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Good news. Hubby's doctor met with us for an hour and fifteen minutes yesterday [Friday]. She carefully reviewed all of his medications as well as set up a time chart for when the medications are supposed to be administered. She answered all of our questions, plus set up a follow-up appointment for next week.
The pharmacy finally sent the antibiotics Friday night (that Hubby should have been receiving all week for his pneumonia). Hubby was fine yesterday but today was coughing and coughing so I hope that it was not too late to prevent a relapse.
I arrived back at his facility about 5 PM last night. I asked the aide if I should review everything with her, She said "No, just give it to me and I will put it on the managers desk and she will review it on Monday." I told her that there was important information about the timing of his medications that needed to be started right away and she again said that the manager would review it on Monday.
Still multiple other prescription errors. There were changes/additions made at the hospital on Monday that were not yet made by the pharmacy. Hopefully they will get straightened out early next week.
I was leaving just as the aide set out Hubby's dinner, a heap of vegetables, a heap of pasta and an ENTIRE, ENORMOUS, UNCUT ITALIAN SAUSAGE!!!! I said "Hubby can not eat that! He is on a full, liquid diet!" The aide said, "It's OK. The director told me that Hubby can 'eat regular food' again."
I politely responded, "No, he can not eat that. His doctors in the hospital put him on a full liquid diet and his primary care physician is continuing him on a full liquid diet. Even before he was on a liquid diet he was on a mechanical soft diet and couldn't eat food like that." I explained that she could puree that food for him or give him something else. She very grumpily removed his plate and gave him an applesauce for dinner.
I then left and called both the director and the house manager from a nearby parking lot (for the privacy). I left messages about how deeply concerned I was about the food mistake and how dangerous that would be if Hubby had attempted to eat that plate of food (especially that huge sausage). The house manager said that the aide was wrong and she would call her.
I was there today at dinner time. The aide (a different one) told me that she had been told that Hubby was on a liquid diet and asked if chicken noodle soup would be OK. I said that was fine if it was put in a blender and the noodles and chicken chunks were pureed (which she appeared to do).
I left an extra copy of the rules for a full liquid diet (that came with his hospital discharge paperwork) plus an extra copy of the medication and food schedule that the doctor prepared.
But, my confidence in that place has been decreasing very fast.
More good news, my sister and my nephew are coming to visit for a few days. Yippee!! They said that I should just plan to catch up on my sleep and they will cook and clean and go grocery shopping and do all those things that I did not have time to do recently. I am very close to my sister, and she only lives six hours away, but I have only seen her once in the past two and a half years as both of our husbands were so ill. Her husband, of 50 years, passed away late this summer.
Update, Monday, December 4, 2017
My sister and nephew arrived about 5:30 PM yesterday. The group home called me at 7:30 last night (Sunday) because Hubby was vomiting "white stuff" (I assume that was to distinguish it from when he was vomiting blood last week), was sweating and was having trouble breathing. I agreed that "Yes, they should call the ambulance".
By the time that he arrived at the hospital his only symptom was vomiting. His Lipase level was "off the chart", according to the ER doctor, at 1,971 (normal is 23 to 85, maybe as high as 160- at least according to the internet). This could indicate problems with his pancreas. However, usually there is severe stomach pain with pancreatitis, which Hubby does not have. His white blood cell count (indicating infection was also high). By this morning, his Lipase level had dropped to 998 -still extremely high but heading in the right direction.
Hubby is scheduled to have another gastric endoscopy later today (at 5 PM) with the GI doctor. This will tell if the problem is connected to the problems that put him in the hospital last week.
The discharge social worker has already been in contact with his current group home. They are willing to take him back when he is released from the hospital. The discharge social worker, as well as the Community Care nurse, both feel strongly that he will have much better follow-up care in a facility with one aide per two residents rather than in a skilled nursing facility for rehab with many, many residents per staff member. I expressed my concern about the confusion related to his feeding issues as well as the medication mix-ups. The discharge social worker said that it was very important for the Community Care nurse, as well as the "visiting nurse" work with the nurse and staff at the facility to make sure that there are not any more "miscommunications" and mix-ups. She pointed out that it is "not my job" (as the spouse) to verify medication, and the nurses should be doing that.
The discharge social worker also made a very good point. If the group home refuses to take him back because he is "too difficult" to care for, it is a huge Red Flag and it is likely that no other group homes will accept him as a resident. So, it is wonderful that they are welcoming him back.
The discharge social worker has already been in contact with his current group home. They are willing to take him back when he is released from the hospital. The discharge social worker, as well as the Community Care nurse, both feel strongly that he will have much better follow-up care in a facility with one aide per two residents rather than in a skilled nursing facility for rehab with many, many residents per staff member. I expressed my concern about the confusion related to his feeding issues as well as the medication mix-ups. The discharge social worker said that it was very important for the Community Care nurse, as well as the "visiting nurse" work with the nurse and staff at the facility to make sure that there are not any more "miscommunications" and mix-ups. She pointed out that it is "not my job" (as the spouse) to verify medication, and the nurses should be doing that.
The discharge social worker also made a very good point. If the group home refuses to take him back because he is "too difficult" to care for, it is a huge Red Flag and it is likely that no other group homes will accept him as a resident. So, it is wonderful that they are welcoming him back.
ARRGGG!!!!
Germaine, I wish your husband well but this info from the discharge social worker is all wrong and has been proven so two times by the group homes you husband was in. One aide per two residents only results in good if the one aide is competent and follows doctor's instructions which has not been the case. There is no supervision in such a small setting and when caught they say 'miscommunication'. And you have had to do 'their job' and not yours because they have not done their job.
In a larger facility there is one RN and (let's say) 5-6 CNAs on duty at any one time. If someone goofs up, someone else is there to catch it. And if all else an RN is there watching the CNAs and observing their efforts, checking medication, etc. and RESPONSIBLE.
And they are 'willing to take him back' after nearly killing him in one place and almost as bad in the second? Puleeze.
My belief is that everyone on this forum has the utmost sympathy and concern for you and your husband and sees where none of us know where life will take us. You have done admirably.
But I cannot be sympathetic here. IMO, it is time to kick rear end until fecal matter erupts or hire someone to do it for you. This treatment of your husband cannot stand. Get him in the proper facility where people are competent and responsible. IMO
as always, my best wishes and thoughts go to you. I realize you may not agree with me, but IMO this had to be said. as kindly as I could put it.
Germaine, I wish your husband well but this info from the discharge social worker is all wrong and has been proven so two times by the group homes you husband was in. One aide per two residents only results in good if the one aide is competent and follows doctor's instructions which has not been the case. There is no supervision in such a small setting and when caught they say 'miscommunication'. And you have had to do 'their job' and not yours because they have not done their job.
In a larger facility there is one RN and (let's say) 5-6 CNAs on duty at any one time. If someone goofs up, someone else is there to catch it. And if all else an RN is there watching the CNAs and observing their efforts, checking medication, etc. and RESPONSIBLE.
And they are 'willing to take him back' after nearly killing him in one place and almost as bad in the second? Puleeze.
My belief is that everyone on this forum has the utmost sympathy and concern for you and your husband and sees where none of us know where life will take us. You have done admirably.
But I cannot be sympathetic here. IMO, it is time to kick rear end until fecal matter erupts or hire someone to do it for you. This treatment of your husband cannot stand. Get him in the proper facility where people are competent and responsible. IMO
as always, my best wishes and thoughts go to you. I realize you may not agree with me, but IMO this had to be said. as kindly as I could put it.
Thank you for your honesty.
I am really torn. The last time Hubby was in rehab in a SNF was after his traumatic brain injury. It was an unusual situation as he was placed in the Memory Care wing of the facility. He (and the other residents of that wing) wore ankle bracelets that would set off an alarm and stop the elevator if they attempted to leave on the elevator, plus all of the doors to the stairs were alarmed (possibly even locked). The staffing was so bad that I spent eight to twelve hours each day there "supervising" Hubby. He was there about 25 days and I believe that I only missed one day (due to exhaustion). There is no way in heaven that I could manage "supervising" Hubby eight to twelve hours each and every day in rehab in a SNF at this point in time.
And, he would never qualify as a "regular patient" in a SNF. It is my understanding, that in Wisconsin, you normally need to either be completely bedridden or on various machines keeping you alive or both to qualify (at least if you are not private pay). So, it is a group home or community based residential facility, of some type, for Hubby (who is on Medicaid).
I am really torn. The last time Hubby was in rehab in a SNF was after his traumatic brain injury. It was an unusual situation as he was placed in the Memory Care wing of the facility. He (and the other residents of that wing) wore ankle bracelets that would set off an alarm and stop the elevator if they attempted to leave on the elevator, plus all of the doors to the stairs were alarmed (possibly even locked). The staffing was so bad that I spent eight to twelve hours each day there "supervising" Hubby. He was there about 25 days and I believe that I only missed one day (due to exhaustion). There is no way in heaven that I could manage "supervising" Hubby eight to twelve hours each and every day in rehab in a SNF at this point in time.
And, he would never qualify as a "regular patient" in a SNF. It is my understanding, that in Wisconsin, you normally need to either be completely bedridden or on various machines keeping you alive or both to qualify (at least if you are not private pay). So, it is a group home or community based residential facility, of some type, for Hubby (who is on Medicaid).
Germaine -
I recall the last time your husband was in an SNF. I agree, it's as much a crapshoot with those as it is the group homes.
1 RN supervising and several CNAs *sounds* great; but again, depends on how many other difficult patients there are and what is going on.
In my mother's case (she was discharged from hospital (Pneumonia) to an SNF to try to recover enough to come home) they missed the fact that her breathing/cough was worsening (I mentioned it for several days) and after a week she was transferred back to a hospital (by ambulance, at 1:30am) because she had a heart attack. At the hospital she was found to have a punctured lung. Ultimately, she passed about a week later at the hospital.
In her case, I managed what I could, but I *trusted* the SNF. I mentioned my concerns on multiple points, and ultimately they always had a reason why my concerns were invalid - until of course she went into cardiac arrest and they got to dump her back in the hospital.
The SNF was well regarded and is part of a large well-regarded retirement/SNF/system.
My prior experiences with SNFS (2 prior (3 separate admissions), before mom and dad moved in with me) were also a mixed bag.
The truth is that most of the care is left to the aides, who have little medical experience. The poor nurse on duty is overwhelmed and a doctor is only available on occasion (1x per week, perhaps). Resources are tight, and the institutions are *For profit* and therefore not going to increase staffing beyond legally mandated minimums.
Keep in mind, my parents were either Private Pay, or Medicare (not Medicaid) at these places; and still the care was mediocre to negligent (at best).
There may be some Diamonds out there, but the great majority are just MEH, and without significant oversight from family, I doubt any better than the group home.
All that being said, I honestly think a majority of workers at both types of facilities WANT to help people and provide superior care. I just don't think the system (such as it is) makes it a statistical reality.
Enough of my rant.
I'm sorry to hear of your husband's relapse. I hope the hospital (different hospital, or same incompetent one as before?) can figure out what's going on and he can truly begin on the road to recovery.
My neighbor's MIL had not even a "real" stroke at age 95 and got an SNF placement in Illinois, easily. My neighbor found the place and she had 120 days left on insurance so they agreed to take her THEN they did the Medicaid arrangements to switch her to Medicaid in conjunction with my neighbor's help.
There's actually not a single thing wrong with her. She's ACTIVE and acts "normal" compared to what you'd think.
Here in FL., IME, yeah, they won't send you to a decent rehab if you're not a likely candidate for improvement but it's the doctors who advocate for the patient.
My neighbor has a sister in that position, too. Always 911-ing into the hospital then getting discharged to a "rehab". Then running out the insurance and coming home. No medicaid yet. And she's not even sick, either. She just gets dehydrated, doesn't take her meds and falls down.
It's terrible that a man in DH's horrible health status can't find a place who can simply FOLLOW DIRECTIONS and use common sense. His brain is such that he cannot articulate anything properly. With dementia you might think you have a back ache but you're constipated.
Maybe start searching yourself/your sons for one of the faith based non profits? You never know....
I wouldn't be surprised if the official "system" has selectivity/favoritism in what they tell you or who they send to different places.
You'd think at this point, giving him the tube food would be idiot proof. But I'm SURE some idiot is still going to plop down some sausage. Since they did it already. Not to mention the lousy attitude they gave you.
Hubby was released from the hospital late yesterday afternoon (Tuesday night). It went OK. I'll post back, later today, after I have gathered my thoughts.
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Update, Monday, December 4, 2017
ENTIRE, ENORMOUS, UNCUT ITALIAN SAUSAGE!!!! 
