Moved ALZ dad from a NU to a MC this past Wednesday. As reported, found out the NH had not being giving my dad his seizure med for a whole month due to a clerical error. Now in three days at Memory Care: Went 30 hours without fluids as they did not have the Thick It and everyone (MC, NH, hospice) was all pointing fingers at each other as to why the orders were not in place. It could be any, but I would think in the meanwhile, the MC would not let him go 30 hours without fluids. He is supposed to have nebulizer three times a day. First MC said they equipment had not come from hospice. Finally did last night. Today they said they had not received the nebulizer meds from pharmacy. I called pharmacy to ream them out only to be told they indeed delivered it three nights ago, at such and such a time, and signed for by a certain named nurse. So they confirmed they had it but could not find it. Finally they found it. They said his neb time was at eight to night. I said the heck with that, he is supposed to have it three times a day and he has not had it for three days, do it now. I called the hospice nurse who called the MC to raise hell (hospice is a godsend) and finally they did it. He was supposed to have a thickened ensure type drink with meals, and they always claimed it was coming from pharmacy that night. Yet the pharmancy told me today they made very clear to the MC that it would not be available until Monday. So I have been with my dad at meals all the time trying to assure he eats OK as in the past he would have a supplement drink to add if he didn't eat well. Its tough enough to watch my dad fade away the way it is . The reason you pay money to a facility is to have the peace of mind your LO is being taken care of, but I feel I am the only one making sure of this. Maybe this is just normal with all facilities, especially in the early days and you need to advocate. I was mad at the SNF we took him from, but looking back, they were probably not so bad. Am I just having bad luck or is this typical for places?
The MD associated with the MC hes now at visited him. The MD confided in me this MC has gone downhill since a big turnover in staff and they are in a bit over their head. I had done a lot of investigation and thought I had heard good things, but the news from the MD explained a lot of things. She supported our idea to move him to the SNF. She was a little apprehensive about saying this as the MC is sort of her client. Anyway, the MD stopped by dads heart med as she thought it was contributing to the lower blood pressure. I called the hospice nurse today to tell her this, and she said the facility was supposed to immediately notify her of any med changes, which they did not do. So I get the feeling she is aboiut to call the MC to read the riot act. Hard to not feel guilty that I have perhaps put my dad through a tough time we could have avoided. I guess in the end of the day, he has so much life left anyway and one choice or other wasn't going to change things a lot.
A little aside: I have mentioned on here how my mom is neurotic and makes things more difficult for me than my dad. Yesterday after meeting the MC MD, the MD brought me out in the hall. She said your moms anxiety level is through the roof. (I felt like saying duh, but she saw in on my face). She went on saying, it is off the charts and she rarely sees that, and my mom should be in an assisted living herself. (mainly, to make sure she takes her prescribed anxeity meds which she does not take) My mom blew a gasket when the MD mentioned that, but that sort of supports the MD point. This casued my mom to not like the MD, saying she didn't know anything. I said if that is the case, the social workers at the hospital, the social worker at the previous SNF, the speech pathologist at the previous SNF, the chaplain at the previous SNF, none of these people know anything either as they are ALL saying the same thing.
And there are no showers at my mom's nursing home, since everyone needs assistance they were removed in favour of tub rooms. Many of these people haven't been able to submerge themselves in warm water for years and it is a thought of as real luxury!
Most memory care facilities are not allowed to leave toiletries even bar soap in the room as the demented don't recognize things and some will eat or drink anything
No soap? Oy!
If you have the energy, I still recommend going to your state licensing site and viewing reports and complaints - you should be able to see in short order if your experience is indicative of a trend
Hope dad has a better day tomorrow and you get a day of rest
Yes, totally agree the HIPPA thing was an excuse. Otherwise, why not tell me last week that this was the issue? Because it wasn't the issue. The hospice nurse kind of challenged me today saying perhaps they were telling the truth. I kind of backed off because I am certainly capable of making mistakes in recall, but later I realized I had not made a mistake. We had submitted this form, and had we not, they should have told us Thursday or Friday rather than give other excuses.
Regarding hospice, yes, the SW at least was disgusted and seemed she didn't want to go forward with this place and in fact wanted to report them. The hospice nurse seemed to have an attitude that hes here now, lets see if it is possible to remedy this before moving somewhere else. I am guessing if the care conference doesn't go well on Wednesday with proper answer, she will suggest moving on.
Yes I do feel better now as I feel progress has been made and there is a certain plan of action. No, I will not go tomorrow. I have been going everyday out of fear that something may go wrong. I decided at some point I cannot keep this up, in part as it is stressful in and of itself. I try to feed my dad with a spoon and it just wrenches my heart to think I have to feed this one time vibrant and able man like a baby. I guess many here know how difficult that is. But I don't know if I can take it every day in a row. But whats more difficult, sadly, is my mom is neurotic and one hour with her wears me out, leave several hours in a row. Her own MD says she is in a room with her for ten minutes and the MD is worn out. And she will not take anxiety meds or go to therapy. So while I wish I could be there more for my very easy to be with dad, my mom ruins it.
I almost feel like I have to be there for him, but I think the message the place got today from me and hospice has sort of put the fear of God in them. I will be there Wednesday for care conference.
Presumably he was transferred by ambulance, with oxygen. That would be another indicator that he needed oxygen.
2. Notwithstanding both of those facts, an assessment should have been done which included vitals, including oxygen sat rate. Any one of these issues should have been enough to mandate the use of oxygen.
Strictly interpreting this, theoretically, no nurses or other aides could have asked him any questions in the initial assessment. And maybe they didn't, but they should have.
3. I say "phooey" to the HIPAA issue - it's just an excuse. Never once have I had my father in a SNF and signed a HIPAA acknowledgement before the assessment was done. That's not for any reason other than that as soon as the ambulance brought him in, the nurses and aides were "johnny on the spot", hooking up oxygen, taking vitals, etc.
Facilities follow the discharge instructions, and if they included oxygen, there's no excuse for hiding behind the HIPAA statute.
In my opinion, there is no excuse for not connecting the cannula to the concentrator. I believe this is negligence or incompetence.
4. I think your professional manner of presentation was effective, and hopefully will get some responses. If it's been said that a report will be made to the ombudsperson, hopefully the hospice staff will do that.
5. There's a very good valid, and legal reason for the hospice staff to report to the Ombudsman. If, or rather when, the oxygen and perhaps other issues result in negative consequences, it will be difficult to sort out the liability.
Hospice staff don't want to be involved in complaints of negligence, and I'm sure their company doesn't either. So they have valid reasons to ensure that acceptable care is given.
I'm wondering though if a good hospice would even want to continue with such a sloppy MC company.
5. You can also do some work on your own and find out where the HQ for this chain is, get the names of the execs and the medical management staff, and complain to them if you also have to complain to the Ombudsperson. The exec staff can make things happen, IF that is their desire. Maybe this chain is just sloppy.
Do you feel relieved now, or still anxious? I assume you'll be visiting your father tomorrow? See if things change. If they do, someone got to someone else and they sat up and took notice.
I hope you sleep better tonight, and as Scarlett O'Hara said, "tomorrow is another day", and a much better one for you, your mother and your father.
I'm hoping this works out. You done good!
I arrived at my dads room this morning and the hospice social worker and nurse were already there, though the nurse was in talking to the facility nurse. The hospice SW was sort of shaking her head, saying once again when she got there today the oxygen was not hooked up. She said last week when she came there was not chart on my dad, etc, seemed totally messed up.
I gave the SW a memo I prepared to discuss with the House Manager, where I attempted to diplomatically list the many issues while also acknowledging the good things. She read it an shook her head some more indicating it did not seem surprising given her initial impressions. The hospice nurse then came back and said the facility nurse said the reason certain things were not done was because we had not signed a HIPPA form to release information, so their outside doctor could not examine my dad and give orders . NO ONE told us this was the reason last week. Instead last week it was all kind of other excuses. Furthermore I was fairly sure we had indeed signed and returned the HIPPA form but since I am certainly not above making mistakes, I was not going to claim that was the for sure truth. But still, why a different story today? If this had been the reason they could have told us that last week in stead of the stories they did.
The hospice nurse she set up a care conference with the her, the hospice, SW, and the management of the facility for Wednesday but the house manager would like to see my mom and I today. So we went there and I gave her the memo of issues, and she asked if she could have time to review it and have corrective actions ready for our meeting on Wednesday . This did not seem unreasonable, but I did point out a couple of my more crucial concerns I wanted addressed prior to then. She then gave us the HIPPA form she said they needed filled out. Get this, once I saw it, I KNEW we had already filled that out and signed it and returned it. I thought we had but once I reviewed the form I knew we had. I would not forget that form. So once again I am guessing they lost it and it is totally consistent with all the other mess ups and misinformation to assume they lost it, and this was just the flavor of the day excuse. I reported that back to the hospice team.
The House Manage did have some good things to say . She had been on vacation last week and said had she not been these things would not have happened. That was good news bad news. Good news in that perhaps last week was not indicative of how it usually runs, but bad news in that do I have to worry when she is not there things will fall apart? She has a number two who she promoted who had been the lead care manager, but this person has no experience in admin, and while she is a good worker, she doesn't know how to organize and administrate. The House Manager briefly reviewed my memo, and said while there may be different reasons on the part of others for the errors, that is not the point. She said her facility and by extension her were directly responsible for the care of my father and therefore responsible for the errors and whoever caused them, they should have made sure they did not happen. She used the words the buck stops here and pounded on her desk. So maybe it is just words, but at least good words.
I mentioned the head nurse at the facility is an LPN which surprised folks here. I found out from the hospice nurse that there is an actual Director of Nursing but she is located at another facility within this regional chain. The LPN is more of the lead nurse at this facility . While the hospice nurse was an RN, she was not concerned about the lead nurse being an LPN as she was not the DON per se.
She didn't tell me directly as I am guessing she didn't want to promise anything, but she intimated that she would be having a come to Jesus talk with the DON prior to the care conference on Wednesday.
The hospice SW and the hospice nurse had somewhat different attitudes. The SW was in a shake her head mode wondering how a place could be so incompetent. She was wondering if my dad needed a SNF rather than a MC/AL but conceded even then, an MC/AL should not be so incompetent.
The hospice nurse was a bit more pragmatic. She suggested as others here have that there are often problems, especially in early days and rather than point fingers at each other as to where the fault like, we should work on communicating with each other to resolve the problem so hopefully my dad can stay there and mot be moved again. So I saw both points. Like the SW I saw what appeared to be a comedy of errors, and there is no hope, but also like the idea of not throwing in the towel yet until we have the care conference and the management has a chance to respond and report on how they will prevent these things in the future. I am still not happy that my dad went 30 hours without hydration, three days without nebulizer, or how many hours with oxygen, TWICE. You don't have to be an SNF to not make those mistakes. But will go to care conference on Wednesday and see what else the hospice team comes up with prior to then.
I also think there still are medical facilities and hospitals that try to provide the best care. While there may be incompetency, I don't think it's reached a "total" level yet.
But I certainly won't deny that there is some level of poor practice.
And let's not forget that the jobs are demanding, and ones that are very challenging. And they don't pay well.
He goes to in house beauty shop tomorrow for haircut and shave.
It’s pretty cute seeing him in there with the little blue hair ladies getting their perms. He doesn’t seem to mind.
Good luck to you Karsten. Play nice. No hitting and scratching........
One time I heard one Aide say "Lord, give me strength" and then I realized why. As she and other Staff members were working their way down the hall getting folks into bed, some of the patients had been in bed where now out and about in the pj's wandering the hallways. It was like herding cats.
This is messed up! Is this what I have to look forward to? I'm only 55 but dread my future.
Good luck Karsten!! I'm happy your dad has you!
This is how it is.
Good luck; I'll be anxious to read your next update.
Condolences again with losing your mother 💜
One of the first things I checked into about my dads AL was how long the various ad min folks, Director of this and that, had been there. In this particular place most had several years. And they were honest about turnover in the lower ranks.
Not a good sign if you have a different director or head of nursing every few weeks. That usually means the corporate office is treating all employees like crap.
I’ve spent time in care facilities as a tradesman, as a volunteer and got my parents in assisted living back in December. Mom just died leaving dad in the facility.
Not excusing bad care but when you think about the challenges of caring for one elderly, very ill, and demented person, multiply than by 50 or 100. It just an incredible amount to keep up with. All the different care needs, the meds, house keeping and food services.
Most places tend to be able to keep higher level employees. Below the LPN level is where it’s tough to find and keep folks. CENAs, housekeeping, food service, is a constant churn of employees. It’s hard work, for the worst pay. In the area Where my folks are you can make as much or more at Wendy’s . Wiping butts or making burgers......I’d be at Wendy’s....
My dads place is pretty nice, private pay only and these folks have just plain saved my ass many times over. However, just this am I sent a brief email with a list of things that need attention. Dave needs a shave, a haircut and his bathroom is filthy. I’ll see the ad min gals later today. I’m not mad but I’ll make sure they take note.
The first time I worked in a nursing home as a tradesman was several years ago. You couldn’t help noticing how difficult and unpleasant the low level care jobs were. But I’ve always been amazed at the kindness and compassion for the residents shown by these 99% of these workers. Some places are so understaffed I don’t how a CENA survives a week.
The ads min jobs are no picnic either. The director at my dads place can keep 4 balls in the air with one hand, direct the Russian army with the other and listen to me complain all at the same time.
Too many "stories" to share but I finally contacted the Ombudsman and she's taking it further! We've been told she's working on many cases at this AL but most people and their families arent willing to file a complaint because their scared of repercussions. A few days ago an RN from the state came to interview both of my parents but said that had nothing to do with the ombudsman case. That confused me but whatever. I asked her about Teepa Snow and wish that the staff could watch her videos...she had no idea what I was talking about!! Am I being too touchy here, wondering why she has never heard of Teepa Snow??
DON and Administrator of this AL that are newly hired is a joke. In the two years my parents have been in this assisted-living, they have had four different DONs and three different administrators! This assisted-living is owned by an individual but managed by a big company who manages 30+ other ones.
I believe it STARTS with the management (not the DONs or administrator).. I can't believe some of the brainless, uncaring, "professionals" they have hired. There are some good CNA's! No one there at this assisted-living can help us with the financial side of it either!
Talking with the ombudsman ( meaning numerous repeated phone calls and updates) has made us all feel better and hope to see a light at the end of this long tunnel.
Keep pushin on Karsten!