Regardless of spelling, I have a tough decision to make. DW in advanced stage of Alzheimer's is now seeing things and is afraid at night time. Family doctor said we could try sleeping pills or go to a ant-phys. med. The one I don't know how to spell, scares the heck out of me but I want DW to not be afraid and tormented. Has anyone else experienced this? I am trying the sleeping pills now, DW eventually goes to sleep but is still seeing people and afraid. I sit with her and try to comfort her until she falls asleep. Please share if you have had a similar experience. I am really at a loss here. I don't want DW to be spaced out all the time but I can't stand to see her afraid and lost.
I found that a few medications had to be tried out over time to find the best one. But, sometimes conditions change, and new meds have to be tried. It seems to be a hit-and-miss method and one best handled between you and the doctor. He will need your observations in order to make the best choice. Some have had to have their spouses admitted to hospital in order to find the right drug, or combination of drugs. They are more expert than I am and will be along to help you. You don't want her to be tormented and afraid as you see her now on the sleeping pills. The right anti-phys. med, in the right dosage, does not have to space a patient out all the time.
Hi ronny, all of us were afraid to try any anti-psychotic meds for a variety of reasons, including the dire "black box" warnings on the meds that say it can cause stroke and death in dementia patients. But what it comes down to is this...simply the quality of life for your spouse and you.
Your wife is hallucinating and may be paranoid and that can be a very scary situation for both of you. In our case, my husband did not recognize me one night, became violent, hid all the house phones and pursued me to an upstairs bedroom to harm me or even worse, kill me. I was forced to call the police for my own safety. That call led to jail, long stays in psychiatric hospitals, different medication combinations and finally a return home on the right combo of meds. he is functional, not "spaced out" and we live together relatively peacefully.
The anti=psychotics can and do offer relief for both the demented spouse and the well spouse when properly prescribed. Most doctors will start with a low dose first and see if that's effective. If not they may prescribe a higher dose or a different medication. It's an art, not a science because everyone reacts differently to different medications. The most important thing is that you find a medical professional who is familiar with prescribing these meds for people with dementia. You want to help her with her fears and the right drug will. I doubt the sleeping pills will help the situation at all.
Remember, nothing is irrevocable...if you try the anti-psychotics and don't like the effects or they don't help her symptoms, you can always stop them.
I know these are tough decisions but allowing her to continue with hallucinations and/or paranoia is not good for either of you and has the potential of unexpected consequences and safety issues for you both. My thoughts are with you.
its my belief most of us have to come to this choice - but its always a choice of whats best for the patient. if they are frightening and scared its not a pleasant experience for them or us. many of the meds don't produce a lot of the dread side effects but like LFL says it takes finding the right one for the specific person. not every med affects each dementia patient the same as we well know. many here have had good experiences with Seroquel in low doses to start and once the body adjusts to any new med it can prove to be a valuable asset and our loved ones are in a better place. I would not want my spouse frightened for anything and I found Ativan adjusts him to the right point hes compliant now. you will never know if its a good match til you try. but remember most meds need a time to work into the system for best results. and I am also a firm believer quality of life over quantity.
It unfortunately often happens that the onset of these type of paranoid and delusional symptoms is just the start, and they worsen to the point of unmanageability, at which point you have little choice. Might be good to start a trial of something.
Thank you all for your comments. DW has been on Seroquel for three nights now, no improvement yet. We will give it some time. Have already tried Ativan and sleeping pills. Dr. took DW off the sleeping pills when he gave her Seroquel.
It will take several weeks before the Seroquel has any affect, and even then, the dosage/time it is given may have to be tweaked. My husband was on anti psychotics for about 8 years and it gave him quality of life. He was calm, could enjoy things and his sense of humor even came back. The only downside I can see was that the drugs may have caused the seizures that actually ended his life, but there is no question in my mind that I would make the same choice over again given the same situation.
Thanks marilyninMD. DW has had pin strokes in the past. That is the main reason I was concerned about going on the Seroquel. Just one more thing for me to feel stressed and guilty about I guess. We are in the fifth year since we were told it was Alzheimer's. I just could not stand seeing her afraid and mentally tortured.
DH has been up every hour or so at night, delusional or hallucinating, plus wanting to go on the commode, or have something to eat. The Ativan was not doing anything except, I think, making his whole body so "spaghetti-like", maybe flaccid is the right word, that he had a couple of falls. One was not witnessed--I found him on the floor two days ago--he had fallen flat on his face--looks like he's been in a fight--black eye and swollen, bloody, scraped nose and face--the other was yesterday where he just collapsed and went dead-weight on me while I was getting him off his commode. Hospice suggested we just keep him in bed instead of me trying to do all those difficult, frequent transfers. I am finding it a lot easier to place the urinal for him than to transfer him every time. The doctor said to hold the Ativan and started him on Haldol last night. It did absolutely nothing--if anything, he was more agitated and delusional than before. I got an hour of sleep from 9pm to 10pm, and about three hours from 3:30 to 6:30 am, but other than that, it was yelling and calling out, using the urinal, or asking for something to eat all night long. (One reason he is on Hospice is that he stopped eating….so what is going on?) Anyway, I'm not impressed with Haldol. I am thinking either it takes awhile to kick in, or he needs a higher dose. Or Seroquel, maybe. Sigh. I don't need eight hours sleep, but I need more than I'm getting to be able to function. I told Hospice that a four to six hour block of sleep would be all I needed, if possible.
many of us find that Haldol can cause more agitation then some find it works ok for their spouses. in my case it caused more agitation. the issue of the commode seems like that could be reduced with just getting him into the depends at this point, esp since you have hospice and they usually can supply pads and diapers, if you chose. he will learn to just go in the depend rather than asking to transfer. its much easier on all. I would hope hospice would have checked for urinary tract infection as well with this behavior just to be sure. also remember we had a full moon and many of our spouses have very odd and off the chart behaviors associated with this phenomenon. your hospice should have a volunteer for you to call for respite for a few hrs as well which comes with the hospice sign on. plus you should be able to get 5days of respite with him in a facility thru hospice and your social worker but you need to ask how often they will offer it. sorry no sleep is very stressful. when they get dehydrated they can get uti very easily. divvi
Forgot to say we do have a baby monitor now, and the aide suggested maybe a bed alarm The nurse called and said to double the Haldol tonight. If that doesn't help, she will call the MD tomorrow. The urinal does work, and I'm not sure that he would consent to just being incontinent purposely. (Although he sometimes is incontinent not on purpose.) A volunteer for respite won't work at this point, because of the toileting. The frequent urination goes back several years, and seems to be related to enlarged prostate. UTI is something we watch for--when he gets one, his urine gets very dark and foul-smelling, and mentally he gets so whacky he's really off the charts. I can have five days respite once a month, and while at first I couldn't imagine using that much respite, it is starting to seem like a very enticing benefit! : D We'll see how he does tonight. Today the aide gave him a good bed bath while I took a shower and went into the park across the road for a 20 minute walk. He started getting agitated after she left, so I got him up and dressed, sat him at the kitchen table for lunch, and brought him into his den, where he is asleep on the couch. I forgot about the full moon. It's not scientific, but boy, does that full moon bring on some whack-a-doodle behavior.
The increased dose of Haldol just made him worse. It was a wild night, as he yelled and was agitated for 5 and a half hours straight, not to mention the frequent urination. Today the aide gave him a shower and got him up, and he's been fine (i.e. pleasantly confused) all day. The MD called in Seroquel, and I will go pick it up at suppertime when my son-in-law will be here to watch him. Maybe I will get some sleep tonight. Cross your fingers. I've never been so tired that I was nauseated before. While the aide was here I was able to go to the bank for an important errand, but there was not enough time left for me to get a shower. I'll do that this evening, I guess, while s-i-l is here. Stay tuned.
Seroquel worked well. I gave him 25 mg. at 9pm, and he went off to sleep until around 11:30 pm, when I needed to help him with the urinal. He went back to sleep, and when he woke up needing the urinal around 1 am, I gave him another 25 mg. of Seroquel, since he can have it every four hours. Basically he slept well all night except for needing the urinal every couple hours as usual. No yelling, no agitation, no delusions, no hallucinations. The only thing that happened was when he woke up at 11:30, he said he "couldn't catch his breath" although I didn't see any signs of respiratory distress. So I used the oxygen on him for the first time--he wore the cannula with the concentrator going at 4 liters per minute for around a half hour. No more problems until around 10 am, when he tried to get up to urinate instead of calling me, and accidentally wet the sheet outside the new bed protector. Thank goodness my 8 new bed protectors came yesterday from Amazon. I just helped him with the urinal and then got him all back to bed and comfortable with another bed protector. Will change the bottom sheet when he gets up later.
Elizabeth, I use the waterproof pads also. Then I use the largest disposable pads under the sheet, one high in the bed and one low, overlapping. that way I only have to change the quilted mattress pad occasionally when he has a really wet bed. Of course my guy is in diapers and can't get up at all. It is a challenge to change all this stuff by myself but I have learned how from watching and helping the aides who come 5 days a week to bathe him. The sheet is already wet this am and its a long weekend but it may stay until Tuesday with a waterproof pad over it.
Good suggestion about putting the disposable pads under the sheet, Mary. I wish I had known that one day earlier. lol In terms of the Seroquel, last night I gave him a dose at 9 pm, and while he did not go off to sleep--he wanted to watch TV in bed, not that he knew what was going on--he was quiet and pleasant. He never got agitated, so I did not give him the 1 am dose. I was up several times with him to place the urinal and dump it, and am wondering if I had given him the second dose if he would have slept for longer periods between urinating. I think I will try that tonight. He took a fall, too, getting out of bed to "go to the bathroom" before I could get to him. But I was able to pull him up. He just does not remember that he can't transfer and ambulate by himself anymore.
ronnyd yes, I have experienced what you inquired about.
My husband is in a facility with a philosophy of no medication if possible which I really applaud. Even before my husband went into care he was hallucinating and had severe paranoia. The staff worked with him to try and divert him however things escalated to where he was often terrified at night e.g., seeing men murder me and hauling a heavy book case to barricade the door to his room.
In consultation with the geriatric psychiatrist, nurses, and myself, my husband was started on a low dose of respiridone. It has been like magic. The paranoia and hallucinations persist but much less explicit and my husband is much calmer. We have not noted any side effects and it has been 3 months now.
Like you I had huge concerns about anti-psychotic medication and as others have said here, I got to the place of really wanting enhanced quality of life for my husband. I can't imagine how horrific to live with those kinds of demons.
Elizabeth, I know you are a nurse so you may already have tried this. since my husband has become doubly incontinent (mostly urine) and he wets the bed and himself at night, I limit his fluid intake after 3-4 in the afternoon. It has helped a lot. Also, I insert a tranquility pad (quite thin) into his pull-ups at night to hold any extra urine. They work well when he doesn't yank the pad out. :>(
Hi LFL, and happy Memorial Day! Larry doesn't drink much to begin with, so limiting fluids is not an issue for him. He is seldom incontinent at night--knows he wants to get up and go to the bathroom--so I have to be hyper-vigilant that he doesn't try to get out of bed and fall. Last night again I gave him his Seroquel, so there was no agitation, delusions, etc.--but as usual he woke up every hour-and-a-half to two hours and I had to place the urinal for him. With all that, he was still incontinent one time, so I just replaced the bed pad with a clean one. He wears a brand of adult diaper called Prevail during the day (furnished by Hospice), but at night is "commando" under his hospital gown. Today his Hospice aide called at 8am and said she'd be over in 15 minutes or so. I jumped up and put on some clothes and made my bed, so she wouldn't know I'd been sound asleep. lol I appreciate the help beyond words, but wish there was a schedule…they just come whenever…no rhyme or reason. She gave him a shower, washed his hair, shaved him, got him dressed, and toileted him twice during that time; also made the bed, of course. It was heaven. Now he is up having eggs, toast, and coffee, and I am having coffee and feeling so groggy and hungover. (From lack of sleep.) There are no signs of urinary tract infection--all these bathroom runs seem to be prostate-related. He has had a couple UTI's over the years, and I know to watch for really strong, bad-smelling urine and a change in mental status to ditsiness beyond ditsiness…if you know what I mean. Dtr. and s-i-l are bringing us some groceries on their way to Memorial Day festivities--then will come back later in the day to make us ribs for dinner. I'm looking forward to it, but am glad they and the children will not be here for the whole day…it's just too much.The aide didn't stay long enough for me to get my walk, but I'll walk later when the family is here.
The one thing I'm worried about on the Seroquel is that he is starting to get really nasty. He has never…repeat, never…been like this before. This was never his personality, not before Alzheimers and never since he's had Alzheimers. Anybody else seeing nasty, mean personality changes related to Seroquel?
I never thought Seroquel made DH nasty and aggressive, The reason he was on it was because he was already nasty and aggressive. All the Seroquel did was put him to sleep for 4 or 5 hours and when he woke he was nasty as ever. Later the nuro put him on Abilify along with the Celexa. The Abilify is one of the super expensive drugs that no one can afford unless they have a really good priscription (sp) plan. Thank goodness we do. But it keeps him pretty calm. Or maybe he is calm is because he can't talk anymore.
No more nastiness since the last post, and he only woke up to urinate twice last night--so I had a lot more rest than usual. He did say to s-i-l that he is very afraid. Maybe that is where the uncharacteristic nastiness came from. Also he was aware and upset that his 84-year-old cousin--a former very good friend--had just died in Manhattan. DH's grief responses have always included a lot of anger, and, demented or not, he did understand and remember that his cousin was gone. He does like me to come to bed early when we give him his PM care and get him into bed. Last night I got into bed at 9pm with my portable DVD player and watched a movie while he went off to sleep in his bed. This might be a key--I can read or watch old TV series on Amazon Prime on my laptop in bed at night if it makes him happier and perhaps more secure. He just had the one dose of Seroquel 25 mg. again last night--did not need the second dose at 1 am.
Elizabeth, it might be a good idea not to tell him about someone dying. I found it best to not give him reasons to worry and tried to keep his life as peaceful as possible.
Bama, I know exactly what you mean, and that is usually what I do. But this loss was very significant, and I just felt it was not right to conceal it from him, dementia or not. If his sister dies, I will tell him for the same reason. (She is fine for now.) But anybody else, I would not tell him.