DH is in respite right now at a nursing home. As usual, I took all kinds of documentation for them--a comprehensive list of meds (and the meds, too) and a schedule of when they are taken, the DNR signed by his doctor, a medical history, etc. There was a problem with administering meds--skipping them or giving them at the wrong time--so we got a printout of the nursing home doctor's orders. Right at the top of the first page it said "FULL CODE". When I asked about the out-of-hospital DNR we gave them, they said they needed their own form. Nobody bothered to tell us that. They just ignored the one we gave them.

We finally found out that they were administering meds based on what was ordered when DH was there months ago--despite the updated list we took them, plus all the meds in the original pharmacy bottles with the doctor's instructions printed on them. DH is on lots of different drugs, and they change frequently, which is the reason for the detailed list I provided. Nobody cared about that, but just went by what was in the file.

DH has a very expensive inhaler ($425.00 each) that he only uses when he is having problems. Once it's opened, it expires in 30 days. I wrapped packing tape around the box it came in, and put a colored label on it saying not to open it unless he needs it. Sure enough, they opened it. Since DH doesn't need it right now, that's $425.00 down the drain.

At the family care conference today, the nurse in charge was very matter-of-fact about all of this. It wasn't a problem to them, it was just things that happened--they looked at the wrong information, or something was wrong in the computer, or they needed a different form. No hint of understanding that some of this could be life and death for my DH. Especially there was no hint that it might be their responsibility to make sure that these things didn't happen.

I think about all the nursing homes that don't want family members to visit for so many days or weeks after a loved one is admitted so the residents will "learn to rely on the staff". At one nursing home (not this one), when DH was too ill to go to the dining room, he just missed a meal. They had previously told me that they "encouraged" all their residents to go to the dining room. I guess starving them would be a pretty good incentive to try to get to the dining room. I may be paranoid, but sometimes I think the policy of no visitation is so they don't have interference from family members who are actually expecting their loved ones to be cared for.

At what point do you start kicking and screaming? Am I overreacting? What is a reasonable expectation for care in a nursing home?

If I were in your place, I would go straight to the top administrator, explain everything as you did in your post, and demand that your instructions be followed. If you are not satisfied with his/her response, you can take it to the Ombudsman - the nursing home third party overseer.

Since your dh is in for respite, and not permanent placement, you can look else where for the next time. But I would speak with the head nurse and administrator of whatever place you choose and make your concerns known right up front.

joang

I learned one must go over all meds prior to admittance even just for respite. I had the same issues, it appears third party companies keep up some medical records for entities and when you have more than one person things get complicated. and overlooked. I have had to go over with hospice nurse every respite to ensure only meds DH currently takes is on the list. otherwise you may wind up getting meds given months ago for various other concerns. never take it for granted they are on top of things. just my own opinion. and I agree with the others take your complaints to the top and get it in writing. having things documented leaves paper trails.

Ditto to what others have said. Scream loud and long. I'm an RN too, and found your summary chilling. Unfortunately, it wasn't much different from the kind of care DH got when he was in a NH for respite.

Thanks to all of you who agreed that I was not over-reacting. I'm so used to feeling half-hysterical all the time that it's hard to know sometimes.

This morning they tried to give DH the wrong meds. There were two oval pink tablets, instead of one gray and one white. When he declined to take them, saying they were the wrong ones, he got a lot of push-back. He finally went to the nurse's station to tell them about the problem. The lady then palmed the pills and said she didn't try to get him to take them--she just went into his room to wake him up to tell him they would be bringing his meds. They never do that--wake you up to tell you they are going to be bringing meds! DH has never been delusional, that he would make up a story like this. He does recognize his meds, and what they are for. At the last doctor's visit, the doctor asked him the whole list--named the drug and asked DH what it was for. He was right on every one! Of course, DH can't remember what he had for breakfast, but that's another story...

I can see this is going to be an ongoing adventure. I know a lot of you have had this same experience--or worse--with nursing homes. I just really, really fear the time when DH will not be able to defend himself in one of these places. Guess that's why he's still at home after all these years. I honestly feel like his ultimate cause of death will be misadventure in a nursing home. I'm still wondering what those two pink tablets were that they tried to give him.

My wife has now been in an ALF dementia unit for 14 months. For the past 7 months I have been meeting 1:1 with the executive director every 2 weeks. I gave up meeting with aides, nurses, and even the dementia unit director a long time ago. I set the agenda for my biweekly meetings with the E.D. and issues are now quickly resolved. So I agree with what others have said ... go straight to the top manager of the facility!