My husband is in the hospital
After struggling with my husband’s escalating agitation for 10 days at home, I took him to the ER Wednesday night. It was the worst night of my life. The minute they put a wristband on him, he ripped it off and all hell broke loose. We were bustled into a locked room in 30 seconds. For the next seven hours, they knocked him out with meds. Every time he fell asleep they tried a procedure (chest x-ray, cat scan, blood draw, etc.) and he woke up and started fighting. (DH trained in the martial arts for 30 years, and for someone his age he is pretty fit.) It took eight people to hold him down. He was finally admitted. When he woke up as they transferred him to the bed, he screamed like someone was killing him — which, of course, he thought they were. Diagnosis: escalating agitation and delirium. He is now in a private room with 1;1 nursing and security. They will not let him walk outside the room, which makes him really unhappy. They are throwing all kinds of meds at him ( @M1, you were right about the depakote), and he seemed a little better Thursday. Friday and Saturday, he seemed pretty much the same. It is pretty discouraging. I come home at night to a house he will never live in again with me and my heart breaks all over again. They are pursuing placement in the facility I selected, but the facility has made it clear they will only take him if his agitation is under control. I spend all day and most of the evening at the hospital trying to keep him calm. He is under their care now, but it is still a lot for me. And I am so worried about the future. I knew the day was coming when we would not live together, but I didn’t think it would happen this way, or so suddenly.
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I just read your post and I just want to tell you I am praying for you and your DH. Hopefully they can get his agitation under control and he will be able to go to the facility. I am in stage 8 since last Nov. but I remember well all the traumas and decisions I had to make the past 7 years. Just try to get through each day and trust yourself that you are making the best decisions for both of you. Hang in there!
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I've been in exactly the same place you are and know exactly how traumatizing this is. It breaks my heart all over again. My partner was not combative in the ER but became combative later when they didn't give her the correct meds. Even though it was the hospitals fault that this happened, my first choice facility wouldn't take her. So i guess my advice would be to have a backup selected also-i hadn't done that, and it was a scramble. I hope that doesn't happen to you.
Let me give you a bit of hope. The first year was absolutely awful until I was able to get her transferred to my first choice facility. Two and a half years on, I still rattle around in this house that is too big and I struggle to take care of our farm. I don't see many people, and i long for the day when i can sell up and change things for myself. She has progressed, of course, and is still resistant to care, but she is for the most part calm (thanks to Celexa, Seroquel, and now Ativan which has helped a ton) and happy to see me every day. She no longer remembers living anywhere but memory care. She has crippling aphasia, but she tells me every day how much she loves me. So it will get better than where you are now.
Hang in there and update when you can.
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tigersmom, can you get him transferred to a Geri-psych unit until they get his behaviors under control? At least there, he would be able to walk around the unit. When my DH felt restless in a hospital room, I did chair exercises with him, and played music on my phone and sort of danced with him. The exercise not only released energy, but distracted him from his agitation. I’ve been there, and it eventually got a little better. Hang in there. ❤️
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my I ask you a million questions about the his progression up till now? That’s the one thing I always question, my wife for last 3 + yrs really not too bad memory and gets confused no driving. I only pray she stays like this forever , but know better. Did this change to DH happen fast ?
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I can only imagine how that hospital viist was. There is no way I could take my DW to the ER again. It would be too traumatic for her and myself. She's on hospice so hopefully I won't ever have to again but never say never.
Hoping things settle down for you.2 -
My heart breaks reading this. Keeping you in my thoughts and prayers.
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It's hard to see it now, but once they have his meds right, it will get a little better. Early on my husband was hospitalized twice for agitation, aggression, delusions, ect. The first time, they sent him home after 2 days. I didn't know anything about dementia or even that we were dealing with a type of dementia (it's not the first thing that comes to mind for a 63 year old). The second time I held my ground, refused to take him home because it was unsafe, and they finally got a diagnosis and meds started. I'm not exaggerating when I say risperidone probably saved us. Once they get your husband's meds right, it should get better. I know it's going to be rough on you as you get used to having him in care. Please be gentle with yourself. Sending you strength.
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Unfortunately I do not have to imagine what you are goin through. You are in an overwhelming nightmare.
It will take all the courage you can muster.
We are with you in spirit and here to help any way we can…..
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So sorry. I know exactly how you feel. I had to place my DH in memory care in January due to my cancer diagnosis. It broke my heart. They managed his meds and he received excellent care. Praying things will get better quickly. See if the facility has a support group. Get some rest.
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tigersmom, I know how hard it is to come home to an empty house knowing he will never live there again. My DH entered MC seven months ago. He went directly from the hospital to the MC unit like your DH will be doing. It is heartbreaking and gut wrenching. Somehow one day at a time we get through it. My DH is back at MC after being in a geri-psych unit for two weeks due to extreme agitation and aggression. This may be an option for your DH if the hospital can't get his agitation under control. My heart goes out to you and my prayers are with you.
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Each case of Alzheimer's is different although there are threads of similarity. My DH had MCI diagmosed 7 and 1/2 hrs ago and then he progressed to moderate dementia and then severe after he suffered a fall and had to have emergency brain surgery for many subdural hematomas ( brain bleeds ) . After that he had in patient therapy at a rehab place for 30 days and I put the house up for sale and moved several miles away to independent living 5 and 1/2 yrs ago.This place also had AL and MC so 4 yrs later I moved him to MC. He was there for 15 mo and passed away. Thankfully he remained his pleasant self but spoke very little and had pureed food as he had difficulty chewing food and swallowing. He was ambulatory using a walker.Each journey is different and it's important to read all you can. The 36 Hr Day is an excellent book. There is info re: stages and approximate time for each stage but it is not foolproof. My advice is to enjoy each day and try not to obsess about the future yet be ready to have Plan B when and if she progresses. Sad to say, noone ever improves but you may have some years ahead of you that are ok. Good that she no longer drives. You may want to start your own thread and then will receive other comments from other posters.
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Tigers mom, I was there 6 months ago when my husband went to the ER with pneumonia and went from being a pleasant, confused, man with no short-term memory to a frantic, aggressive, frightened soul who had to be put in four-point restraints and screamed to be let go. It's the most horrifying thing I've ever seen. What I can tell you is that IT WILL GET BETTER. In our case, he came home for a week and then went into a very expensive MC because it was the only room we could find. That was more heartbreak. After two months there I brought him back home but could not manage his manic sundowning, so took him to a small MC facility close to home where he has been since. It is still heartbreaking, and at this stage I think it will be that way until after he passes — but it not the nightmarish grief and shock that it was in and immediately after the ER. Life continues and you get into a routine. I am still very very sad, still angry that this happened to him (to us), still hope to be able to bring him home for a length of time. It's not good, but it's better — please hold on to the knowledge that it will not always be as bad as it is now. I will hold you in my thoughts. Keep us updated and take care of yourself.
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I don't have more to add…just hugs…you will get through this.
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Hello, friends. I thought I would ring in with an update. Today was day 11 of DH’s hospital stay, and it was the worst day, I think, in the history of his disease. They have been trying to stabilize him with depakote plus low doses of escitalopram and abilify. He started full dose of depakote last Saturday (250-250-500). Last Sunday he was practically catatonic. He was better Monday, then very agitated Tuesday-Thursday. On Thursday, they halved the depakote dose. Yesterday he was really good — way more verbal, easier to understand, more successful at expressing what he wanted and needed. They have been using Haldol injections as needed when they can’t calm him otherwise. He got two overnight Sunday, one late night Monday, and none since. He slept poorly Thursday night, and not much at all last night. Today when I walked in at 9:45, they were administering the first of what would become three doses of Haldol between that time and 3 pm. And he still kept trying to climb out of bed. All he wants to do is walk. He screamed like he did the first night in the ER. He has basically stopped eating. He refuses vitals and won’t let them draw blood. Occasionally,on a good day,he will hold my hands and let them do the vitals. I am in despair. I feel like I took them an angry but verbal person who ambulated well and they have turned him, in 10 days, into a shambling wreck. I am so sorry he has to be there, and I did not expect him to like it, but I did not think it would be this terrible.
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Thank you for the update, I was wondering how you were. But so sorry. Is he in a geriatric psych unit, or is he still on a medical floor? I would really, really push for a psych unit if he's not already there.
You did NOT do this to him. He was unmanageable at home too. But it's not pretty.
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so sorry. It sometimes takes weeks to get meds adjusted. Ask for a Geriatric Psychiatrist if he doesn’t have one.
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Tigersmom, I’m so sorry you are going through this. I’m dealing with very similar issues right now. They are giving my husband depacote and haldol also. And occasionally some zyprexa on top of resperidone. I don’t know if they know what they are doing. He too keeps trying to get out of bed so he can find the way out. He fights them. The security guys all know him now….Saying prayers that things start to settle more quickly for us.
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Thank you, friends, for your feedback and support. @M1 , he is on a medical floor with psych following. I took him to the hospital where he was diagnosed and has had all his treatment. They do not have geripsych there, despite the fact that this is a very large complex in a very large city. My niece, who was chief psych resident at their sister facility, thought this would be a better place for him than a psych ward. I spoke yesterday with one of his best friends, also a DO, and he suggested I ask for a psychopharmacologist consult. @SDianeL, I will ask for a geripsych and that today. He got another dose of Haldol early this morning, but he took his nighttime meds, which is something. And @LaneyG , my heart goes out to you. I, too, wonder if these folks know what they’re doing. It does not help that it went off the rails on a weekend, when the psych consult did not seem to have a clue. @LaneyG , is your husband eating? I am pretty worried about this, along with everything else.
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It sounds like staying in bed and not being able to walk around is part of the issue. That could be relieved on a true psych ward. I would really think hard about it even if it means a hospital transfer. Please do keep us posted.
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Yes M1. I think you may be right. I’ve thought about impact of forced bed rest. It is so confusing to sort out what is causing what, and what symptoms would subside once back in a routine environment. I think in my case the agitation might just be extended. He would still want to go places such as his former home which we sold or to see his mother who is no longer alive. Tigersmom, yes my husband is eating very well, I think way more than he should be actually. I like the idea of a psychopharmacology consult. Let us know if you do this and if you think helpful.
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I am going through the same thing.My husband was getting aggressive at home. It got to the point I was barricading myself in my room and sleeping in my closet. The police referred me to the crisis unit social worker and we placed him in a psych unit for evaluation. They switched up all his meds and now a MC unit has taken him in on a month trial basis. the first day he forearmed staff and the police had to be called. the next day he threatened staff again and they said they would not take him back without an aide at least 8 hours per day until he settles in. Still making threats when he calls. Not sure what I am going to do if this doesn't work out. He can't come home, it's not safe. Where do patients like this go?
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addy, you may have to take him back to the ER and have him transferred to a Geri-psych unit. Sounds as though he may need more adjustments to his psych meds. When my DH was in a Geri-psych I had to advocate for him so he wouldn’t be released too early. Hopefully the MC would take him back without an aide if his meds were working.❤️
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@addy103:
Sounds like he needs his psych meds optimized. Is there a doc you can ask to make changes (PCP, geripsych, or MC doc)? Otherwise, he may need readmitted to the psych unit.
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I seldom post but frequently read. My journey has been relatively easy compared to some. My wife had 2 strokes 6 months ago and that forced the Memory care issue. She is doing well and is about the least cognitive impaired one there. She has her delusions and no short term memory and very little long term memory but recognizes most people even though she may not remember names. I have little to add here except to say I truly respect those of you that have to deal with such agitation and forced hospital stays. Those situations and decisions are so hard. Even in my situation I often second guess myself. You should be proud of yourselves for being there and caring. God bless you
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tigersmom,..My wife was admitted to the hospital via ambulance on 8/11 and had a 24-hour sitter for 10 days due to being a flight risk. She was discharged and transferred directly to MC on 8/22. She seems to be doing very well. The drugs have worked wonders on her delusions, hallucinations, and aggression. It turned out she had a pretty severe UTI, which may have played a big part in her behavior.
I’m glad to hear they are pursuing placement for you husband. For what it’s worth, I contacted hospice while smy wife was in the hospital because the MCF I had a deposit with rejected her due to the flight risk. A skilled nursing home was advised, but even they refused her because of the flight risk. However, hospice found a place and handled everything—they’ve been a godsend. You might want to reach out to them and see what they can help with.
And yes, I agree. I knew the day was coming too. Knowing she’ll never come home is a tough pill to swallow. All I can say right now is that I don’t know how I feel, but I’m not going to make any sudden moves or decisions. I really hope he gets into MC and gets the meds he needs, and you get the rest you need.2 -
I don't see any comments here about using exercise to reduce agitation. Taking walks outside is the only form of exercise my DH can do any more, but when we skip those walks he gets agitated.
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My DH walked our two goldens 4 -5 times a day every day! Didn't do anything for his agitation.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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