Three weeks ago my DH had another aggressive incident at his Adult Daycare and they could no longer keep him. I admitted DH to hospital for observation and med management. They discharged him after 2 weeks and from there he went to a nursing home. In 3 weeks time he's lost his ability to walk without falling, chew and swallow his food,and hold his head up without drooling. Because of the incident at the daycare no one else was willing to take him and I'd already tried in home care and it did not work either. Since I am still employed full time, I felt I had no other option but now I am second guessing my decision. I realize he is on strong meds and the behaviors are evident in many patients but it seems like he disintegrated overnight. I feel very guilty and I just want to go get him out of there! If I hadn't place him in the NH would he still have displayed these behaviors so rapidly? Can any one else comment on the changes in their LO after entering NH? I am considering taking family medical leave and bringing him home to take off strong meds and see how he responds. But even if he does well, I will still have the initial problem of care for DH when I return to work. There is no way to adequately explain the heartache, sadness and helplessness one feels as they watch their LO disintegrate before their very eyes. I am hanging on by a thread as I continue to trust God to lead me in the right direction BUT THIS IS SOOOOOOO HARD! Lord hear my prayers. . . .
Patt--I think it would help us to know more about your husband. What stage is he in? What medication adjustments were made in the hospital? Has the nursing home changed the medications again since he got there?
its my own belief that when they are interned for aggressive behavour the meds they administer to maintain them on is what causes the demise and all the unwanted side effects. these are very powerful medications and not every patient responds to them well. i know how hard it would be to work and worry about care for spouse. just my opinion but if it were me i'd take the leave and get him off the meds just enough to function without aggression and find a place that better suits his needs. with the right medications sometimes inhome help is a possibilty later on. divvi
Just got a call from the NH. They're sending him back to the hospital because he had a violent outburst, fighting with CNA's and hitting other patients. He was taken to emergency room so once again I need to leave work. Hopefully this time they' can find the right medications. If not, Divvi might be right and I just take the time off work for now. Hard situation because I'm an elementary school teacher but i have great colleagues so I know kids will be in good hands. I just want some answers and solutions, unfortunately for all of us, they don't come easy. The meds he was on were seroquel, depakote, klonopin, lexipro,and ativan given directly by injection when highly agitated. Trust in the Lord with all your heart and don't depend on your own understanding- gotta go!!!!!!!
This does not sound like a situation you can manage at home. It sounds like one that they are having great difficulty managing in a medical facility. There are many on this board who have kept their calm sweet spouses home for the entire course of the disease because the disease did not attack the portions of their brains that lead to violent behavior. There are many others on the board who are not so fortunate and have had to place their spouses for the same reason you had. You, your home health workers, the NH workers and patients all have to be safe.
I would insist they keep him in the hospital and work with the psychiatrists there to find the best combination of medications to bring his behavior to an acceptable level while trying to maintain as much function for him as possible. It is a very difficult balancing act and you need to find a doctor willing to work at with out over medicating.
This is not something any of us can manage at home, it is not a safe situation and we all need to vow to not let the disease take two people with it.
My husband had a hard time at the Day Care. He is young (68( and didn't want to sit still all the time. Also, I think there was just too much going on and he got aggressive towards some of the staff if they pushed him to do something he didn't want to do. I also placed him in a ALF for 4 weeks and he had a very steep decline. He was, of course upset and agitated being there, and they put him on 7.5 mg Zyprexa, took him off the Aricept, and also Ativan as needed. He was sleeping al the time, confused, couldn't speak coherently, got incontinent, started shuffling gait, got stiff and couldn't move as well, couldn't dress and hard time using his utensils while eating. He still got agitated and upset at certain staff people if they tried to help him change his depends, etc. Sometimes he'd get into a fight with a resident. One never knows who starts these and sometimes residents attacked him. So, the Zyprexa only made him really groggy, but he still would react to certain things. I got him out. He is back on Aricept, off the Zyprexa. He is still incontinent, yet goes to the bathroom independently, also. He speaks normally, reads everything he sees out loud, gets dressed, we shower together, no problem. We go out to dinner, he now walks again almost 3 miles with me, and in the mornings with a caregiver. I have someone come in every morning for 4 hours. He did get agitated at the caregivers at times, especially now that he is more alert. So we have to change our approach, more low key and have him do things more independently, not push things he doesn't want to do. That works better. Of course, he is confused, he likes to shadow me. I am also looking into more natural aproaches to dealing with anxiety.
I also read an interesting article about staff using"Eldertalk" (talking to a person as if he is a child). The study showed that residents got so much more agitated when getting help when people talked to them like that. The least agitated group of residents were those when staff talked to them in a normal adult way.
I think that ALF and Nursing Homes tend to get very noisy. So much going on and it can be overwhelming for a person who is sensitive to sound and visual stimulation. Perhaps a smaller place could work better, or a person who is willing to work with you and stay at home with him.
Patt, I had a similar experience as you (including aggression, emergency room visits and hospital stay for aggression). When he was at the hospital in the psych ward, they way overmedicated him to handle the aggression. He went from walking, talking, feeding himself to a wheelchair, unable to feed himself. With the help of the Hospital social worker I was able to place him in a terrific facility where they gradually backed off the meds to what was needed. He started walking again, talking and was able to feed himself - it was a wonderful time for us.
I also work fulltime. I did have in-home help for a while but he just got to be too much to handle at home (for both the aid and myself) so I had to place him.
The key is finding the right place for them with a philosophy you agree with. Eldertalk actually works with some of them but others will look at the aids that talk to them that way and say that they are an adult. A good place will treat each resident as an individual. Where my husband is they philosophy is that as long as they are not hurting others or in danger themselves, they can do pretty much whatever they want. They have lots of activities (muscians, dogs coming in, dancing and other things). My husband is now in a wheel chair. I had noticed that my tan (which really isn't all that noticable) was much darker than my husbands one day and mentioned it to the aids. They do take the residents outside as often as they can (every other day if not more) and walk/roll them around. He tans very easily and a couple of week later, his tan was darker than mine.....
My husband went to the hospital because he got past me (was physical and threatened to go out a window when a door was not available). They got him calmed down in the Emergency Room and never sent him to the psych ward. They were able to deal with him in a regular medical ward and adjust medications there. My point being that this was a 3 day hospitalization and not one that lasted a week or more.
He was placed in the nursing home right after that and they lowered the amount of medication they gave him quite a bit. The result is that is is less compliant, and vastly more depressed. He hasn't smiled in weeks according to one of the senior aides. And I haven't seen him smile either.
He has gone downhill quite fast. Still walking, in fact walking better because of therapy, but outside of that things are bad. He is sleeping a lot, and losing weight steadily. He is still a runner so he is kept on the floor where they know they won't lose him.
So the question is would he have gone downhill at home. My answer is yes. He was gong downhill at home so fast that he went from "no reason to place him" to "I can't safely keep him home" in less than 3 weeks before he ever went to the hospital. The hospital didn't do it. The nursing home actually has him walking better and at less of a fall risk then he was just before the ambulance came to pick him up at home.
Maybe the nursing home does it. Maybe they don't. Some of the time, at least, you place them because you can't safely keep them at home, and then it looks even worse a few weeks later. But that doesn't mean the nursing home "did it!"
Every time I read where spouses are over medicated at Nursing Homes or ALF, I feel so lucky I found the ALF I placed my husband in. The staff really doesn't like to drug the residents. Since coming back from the hospital for behavior problems, my husband is on less medication....finally found the right combination, that ended up being less. He still is aggressive sometimes when being changed...but the way the staff looks at it, they were told they may be hit at times when they were hired. This ALF has a separate memory unit. Now, if he were to strike another resident, he would need to have his medication adjusted again, thankfully, he hasn't done that. He also is the youngest resident at 59 years old, other residents are 20-30 years older.
This is hard and a very personal choice. I can not advise you on what you should do because only you know how violent your DH is and if you can handle him at home by yourself. Home aids will not be abused any quicker than nursing home staff will. I found the nursing home staff better able to handle Lynn than any of his aides ever were. I think you need to ask yourself why you felt you needed to place him in the first place? Was it "just" for aggression? Have any of those reasons changed? Will you take him home, only to have to place him again?
Placing Lynn was the single hardest thing I have ever done. They did increase his medications, A LOT! But I would have had to do it as well if he had stayed home. He was not safe at home, period. I could not be on watch 24/7, and that is what he needed. Lynn did decline at first, like many patients do, like any of us would. (unless they are so far gone they wouldn't notice the change.) But under many doctors care, his medicine was monitored and adjusted constantly. They do NOT like to medicate there, in fact I had to sign papers stating I knew the risks. He was never over medicated like some of you describe. He was given just enough to make his transition easier on HIM..not the staff. I am very grateful to all of them for trying to make his adjustment period as calm and easy for him as they could.
I told myself I would give it the 3 month trial period everyone suggested was the average for someone to adjust. And for the most part, he did. Those were very hard times for me.... every single day it was all I could do to not scoop him up and take him home. Even now, I often feel the same way... but I keep him there because as much as I want to, I can not give him the care he needs or deserves. If there was any way I could have him home, I would, in a heartbeat. But now it would be so selfish on my part. He is happy there, content and above all, safe.
Perhaps your DH will need more medication to begin with, for his transition period, but I am sure they will cut it back slowly once he starts to adjust. Lynn was never on so strong a dose to decline as your DH has, his adjustment was more to calm him than sedate him..... It is so hard, my heart goes out to you. Best of luck in whatever you decide ((hugs))
DH not eating. Losing weight rapidly. Can't go on like this for long. Meeting with docs today, I think they're going to suggest a feeding tube. Don't know how that will work exactly. Family in great distress. I pray for wisdom- big decisions must be made.
You know without us saying...lots of prayers will be going your way for you and your family. Without a doubt God will guide you in making the right decisions.
So here's my choices: send DH to NH with feeding tube; send to NH without feeding tube; with help of family and hospice, and no feeding tube, make DH as comfortable as possible and spend last days together at home. Has any one had experience with feeding tubes they can share? I really want to make a loving and informed decision.
Sorry, I don't have any experience with feeding tubes. When my husband was in the psych ward, they had him so medicated that he did not eat much and slept most of the time. When the meds were backed off, he started eating again. He lost almost 20 pounds while in there.
The meds your husband are on and the fact that they are given to him with a needle say very strong drugs with lots of side affects to me. Before commiting to a feeding tube, ask lots of questions about the meds and would any of them be causing the not eating versus the disease.
He was roaming around and causing trouble such a short time ago, while he may be dropping that quickly, it is not as likely a scenario as other options.
I came very close to putting in a feeding tube. Lynn wasn't eating but he was NOT in "end stage" he wasn't eating because the adjustment was hard for him. Perhaps that was the one thing he felt he still had any control over? You can read about all we went through in the thread -How Low Can You Go/Weight Loss in the AD patient. Many here advised against the feeding tube, and if he was in end stage I would be too. But I knew Lynn, and the doctors assured me he was not dying, so I did whatever I had to do to get some food into him. I liken it to a mother who has to make sure her child eats, you wouldn't let a child just starve to death! And I couldn't let Lynn either.
I don't know what stage your DH is in, or what is causing him not to eat....and only you can know him and the situation well enough to make any type of choice. Our miracle was a drug called Megace, it is an appetite stimulant for wasting diseases. I researched and researched and asked his doctors to put him on it, they agreed it could help and was worth a shot. And it was!!! He went from 90 pounds to 134!!! He eats very well now. I have had an extra wonderful year with Lynn because I followed my heart..... that is all we can really do. My heart goes out to you, it is extremely difficult to go through. Please keep us posted and know we are here for you in whatever you decide ♥♥♥
I should have mentioned he is now off the megace. It was part of his adjustment, his transition period. Once he was eating on his own and wanting to eat the medicine was decreased. Now he can't feed himself, but he loves his food! So there is no need for the megace.
Patt, hard choices; I wish you strength. Nikki's experience is an eye-opener; my first reaction would have been to let him go calmly. I have often heard that many AD patients die when they stop eating and that it is a calm and painless death. My feeling now is that I would prefer that to having my dh survive into end stage. However, it's easy for me to talk, since I'm not there yet. You are in the hard place and must follow your own heart.
We have had a wonderful blessing occur. After the initial meeting with docs regarding feeding tube, we asked for him to taken off the real strong meds and back off some of the others to see how he would respond. Three days later he's walking, eating soft foods and more alert. One week later be can walk without help, eyes open and alert, some "mumbling talk" and eating 50-75% of his soft food meals and drinking liquids. He is more like himself before we began the journey to the hospital and NH and then rapid decline. With this change, the feeding tube is no longer in the picture and I'm hoping he can be placed in a different NH shortly. If we have to wait for a bed, it's my understanding I have a window of about 30 days where I can still place him in NH without having to go back to the hospital for re-evaluation. So that is the direction we're heading in- If you want God to direct your steps you have to be willing to move.
"If you want God to direct your steps you have to be willing to move." Good advice, Patt, and I'm glad you're seeing changes with your decisions. Today I canceled appointments for an EEG and SPECt for my hb after talking with a neurology nurse practitioner and caregivers in my support group. When my hb heard me saying his name on the phone, he asked me why his name was talked about. I told him about the SPECt I was canceling. He said, "Good; no way Jose do I want that." He had a recent MRI which showed evidence of more TIAs, which are evidenced in his cognition skills, too. We'll stick w/family doc and his specialist nurse practitioner (neurology).
After my DH's significant improvement, I decided to bring him home. He has done very well for 4 days now. Very well meaning- eating, drinking, walking and no agitation or aggression. We are still considering SNH but definitely not the same one he was in for a week. We may even be able to look at adult daycare again if his improvement remains stable. Besides blood pressure and cholesteral meds, only other meds are seroquel and depakote. He's sleeping 7-8 hrs without waking. First good sleep I've had in 2 yrs! Of course, we still have wet clothes and sheets to deal with in the morning but hey- I can handle that better at 6 or 7 am instead of 2 or 3 am! Still uncertain about the future don't quite know what al this means but I feel like I've been given a gift- more time. And like Nikki, I folloiwed my heart and it led us here so I'm grateful. Taking it just one day at a time and enjoying it for what it is and leaving tomorrow to tomorrow. "Trust in thhe Lord with all your heart and lean not unto your understanding. Remember Him in all you do and He shall direct thy paths." Proverbs 3:5-6