Caretaking 102 - The Aftermath

@ Joanne: Thank you for the suggestion. I will definitely ask about life skills retraining when I meet with the team tomorrow. Bernie needs to take more responsibility for himself and that could defininetly help.

I spoke with him a few moments ago. He got the water he wanted and sounded much more lucid than he did earlier in the day. I plan on making periodic follow-up calls to him to remind him to drink.

Can't it be arranged for him to always have a bottle or pitcher of water available to him and refilled frequently so that he doesn't have to ask for it? That would seem to be a no-brainer, especially in a case where there has been concern re dehydration.

With most of us younger folk, the visual stimulus of the jug and glass is a reminder to pour and sip. Older blokes tend to not want to, because it makes them want to wee, and if they have problems in that area then they tend to put it off. (Yeah, I know: self-defeating, but it's an instinct) when you don't have the physical reminders that go with a filling bladder or a growing thirst (often started with the stomach/kidney urges), these thoughts can be put off for longer without you realising.

And, as we carers know, problems down there can muddy thinking and awareness (as blood and brain chemistry change), so the person continues to make more unwise judgements.

Hence the need to develop different habits around grooming and hydration schedules.

@joanne - I totally get that as it was also the case for my father. But I was responding to Joan's report that Bernie was asking for water. I don't think he should have to ask. It should be available to him all the time.

@Joan, I am a retired R.N. with experience working at Kessler Rehab. I am particularly concerned with the fact that Bernie was allowed to sit in his own feces for who knows how long before you arrived. Skin breakdown is a serious condition, especially for a diabetic, and can be caused by exactly that. The fact that you had to request the diaper be changed is appalling. Is the staff checking on him? Also, why does he have to ask for water, agree it should be by his bedside. Is the staff reluctant to have the ostomy bag fill up, so they don't have to bother changing it? Sounds like the level of nursing care needs to improve a bit. When we had patients that needed hydration, we would put a sign over the bed, stating something like "encourage fluid intake", in case the patient forgot to drink enough. I am trying not to be a busy body, but something besides diet is flawed here. Hope you don't mind me jumping in here Joan. Agree with Joanne regarding relearning life skills, or activities of daily living, this is usually done by O.T. This is a rehabilitation hospital as opposed to a nursing home, is that right? Joan, I would offer to give you more support with transportation etc., but have my own physical limitations. So sorry I can't be of more help. Good luck with your meeting, hope you get some satisfying answers, I know you will be happy to get him home again.

+1

The staff seems more reactive than proactive unfortunately. Once an issue is brought to their attention, they do their best to deal with it; but, they don't seem good at identifying the problems on their own without prompting. Once I spoke with the nursing staff about the need to encourage him to drink, they made a note to do so. He now tells me that he is drinking more. I will see tomorrow.

I have a whole list of items to go over during the team meeting tomorrow including in no particular order: diet, hydration, therapy progress. cleanliness, socialization, and life skills training (especially learning to monitor and empty his bags himself). They have to realize that at present he is unwilling (unable?) to speak up for himself and that turns them into having to be mind readers which carries with it its own set of problems.

Maybe Emmie or another nurse can help with question: here, it's best practice now to include the patient in change-of-shift handovers. The assigned nurse will go from patient to patient with the next shift nurse, introducing him/her to the patient and quickly going over what's happened in the last shift, what to watch for in the next. They change the nurse's names on the board at the patient's bed. This gives the patient a chance to say 'I'll need more blankets/help turning/don't understand my medicines' etc.

Does that happen in NJ? It's also best practice to ask about assistance with toiletting and a jug of water every time you see a patient for any reason.

@Joanne, yes we do that here, but not necessarialy going from room to room. It is called giving "report", usually done at the nursing station, detailing the care that has been given, new care that has been ordered and basically what is going on with the patients on the unit, and how they are tolerating said care. When necessary, the nurses go to the patient's room, particularly in the case of explaining new equipment that might be ordered, but I don't think that is required here

Last time I was in the hospital, they did report at bedside. They did not do it in the two nursing home rehabs that my mom was in and only sort of did it last time she was in the hospital in NY. I think that did most of it in the hallway and then came in to the room to introduce next nurse to mom, but mom was so confused etc that I think doing it in the room would have stressed her out.

I'm really concerned about the care he is getting. One thing to find out is if he is assigned to the same aid most of the time. At one nursing home rehab my mom was in where she was severely neglected the aids all just seemed to take care of who ever whenever. In the second one, the patients were assigned an aid for most of the time and then had others that usually had them on the main aid's days off. This offered much better continuity of care since the aid knew what mom could and couldn't do and knew when to push her. They also knew when something was wrong and could alert the nurses. In mom's nursing homes, the nurses mostly just passed meds. It was the aids who did all the care.

do you have someone to go to the meeting with you tomorrow? This can all be very overwhelming and having someone with you to back you up and to help you remember all that was said can be very helpful. We have never met, but you and Bernie have been in my thoughts and prayers.

My DIL is going with me tomorrow. She saw him this evening and agrees that his condition has deteriorated since he was placed there. Our plan is to get him released and sent home ASAP, even if it is against medical advice.

I accidentally got seriously dehydrated recently (in the mountains, in a very dry climate) and didn't realize it. I was surprised at how confused, weak, and helpless I became. And I'm a reasonably healthy person. It was scary.

joan_crystal said:
I wonder what happens with patients whose families do not advocate for them.

I'm single with no kids and few relatives, so these caregiving threads make me wonder the same thing. I really should stop reading them.

Please, don't stop reading! Patient's rights are important and this is why there's usually an Advocate within the facility (I don't mean an attorney, btw). I'm sorry my reply is late: I had to go out.

We still have nursing staff reports/handover. But there's also the bedside handover at every shift that include the patient, any family present, and any other care staff or Allied Health staff present. And everyone's names go on the info board at the bedside. Handover shouldn't be done at door/in the hallway because of privacy concerns.

This practice started because survey after survey showed people didn't know who was coming to talk to them, what they were checking for, what advice they'd given, etc. not only patients felt out of the info loop, families did too. And no-one knew who to check with. Now, each patient can reorient themselves throughout the day by looking at the board (if it's updated) (if the patient remembers).

It's something to discuss in another thread. But Joan, if you think it's helpful for Bernie, perhaps they can install a small whiteboard in his room to help remind him of each day's schedule, the care team, his drinks schedule, etc. It can be a useful tool for developing a new habit pattern quickly.

Emmie: I was told that he would be going to a "sub-acute care facility" for the purpose of regaining his strength through physical and occupational therapy. South Mountain is equipped to provide the physical and occupational therapy and they have been doing so. What they seem incapable of doing is dealing with his underlying medical conditions, especially the diabetes and urostomy. His hospital readmission through the ER was for dehydration and infection. That should have been indicated in whatever paperwork accompanied his admission to South Mountain. Still, they are doing nothing I can see to prevent a recurrence of the dehydration; nor, are they giving him probiotics to offset the effects of the antibiotics. This form of "halfway house" placement may be fine for some but it is not working for Bernie and I don't think transferring him to another such facility would improve matters any. That is why I want to bring him home before he ends up in the ER again.

kthnry said:

joan_crystal said:
I wonder what happens with patients whose families do not advocate for them.

I'm single with no kids and few relatives, so these caregiving threads make me wonder the same thing. I really should stop reading them.

This is precisely why you should keep reading them. These threads contain important information about things you can do yourself to avoid more serious complications should you be unfortunate enough to be faced with the kind of health emergencies under discussion in such threads. You can learn from other's experience how you can build a resource directory of what is available in the community, maintain a record of doctor's medications, medical history in hard or electronic copy that you can provide if nobody is there to provide it for you. Most important, you can learn to build a community around yourself that will be there for you should an emergency arise.

Joan, I am relieved that your daughter-in-law is going with you today. I am also delighted that you are going to get him out of there. I was very concerned for Bernie after you made the "they are reactive not proactive" comment. No, Joan, they are incompetent in taking care of your very sick husband, and they are endangering his life. You tend to be so diplomatic, tactful and concerned not to ruffle feathers that you don't get the point across. I am so glad that you are getting him out.

Haven't succeeded in getting him out yet. I will post again after the meeting.

As you know, Joan. I have been following your blog intently. That you were able to post such insightful comments at this time in response to another poster's concerns is impressive.

While it is certainly not your main purpose there is an importance to this well beyond your personal situation. You should turn this into a book. Because it deals with one of the most important challenges we face. Medical advances have extended the length of life but we have not really figured out how to improve the quality of life. There is a large demographic bump in older people, with much more to come, many with multiple, often unrelated, health issues. And there are not the institutions and infrastructure to deal with it. So there are only available choices that are all in some way a poor fit, hospital, rehabilitation facility, home. None of which itself can meet all the needs required to provide the best possible quality of life.

I do not know where the solutions are. But it will require figuring out some way to blur those rigid lines.

I am not surprised Bernie is confused, as dehydration can lead to symptoms that mimic dementia. Note: this is in people who are normal if they get enough water! That could, in turn, lead to his not being able to advocate for himself or participate more actively in his own care and recovery. It's amazing the effect not getting enough water can have on people. It can also lead to infections, which in turn can add to confusion. It's a vicious cycle.

I hope your meeting goes well and that it includes someone in management at this facility. They seem to have some serious issues to address in how they approach care. I'm just really, really sorry you and Bernie have suffered through their inability to be proactive.

Getting him home might be the best thing you can do at this point, although I would strongly recommend getting more visiting nurses for him if you do that -- as many as you are eligible to get. He is going to need a lot of attention to get back up to speed so he can recover completely.

Infections in people with other health issues can also lead to confusion or symptoms that mimic dementia. We recently had two instances of this with my FIL. He went from totally lucid and of strong mind to very much out of it. The first time we were worried he had a stroke. But as soon as the infection cleared he was back to normal. The second time we assumed that is what it was and it was.

It also sounds like he is suffering from some depression (completely understandable!) which is contributing to his "checking out" as far as self-advocacy, drinking enough, etc. They both need more support all around! Our system is so inadequate to handle the complexities of people in health crisis. Thank goodness he has you, Joan

Joan, have you had the meeting yet? I'm wondering how things are going today...

Meeting sounded good - diet no problem, encourage drinking, add probiotic to combat loose bowls resulting from antibiotics, get him to activities, have him brought to communal dining for dinner, etc. Here is the reality of what I saw after the meeting:

I checked his lunch tray. He got none of the items he requested and what he did get was not acceptable - small chicken leg, pasta, peas, and apple sauce instead of baked fish, rice, carrots and apricots. Kitchen was not able to exchange what he got for what he had ordered despite promise at meeting that they would meet his dietary needs. He did have 2 cups of water in his room but when I went to refill his cup, I found there was no water in the water dispenser in the room next door. He complained that the chest piece for one of his bags was loose and needed changing and the nurse had no idea how to do it. I had to instruct her when it should have been the other way around. Bernie looked very depressed by the time I left, head supported by arm, elbow resting on tray table, slowly rocking himself back and forth in his wheel chair. No interest in doing anything but sitting there. He insisted that he needed to get on the toilet but didn 't want to do it until I left. I started to leave earlier than planned but there was nobody available to help him transition from the wheel chair to the commode. I just hope he didn't go in his diaper again while he was waiting for assistance. This is the reality as opposed to what we were promised at the meeting. My conclusion is that they are not equipped to handle someone with his underlying medical conditions and are unwilling to admit it.

Unit Manager kept saying that if she were me, she would want him out of there as soon as possible. That is hardly reassuring. When I complained to her about the contents of his lunch tray and the unresponsiveness of the kitchen staff, her solution was for me to write a note to the kitchen staff, dietitian, and administrator. Since face to face meetings with dietitian and kitchen manager have not brought about the desired changes, I don't know what good a written note will do. A copy has been affixed to his chart so we will see if it has any impact.

Facility claims that Saturday is the earliest they can release him. I am going to do my best to hold them to a Saturday discharge date.

Saturday is the earliest date, because then they can claim their full fee from various funding bodies, no doubt. If he leaves sooner, insurance company and various case monitors might get involved.

What does his supervising doctor say???

Joanne is right. Get his doctor involved. This is beyond unacceptable and verging on negligent. Raise the roof.

He has a doctor's office visit tomorrow at the practice to which the surgeon who performed the operation belongs. I fully intend to voice my concerns at that time.

I might consider getting the doctor to approve taking him directly home. Sounds nuts