As I posted before, DH had been more alert in the last month or so; he went from barely speaking to speaking nonstop. At first he seemed to be focussing more and to be more "with it"; then he started to get loud and agitated; then his talking seemed to become more of a sing-songy rambling, and except for an occasional clear sentence, would be incoherent. But still, he was more alert. All of that seemed to start when the NH doc started weening him off meds.
Now, they've got him back up on the clonazepam, 3 times a day in addition to 75 mg of Trazadone at night. When I went to vist this past weekend, I almost couldn't wake him up. It took me and an aide to rouse him and he was very groggy.
I expressed concern that he is overmedicated. I didn't even realize that he was getting that much Trazadone and now the clonazepam 3 times a day. Yes, he's calmer, less agitated and shaky, but also more "zombyish". The aide I spoke with on Sat. (she's my favorite, very attentive), mentioned something about DH jerking his leg and a resident falling over him. I don't know if this is one reason for increasing meds or not. But it bothers me. When I mentioned my concerns about the grogginess last night to the nurse, I got "We haven't seen that". It just seemed so dismissive to me. I don't care if they've seen it or not, I have and his brother has.
This NH has a very good reputation and when I had him admitted last Nov., it seemed like the best place for him, but now I'm not so sure. It's very crowded. I'm sick of going to see DH and barely being able to wiggle in to sit next to him. He's usually sandwiched in in a chair next to two other people in the same spot in the day room. Unless I have them put him in a wheelchair and take him to his room, there's not much privacy or space.
I wonder, am I being too picky? The kids and I moved in July and I'd like DH to be closer to where we live so I don't have to drive 45 min. from home just to see him. Still, I wouldn't mind the drive if I felt sure that this was the best place for him, which I don't.
Anyways, I'm going on Sat. to check out a NH closer to where we live. It doesn't have an AD unit, but has other AD patients. (I don't think having DH in an AD unit is so important since he's not ambulatory and isn't going to wander off. The important thing is that they have experience dealing with dementia patients.)
I do worry that moving him could cause him to become more disoriented and set him back. But it's not as if he's very attuned to his surroundings, or has a really close relationship to the staff or the other patients, at least from what I can tell.
Do any of you have experience changing your LO's nursing home? Was it a smooth transition and have you had any regrets? I could use some input on this.
Kelly, you are right to be concerned. Some places medicate (or over medicate) to make it easier for them. This doesn't necessarily mean that it is right for the patient. They should be talking to you whenever there is a med change and telling you why they are changing it. They should also be addressing your questions and concerns. A good place will do those things.
I've moved my husband twice since first placing him. He adjusted to each change very well. I have no regrets about the place he currently is at other than the fact that it is a half hour away so it is a real effort to try and see him most every day. As I have a limited amount of time available to me to visit, the drive cuts into the length of time I can visit. I've been told by the staff that it isn't the length of time that a visit is that is important it is frequency and consistency of visits.
If your husband has adjusted fine in the past, he will probably do fine if you move him. If he is closer to you, it will may mean that you can visit him more often and be more available if there is a problem.
I think you should be researching places closer. You might find one that is a much better fit for you and him than where he is now.
Thanks therrja. I got a call from the Nurse Practictioner yesterday. She explained that before the med increase DH was in constant motion, moving his arms and legs constantly, jerking, etc. She said that since the movement has decreased, he has put on a few pounds, which I know he desperately needs. So I think having the meds are a good thing right now. But we'll have to work to get the dose right. She said that it takes some time to adjust, so he should be less groggy, more alert as he adjusts to it.
I realized in a way that I wanted him completely alert as much for me as for him. It is better for him not to be in constant motion, even if it means that he's not as alert as I want him to be.
That said, I'm still going to tour the NH nearer our home on Sat. I would like to be able to check in on DH more regularly. As it is now, I'm lucky if I can see him twice a week. That doesn't seem like enough to me.
It is always a tough call on the what is better for him and what do I give up for that question. I try and keep in mind that his comfort is more important to me and I also keep repeating that thought to the aids and nurses where he is. In addition to that as the aids are taking care of him, if something makes it easier for them and doesn't affect him too much, I am willing to try it or make an adjustment.
I've watched the zombie from medication look and ended up crying every time I walked out. If the disease makes him that way, that is okay but I prefer a better balance on the meds.
Keep asking questions and watching him, you know him best so you will be able to tell if the meds continue to be too much and they should back it down a bit or if things are okay. Stand your ground and it will work out.
I'm listening and learning. You are in my prayers, I'm sure you will make the right decision. We caregivers learn so much about how our spouses react to meds and sometimes it is difficult to say the least, to get the "professionals" to listen.
Well, I checked in on DH this past Sat. I took my almost 4 year old son with me, as I had no daycare options. Usually DH responds to him, seems to recognize him, and kind of "lights up" when our little one walks up to him. But Sat., he was a total zombie. I could barely wake him up again, and he seemed to not even react to our son. It was so bad that the aide had to give up on trying to feed him. He could barely swallow and kept coughing when I tried to give him soda, like I usually do. Despite being in a "zombie" state, he still started crying at one point. It was heartbreaking.
The nurse tried to suggest that it was progression of the disease. Needless to say, I kind of went into b**tch mode. I insisted they cut out the morning dose of the clonazepam. They called the Dr. on call (his usual Dr. was on vacation) and she authorized cutting out the morning dose. It was supposed to be up to the discretion of the staff, I guess, the order was that if he was too sleepy, reduce the dose. But apparently, they didn't notice or didn't find anything wrong with his sleeping all day and being unresponsive. I don't know. Anyways, when I went to see him yesterday, again with our little one, he did respond and even put his arms out to me, seemed to recognize that I was there. They had cut out the past 3 doses. Yes, he was raising his hands up more, but he wasn't shaky or jerky with his movements. He was still crying, though.
I was off work yesterday to stay home with our son. I took the opportunity to tour the NH near our new home. It was an older facility, but it seemed clean. There were no private rooms, though, and that's a biggie for me. I don't want DH to have to share a room. The director suggested I contact their other facility, which is in the town I work in (still 50 min. from where we live); it's newer, he said and has younger people, more AD patients. I'll think about it.
Anyways, I'm going to do my best to check in more often and keep track of the meds situation. I don't see any reason why he should be on that much clonazepam (or is it clonipin? I get them mixed up), when he's also getting Trazadone at night. I hope that they can increase the anti-depressant too to help with the crying.
I'll keep you posted. Thanks for the advice and caring words.
Kelly, I talked with my husband's doctor and the facility when I placed him about private versus shared room. They all said that sharing a room would not make a difference to my husband. The facility told me that if it became a problem, I could put him in a private room. It did not bother him at all to share a room. In all three places he has been he has shared a room and changed roommates several times. It has never caused a problem with him. I was surprised a bit at this as I thought he might raise a fuss. In some ways I think he likes having someone else around.