Although, since you're in the midst of a new-crisis (new hospitalization) this might not be the time (in general no paid representative is going to have as much vested interest in the information as you are)
But once things calm down again, getting some alternative transport for your mom might be a good idea at least a couple of times a week.
I won't bore you with the details but your situation is what we are going through now with my Mom. She was previously an independent living 87 year old. She had necessary heart surgery that took an unexpected turn so instead of a week stay it became almost a month in the hospital. She was also delirious at times (have them check your Dad for a UTI - it makes some elderly people crazy) and was shouting that she knew something was going on behind her back - we weren't telling her anything and so on. Two days after transferring to rehab care - her mind is 90% back to what it was a month ago. I never thought that person would ever exist again.
It is an ongoing process - that none of us expected to deal with or have dealing with it be like this.
I am lucky to have a cousin and brother who live closer than I do - and they have done the BULK of what needed doing this past month.
She is "supposed" to be discharged on April 10 - I am not looking forward to dealing with all the paperwork and authorizations and nightmare that is our eldercare system.
There SHOULD be a class we all take in our 40's to learn how to care for all this entails - but of course - the rules would change before we are forced to deal with it.
Wishing you all the best.
I promise you that, as a RN in both ICU and the ER, we ALL wish there were classes for families to take who are not 'medical'. The main problems are that families do not discuss any 'end of life care' they would want between themselves when they are younger, so when someone has an accidental illness or a critical one they are all floundering as to what to do. IF there was a class(es) nobody would take them BEFORE they needed them, as there would have to be some type of charge to take them and again, people are in denial about what happens when we get old and get ill or have a major surgery. TV doesn't help one bit, as it shows people pretty much calmly closing their eyes and dying, swiftly. HA! More times than not, it isn't that way at all, and ESP it doesn't always happen like that when someone is 'removed from life support'. Classes are a nice thought and the medical community would VOLUNTEER en masse to even teach them...that is how badly we wished they existed.
OP is VERY frotunate that his is the 'leader' and isn't arguing and fighting with other siblings about what to do and when to do it. I could write a few books on family dynamics when a loved one is very ill and possibly an award winning screenplay.
I promise you that, as a RN in both ICU and the ER, we ALL wish there were classes for families to take who are not 'medical'. The main problems are that families do not discuss any 'end of life care' they would want between themselves when they are younger, so when someone has an accidental illness or a critical one they are all floundering as to what to do. IF there was a class(es) nobody would take them BEFORE they needed them, as there would have to be some type of charge to take them and again, people are in denial about what happens when we get old and get ill or have a major surgery. TV doesn't help one bit, as it shows people pretty much calmly closing their eyes and dying, swiftly. HA! More times than not, it isn't that way at all, and ESP it doesn't always happen like that when someone is 'removed from life support'. Classes are a nice thought and the medical community would VOLUNTEER en masse to even teach them...that is how badly we wished they existed.
OP is VERY frotunate that his is the 'leader' and isn't arguing and fighting with other siblings about what to do and when to do it. I could write a few books on family dynamics when a loved one is very ill and possibly an award winning screenplay.
In my case, I "took over" the core responsibility for my father when this all went down. My brother is not capable anyways, and my mother agreed to let me have point. I discuss things with her and my daughter (who is a nurse) and find out daily what the status from the doctor/nurse perspective is.
I have seen many times with friends and other family exactly what you say, other family members tripping over themselves and arguing and making matters worse. All I care about is to make sure my Dad is getting the best care possible. Must stay positive, also knowing what we don't know right now could be scary (or not). I consider all possibilities, but feed the medical world any observations or information I have to help them do their jobs.
A few more days and tax season will be over with. I hope the stress on you lessens when that happens! Your parents are quite fortunate to have you as 'lead dog'!
I promise you that, as a RN in both ICU and the ER, we ALL wish there were classes for families to take who are not 'medical'. ...... IF there was a class(es) nobody would take them BEFORE they needed them, as there would have to be some type of charge to take them and again, people are in denial about what happens when we get old and get ill or have a major surgery.
I think this should be part of the regular public school schedule. Starting in high school. There are many "older" first time parents this day and age - which means "younger" people faced with elder care. We hope we all live long enough to need elder care - and we have no idea what to do when it comes - for us or our family.
I spent many wasted hours in classes that now have ZERO importance. I should have had a few semesters in "Life Decisions and Family Care"
Last night I received quite a wake up call at 2:45AM. The rehab. The nurse tells me they couldn't calm Dad down. He was naked, peed in the closet, scared his room mate, was threatening people and swinging, and wouldn't let anyone near him. They asked me to call and speak to him. They were hoping that maybe a familiar voice would help. I called back the room phone and the nurse picked up telling Dad it was his son Jon. "Keep away from me" in an angry voice I heard. Finally she coerced him to speak to me.
"Who is this?" "Your son Jon" "Who?" "Your son Jon". Then he realized who I was and he talked. He said I was the only person in the world who knew what he was going through. He said how he knew he had an infection and was sick, and he said he couldn't stop the anger even though he wanted to. He said he was keeping people away because he was fighting whatever it was that was making him think he wanted to kill himself. It was surreal. It was lucid. He had fears people were going to put him away forever because he was mad/bad, mentally ill. I told him that all people wanted was to get him better. He was deeply bothered that others viewed him as, not in his exact words, but a mental case. I told him that was not the truth - I said everyone knows when you get that way it's not your fault, you are not acting that way by choice, you are sick and this is a part of the sickness. A few more mushy words, and I think he calmed down, as he did tell me the anger was subsiding and he wanted to make it right. So when the nurse got back on the phone, where she originally wanted me to drive up there to try to calm him down or she would send him back to Boston, instead said for now things OK and he was cooperating. Guess I'll go back to bed and hope the phone doesn't ring again.
In my visit tonight with my mother, he was just OK. My mother does aggravate him, because she really doesn't know how to deal with him on the mental level, and she admits it.
This is such an agonizing journey these past two months. And I see no defined end in sight.
Last night I received quite a wake up call at 2:45AM. The rehab. The nurse tells me they couldn't calm Dad down. He was naked, peed in the closet, scared his room mate, was threatening people and swinging, and wouldn't let anyone near him. They asked me to call and speak to him. They were hoping that maybe a familiar voice would help. I called back the room phone and the nurse picked up telling Dad it was his son Jon. "Keep away from me" in an angry voice I heard. Finally she coerced him to speak to me.
"Who is this?" "Your son Jon" "Who?" "Your son Jon". Then he realized who I was and he talked. He said I was the only person in the world who knew what he was going through. He said how he knew he had an infection and was sick, and he said he couldn't stop the anger even though he wanted to. He said he was keeping people away because he was fighting whatever it was that was making him think he wanted to kill himself. It was surreal. It was lucid. He had fears people were going to put him away forever because he was mad/bad, mentally ill. I told him that all people wanted was to get him better. He was deeply bothered that others viewed him as, not in his exact words, but a mental case. I told him that was not the truth - I said everyone knows when you get that way it's not your fault, you are not acting that way by choice, you are sick and this is a part of the sickness. A few more mushy words, and I think he calmed down, as he did tell me the anger was subsiding and he wanted to make it right. So when the nurse got back on the phone, where she originally wanted me to drive up there to try to calm him down or she would send him back to Boston, instead said for now things OK and he was cooperating. Guess I'll go back to bed and hope the phone doesn't ring again.
In my visit tonight with my mother, he was just OK. My mother does aggravate him, because she really doesn't know how to deal with him on the mental level, and she admits it.
This is such an agonizing journey these past two months. And I see no defined end in sight.
As agonizing as that was, isn't it possible that it was some good news - as clearly, he does still have some mental capacity and hopefully if the aggravating factors (infections, etc..) can be cleared up, possibly he will be able to regain his higher level of mental function?
Which doesn't at all minimize how awful a situation this is.
I am so hoping they can get your father well again. I feel bad for him suffering, and for all that your family is having to go though.
10 more tax days!!
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