I am having some problems. This is my first post here. My person was diagnosed with early onset ALZ with behaviors in 07. We'd been together 23 years. When we met, his house had solitude in nature, mine was in a community where most of his work & our friends were, so we enjoyed both. At the time of diagnosis, I was in the process of selling my business and we were finishing his place and planning to retire there. It became apparent all his assets would be needed for care, and I did everything to keep him home and independent, his choice, for almost 3 years. We'd had 2 very stressful years prior trying to find out what was wrong. Then a woman he had dated for 4 months 42 years before made contact without my knowledge. I later found out she was crazy and criminal. She stole credit cards, took him to the bank, and made him a book of a trip they took together in 1969 & in his confusion he thought he was with her. He had a complete psycotic break when his brother had him hospitialized after he picked up an axe when he tried to get her off the property (she visited without my knowledge 4 different days). She was trying to take him out of state to "marry him". The hospital would only release him to full time care. By now, he was angry all the time with me - I was the one that stopped him using a motorcycle, eventually a car, a woodstove, and stove. I also realized I couldn't give up my income from my business so was commuting 45 min. They psych hospital was 3 hrs round trip, and the only nursing home that would take him was 40 miles away. No one wanted him with this MO. I was finally able to convince a nursing home in my town to take him, and he has resided there for two years. He was stable on Aricept and Namenda and Ativan took care of his agitation. He was doing fine, but on July 31, I was called into a meeting at the nursing home and told he was doing behavior that endangered other residents health and I would either need to agree to Risperdyl and Depakote or would need to find other placement. The behavior involved pulling a fire alarm and some incidents with peeing in inappropriate places and poop.I couldn't agree to Risperdyl as he had bad effects when it was given prematurely. So I said ok to the Depakote. On Depakote he started hitting people. He lost speech, then was falling down and progressed suddenly and became incontinent. Then they decided he had a UTI and weaned him off the Depakote adding another drug, a tri-cyclic to do so. There were 2 days he was delerius. 4 courses of antibiotic later, he was back to himself but still causing some problems there and incontinent. I was again told by the nursing home that he was a threat to others and I needed to consult with their geriatric specialist & I was to agree with whatever she said or we would have to find other placement. By then the hitting had stopped, and he was still on the antibiotic. This Dr. put him back on the Depakote and added Seroquel and took him off the Ativan that had always controlled his agitation. Before they could even see if that worked they sent me a letter saying we were being evicted in 30 days due to his behavior endangering people. I got an ombudsman and the Dr. did a bladder scan to rule out prostate infection. The scan showed a tumor in the prostrate, and before we could appeal the eviction for a hearing, they decided to not evict us! But he started hitting people and that is escalating agan. I think the he is having side effects to the Depakote, it surely isn't doing any good, and they aren't hearing me. I can't see why they took him off the one thing that took care of his agitation in the past, the Ativan. Now he is getting Serequel, Depakote, Trazadone and his Namenda 20mg, and Aricept 23mg. Yesterday they said if he hurts someone they will call the police and give him a haldol shot! That would certainly make him psycotic! Everything was fine before the UTI and them giving him Depakote - he was stable, with the exception of behaviors probably due to whatever was going on in his urinary tract. My worse fear is that he'll be hospitalized and we will be without a placement (he can't share a room and most ALZ units locally have shared rooms or waiting lists or many miles away with low ratings and a move would be very hard on him). I am trying to work, take care of home, take care of him, and stress is causing me to have panic attacks after two and a half months of this, hard to sleep, eat and racing heart. I am starting to think getting him to a geriatric psych unit to rebalance his drugs is the only solution, as what they are doing is not helping and making things worse. If we could get him stable we could get the testing necessary to see if we what we are dealing with - this Dr. thinks he has cancer now too. If they won't hold his bed, placement could be anywhere. Any input anyone can give me would be helpful.
Welcome to my website. Unfortunately, what you are describing is not uncommon. I have heard similar stories from other members. I have not had direct experience with your situation, but many of our members have, and can hopefully help you.
It seems to me that at this point, you may have to go the geripsych route. They can adjust his meds, watch for side effects, and stabilize him.
I'm not an expert in this particular scenario, but there are others who are, and they will be along to help you. It seems to me that your solution of a geriatric psych unit to rebalance his drugs is a good one. Best of luck.
Mariposa, my DH just went through a geri-psych stay at a hospital due to aggressive behaviors at his ALF. While I was terrified at the prospect, his stay at the hospital was a positive experience and he was not traumatized, as I'd feared. The biggest problem we had was finding an available bed in a geri-psych unit, as there are few beds and they are always full. I would recommend that you only agree to have him transferred to a geri-psych unit, not just to a hospital ER, to wait for an available bed.
As a 'civilian' in this whole ALZ journey, I now realize that I cannot know what meds will work for him and which ones won't. Patients and circumstances change and require different interventions. I just had to put my trust in the doctors and staff to make the proper diagnosis and all, happily, has turned out ok.
From what I've read on this site, the hospital, once his behaviors and meds are adjusted appropriately, cannot just release him without a suitable destination. The hospital's social worker will work with you to assure he is placed per your wishes. The social worker I worked with was very helpful and supportive to me.
mariposa I agree with the others that a geripsyche stay may be the only way to get him sorted out on meds. we know for sure that some of our folks cant tolerate many of these potent meds. and depending on the type of dementia diagnosed most definitely can make their behavior worse. there are others who have more input about the type stays and threads that discuss it in depth if you search geri psyche in the seach engine. without him compliant and easier to manage you will run into this all thru his journey.
Thank you for input! I got the first day off in 2 months yesterday and finally got sleep I needed as he settled down. He was never hitting anyone until they put him on the Depakote, and I can't understand why they would do that again as the same thing happened again. And he loses speech on it, and I think the frustration from being unable to communicate fuels the agitation. They are telling me I have to do whatever their doctor says, not necessarily a doctor I would choose. I agreed to the Seroquel as if I can't get his behavior under control, I can't even get him the testing he needs to discover what type of cancer we are dealing with, if it is cancer. They upped that Friday, and he did calm down Sat. The head nurse agrees with me that she sees no improvement with the Depakote, just worsening behavior, so hopefully she'll be able to convince the Dr. on Tues. He was stable prior to all this.
No, never posted on any other site. I will look for this on other threads. Thanks for guidance and others good experiences with the route I am thinking is needed. He really feels at home where we are now, and his friends can visit and its close to where I can help him.
Well we were evicted from the nursing home due to his behavior, and he is in a geri-psych hospital since Sunday. I could have chosen one closer, but this one had a better reputation and highly recommended Dr. so even though I can't visit, I stayed 2 days to see he was settled in & the move there was not traumatic to him, though he is having some difficulty now being there, I know this was the best decision, as nowhere else would accept him unless he is stable. And frankly from three months of repeated crisis, I was needing a break as my own stress is almost over the edge. Thank you for the supportive suggestions.
We are in the 2nd nursing home and 2nd geri-psych stay in 27 days. He ended up staying at the geri-psych unit for 18 days. It was supposed to be 14, but he wasn't stable. Many of the nursing homes close that their social worker suggested said they wouldn't accept him due to his behavior, after reading the nursing notes. I finally thought I'd found the perfect one - had the same Dr. as the geri-psych unit, also had a behavior bed open as well as an ALZ bed, and 5 miles from me. I moved him, and the first night there, they said he hit them while trying to put an ankle bracelet with a chip on him. Turns out the aid they got to help also worked at the nursing home he was ejected from and he carried tales to the new place. I'd been with him for 2 days to help with the transition, and went home for an hour to feed myself and cat. He had only been there about 7 hours. They were calling a different geri-psych hospital, one I don't agree on to take him. They hadn't gotten his meds, (missed 2 doses) and didn't have a PRN, and were forcing him, which put him over the edge. They kept him the night and next day said they'd give him a chance and if he didn't make it there they would try to rearrange & put him in the behavior unit. The next day, in the morning he had a meltdown, wouldn't take meds, they said he hit nurse, and another resident, and were sending him back to hospital. Before I could get there to help his transition be non traumatic, they gave him a shots of haldol, tied him down & took him yelling & traumatized, which the people in the hospital said was totally unnecessary. By the time I got to the hospital an hour away, he was a wreak. At least he knows the people there, and they are kind. The Dr. said they didn't give him a chance to adjust. He recently lost more speech, and goes up and taps at people, who need to find out what he needs. It is not hard hitting, but he's been labeled "violent". He also lost the sense of people's personal space, so gets too close for their comfort. He is 66, strong, young and mobile. The stress of this is putting me over the edge. I run a business, can't get my work done, and can't sleep. Crisis over his behavior started at the other nursing home July 31. Now I am having racing heart all the time. I think home #2 just dumped him, as they are saying they'll take him back if they like the nursing notes, if they assess him and "if they have a bed" in their behavior unit, which they said they didn't have when we got there, and was one of the reasons I chose that one. Now I have to visit more homes, and if I can't find one suitable, they can release him anywhere when they deem his stay is up. It could be a lousy one, way to far away for me to help him often. This is the time of year I need to be working lots of overtime, and my life is going over the edge, as is my own heath. I haven't been able to get myself to a Dr. to deal with the panic attacks I am having. I am afraid I am going to get him into another place and the same thing will happen. He has been in nursing home care for 3 years. I still have things in my car from the first move that didn't fit in his new shared room, my back went out, and I feel like I'm reaching my limit on stress. Almost a month later, we are back at square one.
mariposa so sorry to hear you are having so much to deal with again. getting these meds ironed out is cronic worry. on us and them. I know for sure they tried Haldol with mine and he went over the edge too. some of these super meds just do not resonate with our AD folks. but the drs use what they have for other types of psychosis because nobody has general knowledge on how or what works with specific dementias. a tragedy for our spouses who are the guinea pigs. but there isn't a lot we can do . they cant be violent or hurt someone else.many here have been where you are with several stays to get meds worked out. marilynmd, Emily, and more have posted their anxiousness over how they had to deal. I hope you find a dr that can help your DH and you get to where you need to be. we also find once a patient has that label of violent its even more difficult. I also have had a few panic issues and so those of us who have experienced them know how dreadful you feel. before anything else, please make a dr apt for yourself and explain your needs. first get yourself in a working place so you can deal. more stress on top is only adding more anxiousness. maybe something to help you get over the edge will be beneficial. best of luck. let us know how its going. and take care of yourself first and primary. divvi
Mariposa, I am so very sorry for what you are going through. I understand the stress you are under. My suggestion would be to contact the hospital social worker. She/he should be able to help you with finding a suitable place for your husband, and getting some emotional help for you.
Most of us know from experience that the stress from these incidents and others like them is unbearable and we need all of the help we can get. That includes practical solutions as well as emotional support and anti anxiety and anti depressant drugs for US.
I am heartsick this nursing home ejected him after only two days. I doubt they will take him back, but its close and highly rated. I guess I'll know if I get another registered letter of emergency discharge this week, or if they will give him a chance. They have him on a much higher dose of Seroquel, but decided to add Depakote to the mix yesterday. It is hard watching them be guinea pigs. He was on Depakote twice in the last three months and both times he got worse, not better, but I just spoke to the Dr. at the psych hospital, and she insisted on trying it again. Has anyone else had experience with finding a mood stabilizer that worked? She said he was agitated today but didn't hit anyone, just balled his fist. She also said no nursing home is going to take him doing what he is doing. He is somewhere in stage 6, losing speech, still getting to the bathroom, but not knowing what to do once there, and private, so combative if someone comes in to help him. Without help, creates messes. Sometimes cooperative taking meds, and getting groomed, other times combative or refusing. He is on Aricept 23mg, Namenda 10mg 2 X a day, Ativan 4X a day .5, Serotin, Seroquel 250mg a day, and now Depakote. She said she'd watch for bad reaction to Depakote, and said the only other thing she could do would be Neurotin, a pain killer that would dope him up. Anyone have experience with Neurotin? When he was on Depakote before he had what looked like sudden progression into stage 7, and resulted in eye closing, shakiness walking, loss of balance, unable to sit without missing chair, unable to lay himself down straight, loss of speech, and MORE aggression. She put him on it even though I told her what resulted the last 2 times it was tried (in the last 3 months). They took him off it last time because it didn't help with what they were trying to stop. So upset he's on it again. But he was only getting Seroquel 25mg with it then. Has anyone had good results with Depakote? He never shows this behavior with me, just care takers. I just read a study done in Australia of early onset people, and it said this frequently happens because they are young, strong and mobile, and everyone else in these care facilities are 30 years older, and the risk to other residents causes them to eject these folks to the hospital with any sign of behaviors. I think part of the failure here was they did not have his drugs ordered so he missed doses, they had no PRN for agitation, and they had fear reading his reports and didn't know him yet. I think they could have given him something to aid in the transition. My fear is that if we have to go to a new nursing home, which I will have to locate this week, the same thing will happen. I will get myself to the Dr. this week. Thanks so much for your suggestions and support.
some of us have used Neurontin with good success. I used it for DH for his jerking but it stabilized his moods as well. made him more compliant. the Depakote is something I have not nor want to use. many here I think remember have tried or some are using this one in combo. that seems like a lot of powerful meds hes on. my own personal opinion! If he is not responding or more aggressive I would be suspect of all these meds alone or combo. I am not a doctor of course. only my own personal knowledge on what I have tried. when my DH was going south I chose to start from scratch and add one at a time to see which is favorable or not. but under a drs watch so they can keep tabs on dosings and combos which are compatible. some of us also saw less aggression and better compliance once we took them off the Aricept and or Namenda. in stage 6 there could be some doubt how it helps or hinders, but again my own opinions. I know my DH became much more docile off these 2 meds once i made the hard choice of taking him off . these are very difficult times when they are strong and combative. like she says no facility will take them under these circumstances. its a must to find the meds to help him comply with behavior issues. ps skipping doses is never a good idea. and if i remember there were members here who used the higher 23mg of Aricept and it caused more agitation. but maybe they will weigh in here on their own experiences. good luck divvi
I am one to whom divvi referred in the post above- actually in two of her above posts.
Concerning the most recent post, my husband did not do well on Aricept @23 mg. I know this may sound melodramatic but after only a day or two (from the 10mg. dose) his delusions increased markedly and they were action fueled delusions that were frightening. Depakote had a similar reaction for him. As your husband does, he took Ativan qid and that was really his go-to. He also took respiridone but that was at the ALF only. He had no experience with Seroquel or Neurontin.
Also as divvi mentioned I am another spouse who had a very difficult time finding placement for my husband. He did not qualify for geri-psych, so various meds were tried at ALF and previous to that, at the hospital and rehab. While not formally called violent, he was young, relatively strong, and aggressive and contentious. Looking back, so many days seemed to just be perpetual fog, I just put one foot in front of the other because I had no other choice.
To say what you are going through is difficult is not even close. Sending you best wishes.
Thank you so much to all who responded. I realized all the crisis of the last 3 months had completely exhausted my adrenal glands - I started taking Raw Adrenals and Hi B Complex Stress vitamins, and for the first time in weeks woke up without my heart pounding out of my chest. That will make a world of difference. Its just been one crisis after another for months. TY for the good wishes too.
I did not mean to take over for the posters you mentioned. Mariposa's posts just seemed all too familiar that once I read of her situation I just posted.
abby* your post was for mariposa and was exactly what she wanted to know. if the circumstances are like yours then you did well friend to let her know in detail!! very much appreciated. everyone wants all the input they can get. thanks. its what its all about, just jump in and add your personal experiences! divvi
mariposa, I am another spouse who has had a very similar experience as yours with my husband. He was 58 when dx'd, no other medical conditions besides dementia (FTD), very fit and strong. He had 2 geri-psych stays because of aggression and violence - 1 before he was placed in an ALF, and 1 after he escaped from the ALF. After the 1st geri-psych stay, only 1 ALF would take him because of his "aggression issues". Then he "eloped" after 2 weeks at the ALF, another geri-psych stay and I decided to try to keep him at home because I was advised that if he got kicked out of another ALF, the only facility that would take him is a state run psychiatric hospital for the violently insane (including the criminally insane). Not only did I not want him in that environment because I was afraid for his well-being, but the cost is $150,000/year.
My husband's aggression was exacerbated by Namenda. A DON at one of the facilities I visited told me fully 25% of the dementia residents in her dementia wing became aggressive and violent on Namenda. I know it was responsible for escalating his aggression. While in the geri-psych they put him on several different medications and combos to calm him and manage his aggression. I will share our experiences with each med in case it helps you. Risperdal-made him a zombie after the initial dose and was discontinued. Depakote-discontinued after 2 days because of high liver enzymes. It did seem to be effective while he was taking it. Seroquel-effective in managing his agitation and aggression. Dose was 225 mg /day. Neurontin added to replace Depakote. Dose was 300 mg/day. Both Depakote and Neurontin are ANTI-SEIZURE drugs and frequently used for managing epilepsy. Clonopin used as a PRN for managing extreme agitation.
He is now on a combo of Seroquel (200 mgs/day), Clonopin (.5 mgs 2x/day), and Neurontin (1200 mgs/day) and is generally calm. His geriatrician advises me that there are few risks with Neurontin and since DH has tolerated it well (of course not everyone does) he will continue him on it. For now this combo is working for him. That's not to say we don't have moments where he threatens the aid or me, but we have the clonopin or Ativan for managing that.
My husband is also very difficult when someone tries to clean him, whether it's bathing and/or toileting. An experienced aid should know to try to distract your DH or stop and come back in a few minutes and try again, not force him. Just yesterday my husband threatened the aid (we have ft help at home) with his fist and said "I'm going to smack you". It's his way of letting the aid know he's invading his space. He always warns you and won't hit you if you back off. My husband is definitely ne of those very difficult cases.
BTW, your husband's aggressive history will ALWASYS follow him...there's nothing you can do about that. My husband has been cared for at home and has no other documented incidents of aggression other than those 5 years ago. Yet when he had to go to an NH this past summer for rehab for a broken knee, the NH would not put him in with the general population without putting him into a single room (not covered by medicare) and a 24 hour aid (that I would have to pay for) to watch him. The other choice was putting him in their dementia unit. Why???? Because they didn't want to risk that he would injure any other residents based on his history 5 years ago.
I know how stressful this is for you...I remember all too well what it was like 5 years ago. Neurontin has been very successful for us and used in the above combo has helped manage most of his behaviors.
Thanks so much. The Dr. is not listening to me. Both times Depakote was tried, is didn't stop the aggression and he had very bad side effects. I would have preferred she try the Neurontin first, and would not have agreed to Depakote again, but she didn't let me know he was on it until 2 days later, then insisted she thought it was best. They had tried it twice in the nursing home. He's been on the Aricept 23 for almost a year, and the Namenda for 6 years, so I question if it could cause problems now. He had been on 10mg Aricept 2x a day prior. About every 9 months a dose would stop helping and they moved it up 5 mg. So now he's on the highest possible, and I suspect it and the Namenda have just stopped working and he's progressing. Some of his hitting seems to be from loss of language - aphasia - the throws his hands up in the air and tapped at the aids in the back when he needed something and they viewed it as hitting. Now grabbing their wrist if he doesn't want to do something. I am not yet sure where we can place him and I only have days to find a place that will take him that is close enough. I don't have a living situation where he can move in, so only other alternative would be rent a place for him and hire help. The money wouldn't last as long, and then if he needed nursing home care again, medicaid might be hard to get? I was thinking if he started without bad nursing notes following him I might have more success placing him. But interesting the bad rap follows.
Good luck. The psych hospital should have an omnbudsman you can speak to about the care your husband is getting and the Drs. resistance to listening to you about the meds. If not an omnbudsman, speak to the head of psychiatry. This doctor's behavior is not acceptable.
And yes, the bad rap follows, no matter how long ago it was. Unfortunately the notes are in his file and are a permanent part of his record that all nursing homes/facilities will get when considering taking him.
The good home that sent him back to geri-psych cannot say they will take him back & I am paying for a bed hold. They first said they would re-arrange something to fit him in their behavior unit, but now are saying it is based on nursing notes and if they have a bed and if they can meet his needs. He is going to be released next week and I have only one poorly rated home (one star on the Medicare Nursing Home Compare website) that says they will take him as a back up plan. Have spent most of the week touring & talking to homes. The Dr. has sent a statement to say he is no danger to self or others, yet another I was considering waffled today, and several rejected him outright based on two geri-psych stays so close together. This is so depressing.