This weekend was the worst fearful experience on my life to date. (short version) Friday: Hubby was awoken in a sea of pee, crying his eyes out,uncontrolled crying, I had the day off for Doctors appts for me which I couldn't make, cancelled last minute and was charge. Saturday: all day agitated at me for not doing anything and doing everything wrong that by evenings end I feared for this first time in my life that he would hurt me, scariest moment of my life. Yes, got away from him....calmed him down gave him an Ativan and that night he pace and then peed in the hall (first time for that ) after I went to sleep. The next day he ask what happened and I explained in general that he scared me and he grab me. He was beside himself and said to send him away. After another Ativan that pass. Sent email to Doctor yesterday about incident ......Anger management need asap. I don't mind cleaning up pee everywhere, I don't mind caring for this Wonderful man no matter how exhausted I get, but fear of being physically hurt ..........not happening. Will be doing as Vicki and others suggest .....be prepaired......will make appts to view area Alzheimers facilities. I want him home and with me but not like this.........
Terry--right now, and at the level of agitation you're describing, he will have problems whether at home or at a facility. It sounds to me like medication oversight is needed in a form similar to what I'm going through with Jeff right now. That is a longer term hospitalization for the purpose of finding the right medications that will keep him calm and keep caregivers (whether you or at a facility) safe.
If this behavior is still flaring up, I am thinking that you will need to have him hospitalized even at a regular hospital while working out where longer term management is available. Do you have a neurologist or other doc who might have insight into an appropriate geri-psych unit?
Emily my current Neurologist leaves alot to be desired. Been receiving more constant care and medications from PCP. After Aniexty attack and ER visit PCP has been monitoring his meds and condition. Your right that even a facility in that condition would have kick him out. Zoloft only at 100mg with the ativan chaser (.5 in am and pm). He was for a brief time on the Seroquel (50 at PM) but they removed after the Aniexty attack thinking that was the major issue. I have a respite weekend coming up on the 25, first one in a year and really thinking will it be possible or make things worse.
I would try the Seroquel again or other antipsychotic before it gets out of hand and you have no other choice but psych hospitalization to regulate meds. From our experience avoid this if possible.
First, make sure he doesn't have any type of infection. That will usually make his symptoms worse and is easy to treat. It isn't always obvious.
The problem with meds is that it is a matter of trial and error. What is worse is that some meds take time to get on, and if it doesn't work, get off. Emily's advice is good, sometimes you need a hospital stay to help determine the best combination of medications.
Terry54--I would look at it this way: this weekend, you were given a warning. If you were fearful for your safety, I think what Emily and Paul said about a hospital stay makes sense. In my opinion, a good PCP is sufficient to manage the care of the more "docile" AD patient, but if aggression enters the picture, I think you need a competent specialist (neuro). If you don't like your current neuro, is there another you can get in touch with, explain the urgency of the situation, and at a minimum, get an emergency appointment? I felt that I wanted to get my husband's behaviors under control first, then do placement, rather than the other way around.
i agree with marilyn. once aggession to the point of fear enters the picture, its time for the big guns to assess his medications. this usually does not go away without a combo of medications to iron out the mood swings. and remember it can escalate without warning or provocation. its a scary time. take care and watch for warning signs. divvi
Because of his seizure disorder, H is precluded from even trying many meds. Additionally, he has had very atypical reactions to "milder" meds, such as depakote. I bring this up because during the months of rage, ativan was the only med that worked.
He was up to 1mg tid and N said I could supplement it with the generic dyphenhydramine (sp?). This did not do much for the pacing but did help behavior. It sounds though, that my H is further along because he does not have the ability to subsequently question any of his words or actions.
I am sorry you are going through this.
Like Charlotte, I would not discount the influence of the moon. I don't know if saturday was technically the full moon but it was close enough. H is currently at a rehab snf. Saturday there was an incident that caused a "lock down" and then a delay of more than an hour for dinner. The fifty or so patients, mostly all in wheelchairs, were held at the nurse's station instead of being allowed to go to the dining room. The nurses were saying "this! not on top of the full moon", and they did not seem to be kidding.
Terry, was the doctor able to get back to you today? We only ever used Seroquel, it worked wonders for Lynn. I am sorry you had to experience this, it is so heartbreaking...... ((hugs of understanding))
ativan worked wonders for DH in a pinch with issues. it put him into a smiley lalaland. if i had to do over it would be my go to drug for control behaviours. divvi
I thank you all for your comments, advice, concerns and help. If I were in a Dicken's novel Saturday night I saw the ghost of Christmas future and it scared the heck out of me. Hubby lives in Alzheimers time all week while I work, Saturday comes and he must enter my world so I can get things done. I believe in full moon, I believe black box pills are coming, I believe placement will also happen and I also believe when He says he'd rather die then ever hurt me. I now have things to get done, new neuro, check local places for possible placement and cost's .....because that another set of stressors, paying/private pay to live in a place like that when you can't sell your house in this market. PCP has place him on Ativan 3 times a day with the option to me for a fourth. Yesterday after receiving his call I did just that gave him full and the extra and last night was enjoyable....it's not perfect but agitation was lower and livable. Thank you all again.
Terry, I am glad the Ativan has taken the edge off. My DH is one of the spouses who became violent and needed a stay in a psych hospital for med adjustment. As Emily says, it's generaly a lengthy stay - 4+ weeks.
It is important to get his behaviors under control BEFORE placement because if he gets placed and is kicked out of the ALF due to his behaviors, it is unlikely that another facility will take him and your options become very limited.
DH is on Seroquel, neurontin and klonopin to control his aggression and agitation. This combo has worked well for 3+ years.
LFL may I ask a couple of questions, was the behavior from what you can tell out of the blue or could you see the progession to that point of violence? Looking back on the day I should of seen it coming, the action/violence was overted but only by my calmly asking him to let go of me and leaving the room quickly. Thanks for the drug names, not familiar with last two will check them out. Please forgive me for asking is your DH at an ALF and if so how did you chose it? I think because we are not on a Black box presently PCP is hoping Ativan will keep us even tempered for a while. Hubby knows where he is and would not leave me easily. And the cost is going to be an issue but better to die broke then broken.
Terry, honestly I think I should have seen it coming but didn't. DH had just been dx'd with "presenile dementia" by a neuro 2 weeks before the event. DH had been physically violent towards me probably for at least a year-choked me almost to death, threw a 32lb vacuum at my legs and knocked me to the floor, tried to break my leg, etc. Even though I was honest with the neuro and told him about the physical violence I was enduring, he only prescribed lexapro for DH and said I should buy some pepper spray and spray DH should he get violent. The night I called the police, DH sat across the room and asked me why I was in HIS house. I told him quietly that we were married and that it was our house and it was ok I was here. When he went out to walk the dog I tried to lock him out of the house, but he got it and hit me as hard as he could in the forehead. The police took him to jail and hen the local ER which transferred him to a psych hospital for meds. Unfortunately they did almost nothing for him during his 4 week stay. They did prescribe Ativan and Haldol as needed, however Ativan is not a long acting drug-it wears off after a period of time and creates "ups and downs" rather than a continual effect.
After a trial placement in an ALF from which he "escaped" after 2 weeks and another psych hospital stay (3 months) he has been at home with me for 3.5 years, BUT the psychiatrist would only allow him to live home with a full-time live-in male aide. I was advised 3.5 years ago that if I had to place him in either an ALF or NH I would have great difficulty because of his "track record"-violence towards me, violence towards other patients in both psych hospitals, escape from the ALF and that the only option I would have would be a psychiatric nursing home which has only the most difficult patients with psychiatric histories, not just patients with dementia behaviors. For obvious reasons, I did not feel he would be safe in that environment.
Only seroquel with the others mentioned above have controlled DH's aggression. I made the decison that quality of life for both of us outweighed the black box warnings. Quite frankly if he were to die suddenly of a heart attack or stroke, I believe it would be a kinder death than dying slowly from dementia. FYI, there's supposed to be a generic form of seroquel available in March of this year which would significantly cut costs.
Terry, I hope knowing my journey will help you with yours.I am here if you need to talk or know more. (((HUGS)))
Terry54--you asked if aggressive behavior comes out of the blue or is there a progression to it. I think the belief is that there are generally triggers that cause the behaviors to happen. Trouble is, many times you need to be Einstein to figure out what the triggers are. They could be overstimulation (too much noise is common); overtiredness; too hot; too cold; hungry; thirsty; full moon; sundowning, a full bladder, receiving personal care, and on and on. For a while last year, just seeing his own reflection--that he didn't recognize--would upset my husband. I like to compare it to when an infant cries--parents know to check whether the baby is wet, hungry, etc. This is similar because our LO's usually can't express exactly what is setting them off. Sometimes, keeping a log of problem behaviors can help you figure out if it's apt to happen at a particular time of day or when a specific activity is happening.
That's right Marilyn--that was one of the questions I really got grilled (in a nice way) on by the ALF staff--did there seem to be anything particular...a trigger, a time of day, an event? Maybe, but it was so undetectable as to be random for all practical purposes.
this is living life between a rock and a hard place. Thanks LFL for sharing.....your an amazing women ! Marilyn and Emily thank you also ....your insights and information is extremely extremely helpful. I think the ativan will be a bandaid for now. Last night was a mix bag, no aggression just moody swings. Watching the tone of my voice not to allow anything to trigger past figuring out whats bothering at the moment. Your right Marilyn "you need to be Einstein" Well this morning we can now add wandering and peeing in all new places. I am an extremely sound sleeper....I got up for work to find him in the living room chair asleep and the hall carpet soak......not mad just don't know what to do besides clean the pee, which I did now off to work. CNA coming in shortly and stays with him until 3 now I have to worry about after that and now the nights!!!
Terry54--thank goodness, I never had the urinating problem here, but others may have suggestions. My guess would be he can't find/recognize the toilet. We medicated Steve so he'd sleep all night--I'm not as sound a sleeper and that was one of my "lines in the sand" about keeping him home.
Watching your tone of voice is a good idea. I found that Steve was (and still is) extremely sensitive to the tone and the volume level. When someone is speaking in a loud voice, he still says "You don't have to yell at me." His doctor told me that when a dementia patient is younger, their hearing is intact and anything loud can really disturb them. Older dementia patients who have lost some hearing and vision are actually at an advantage with this disease (avoiding overstimulation)!
emily--Jeff seemed to have delusions and paranoia, right? I don't know how you can figure out the triggers if a lot of that is happening. Steve never had problems in those areas, so his behaviors were easier to decode--it was pretty much cause and effect.
Yes Marilyn. I think that if there's a trigger for the paranoia, it's entirely within the world of his delusion. There was no rhyme or reason to when he'd be reading invisible messages in the air. It's just in his head.
Made my first contact to tour an ALF ......Emily your most recent at this what am I looking for ??? Anyone else's thoughts ??? .........my stomach and heart feel like they have been sucker punch ! LFL how did you find someone for nights??? When Rick is with me (in the most stable mind he can have) going to an AFL would be out of the question, when he goes into "the zone of alz" he'd do what ever I tell him. My rock and hard place life. But the deal breaker for me is if I can't sleep, have enough health issue starting from the stress, sleep is a must ! So could having someone stay at night be the answer?
Because DH has LTC ins, we have to go thru an approved home health care agency to employ aides. Yes, possibly having an aide come in for the night time hours could be a solution. In my area,the cost for an hourly aide through an agency is $20-$22/hour.
We have a live-in aide who is handling the nights at the moment but if DH continues to be up at night I may be forced to hire a 2nd aide to cover nights. That will be what will tip the scales for placement in a ALF due to cost (would be about $500/day for 2 aides at home and LTC ins will only cover a fraction of that for home care but will pay 95% of ALF costs).
What's driving my immediate fear right how is his navigating the stairs (up stairs bedroom) That will have to change tonight. We have no insurance, everything is out of pocket :( everything!!! Cost of night person would have to be from an agency so references could be check. Can't function if I can't sleep. Will restructure house this weekend moving bedrooms down stairs. Will have to have carpets rip up on the second floor and replace .........wish I could sell and move tomorrow !!!!!!!!!!!!
Putting him downstairs at night and having a care person could work as a good step in the right direction. Because of your description of how his cognitive condition is quite changeable, it does seem like you'd have to have some sort of understanding with him to go the ALF route. Would fiblets work? Jeff's awareness of his surroundings faded markedly in the month or so before he moved to the ALF, so that's actually been a help to us.
As for what I was looking for--Daughter and I did get a vibe about the place I selected that made it seem like the best choice for Jeff. Friendly people, care seemed good, a unit with enough room to roam about to avoid him feeling restricted. And it's proximity to my house was a big check mark on the pro side.
Your right Emily.... his cognitive condition is quite changeable. He's not ready and to be honest neither am I for an ALF (but gathering my info to be prepaired) but having said that I can't forget that the ghost of Christmas future and I know that it will require drugs that will make taking care of him at home and working impossible............this night wandering and thinking the entire house is the bathroom can't continue so now we enter Plan B. Bedrooms and furniture moving tonight and this weekend. I have slidders and can move His mood at lunchtime today.......sad, depress and just sullen. After talking on subjects that made him happy and hour later as I went back to work he was a happier person. Don't know what I will find after his nap. On the bright side I have slidders and can move the furniture all by myself :)
Vickie everything I have this kind of evening I think of you and thank you for Good information given and words to live by. Waterproof mattress covers......I can now change a bed out in less then 10 minutes. Thank you Vickie, thank you thank you thank you
Oh, Terry, that's what we are here for! I think of you, too, and pray that things get calmer for you. This is a rough road we travel with its ups and down - the roller coaster ride- . Be careful moving that furniture - even with the sliders. Bless you, Girl.
terry54 wishing you the best with your new living adjustments. it is sad to read those of you who are having to deal with so many new issues. best of luck! divvi
Terry, You have my prayers. If only there were a drug to dry up their pee for 23 of the 24 hrs. Maybe we could get a handle on all this.
Be careful moving all that furniture. You don't want to put yourself out of commission. God has a way of taking things out of our hands just when we think there is no way out.
Vickie, I also must thank you for the info on the mattress covers. I went out right away and bought one to be prepared. So far that problem hasn't happened.. ....never know when.
For almost a year I couldn't get dh to go to a restaurant, fast food or otherwise. Now I have introduced it again and he enjoys it. Don't know how long it will last. I really think he had this thing about money going on and was afraid we were going to end up in the poor house. Could be the antidepressant, Paxil, is making life easier for dh. It is for me. Doctor said I could increase the dosage if necessary. One day at a time, I guess.
Shirley, I am so happy to hear you can go to a restaurant again. DH loves to go too and we do lunches only since he goes to bed by 6 p.m.! It's an outlet for me, too. Still have the mattress cover on, but so far, haven't had use of it!
That is real good Shirley that you can go out and eat, a break from the cooking and cleaning. Thank you all for your concern on the furniture front. Well it's done and I am no worse for wear :) I built the coolest fort. If only I was 5 again. This has created a no pee zone for more than 1/2 the bedroom. And Shirley if we could invent dryer up of pee .....think the money we could make :) Vickie you would be proud I have a complete set-up now for the late night pee/Niagara Falls experience ......2nd set ready to go at a moments notice. Necessity the mother of invention I guess. And thanks Divvi for good wishes. We are now on Ativan every 4 hours, would like a calm weekend this weekend......Please......really pretty please with sugar on top.
I don't know what happened, or is this another phase of Alz, but these past two weeks, Dh has been so calm and not had any anger episodes at all. he's so loving and fusses about me, trying to do what ever pleases me.... The only thing that's on going is the hiding stuff. Every morning after he shaves he hides the shaver...At last I'm learning to let that go, and when he's not looking i go find it and put it back in the bathroom....just not worth the fight we were having very day...boy, am I a slow learner!