I've been working on medication with the doctor for my lo ever since the disaster with Risperidone and her daycare trying to remove her. This is due to her constant pacing and verbalizing. Her favorite phrases are take me down, help me, take me home and where's____(whoever) over and over for hours. With the advice many of you have given, I give her 1/2 a seroquel in the a.m. before daycare and they give her an Ativan in the afternoon so she can ride the van home safely. I asked the nurse to explain to me again why these behaviors are disruptive when she's not beligerant or dangerous. LOL They said she yells at the others. I asked what are they saying or doing that makes her yell at them. They tell her to "shut up". I told her that seems like a normal reaction when someone tells you to shut up. I just laughed and said that it seems to me the people who say shut up should be withdrawn, not the person who can't help this stage of the disease!! In the meantime, I got her into a new daycare. When they gave her theTB test, she screamed and then tried to hit and kick the nurse. (I'd never seen that behavior.) We had a rough evening and night that day. She was up until 5:00 in the morning agitated and restless and the medication didn't seem to help get her to sleep. But, she has slept the last few nights. Now every day gets harder. I have trouble getting her dressed (or undressed). She won't let me take off her pants without a struggle, a major struggle. I've heard you call it the "death grip" and I thought I was stronger than she is (Ha!) She complains: she hurts, she's cold, stop that, you're hurting me. She won't sit at the table to eat. She takes a bite, then wanders, comes back, takes a bite. Aside from her repeated phrases, her words are not making sense. She thinks she's referring to something but it has no meaning. The words are more jumbled and nonsensical. She has had 2 night time wet accidents so far and 2 daytime wet accidents in the last few weeks. I have rewashable underwear with a built in pad until I can get her to wear Depends. She once told a home health care worker who tried to put her in Depends, "If you like these things so much, you wear them." These also help when she drips since she doesn't wipe herself anymore and won't let anyone help her. She's getting more and more disagreeable and difficult. Does this behavior just get worse and worse. What happens next? This is happening so fast. She was diagnosed 3 1/2 years ago and I see serious deterioration every week. In your experience what will be happening next? Has anyone else experienced such fast changes? I'm very worried about putting her on the new daycare van next week. Luckily, I will be able to pick her up a few days a week.
Wish I had some answers for you, but have no experience with this kind of behavior. Others will be along soon and they probably can help you and offer suggestions. Hang in there. I know this terrible condition can get very bad.
diatron, sometimes its a hit/miss with certain medications. the seraquel works for alot of folks as we see, but some dont tolerate it well, so keep an eye on her behaviour and see how she is reacting to it. most say here it takes a bit of time to work into the system to get the benefits of it. some can even get more aggitated with certain meds, so again watch and see. if her behaviours get worse instead of better after a while, maybe check back with the dr, there are alot of meds out there and something will finall click. its alot of stress to finally come up with one that works, ask any of us here who deal with aggitation and anxiety. if you havent already you may want to get the AZZO over the counter urine test strips to have on hand just in case to check her urine for urinary tract infections. when these guys get one the behaviors seem to follow what you describe. a sudden and dramatic change in their daily demeanor. if you can capture a clean urine specimen you just dip and follow instructions. if by chance it looks positive you call the dr and explain and they will make another test at office and prescribe antibiotics if necessary. but its a good indication if she could have one or not. lackof hygiene, dehydration, and a lot of other things can lead to uti. so its quite common. yes, i know all about the 'death grip'. it is quite amazing how much resistance a human can have with regards to holding their pants on. i have dealt with this phenomenon for years. it would probably be best if you can get her into depends sooner than later or at minimum add a light pad to her washable underwear and have them change them at daycare if possible. the wandering and lack of ability to sit still so many of us have dealt with the 'pacing' which leads them to be on a constant move. mine paced til he wore himself out literally hrs at a time, we would work up a sweat going round and round the house. its so sad. i hope you have success at the new daycare. it can be trying times when they get to these stages, and most of us have gone thru one or more times of what you are dealing with. best of luck. divvi
What's the dosage of seroquel you are giving her? 25 mgs, 50 mgs??? It might not be enough to control her agitation and pacing-I would consult with her dr regarding dosage. My DH was a pacer like divvi's-would go all day and all night until he was on the right combo of meds. It took the dr's at the psych hospital 3 months to get the right combo to settle him down. The psychiatrist told me that the pacing and constant agitation are precursers to aggression and therefore need to be controlled so the behaviors do not escalate. I see it as imporoving quality of life for both the person with AD and the caregiver(s).
Is the daycare she attended (or will be attending) one which is geared towards people with dementia and therefore the staff knows how to handle these situations or just a general daycare? The only daycare services near us is one which basically has elderly clients (mid 70's up) and is not specific to dementia. Because my husband does not fit the profile of the other clients, I have chosen not to put him in daycare because I am certain he will be disruptive and non compliant. Perhaps the new daycare will be better at understanding/handling your wife's needs. Good luck.
diatron, not that it's any help, but my hb wandered, wouldn't sit to eat: a bite and wander off; another bite, more wandering, etc., etc., etc. Death grip: yes. He is now in the memory wing of a care center and sits like everyone else to eat; still has the death grip aides tell me. He doesn't talk much, but a couple others repeatedly say "help," "I wanna go home," "I have to pee," etc., etc. Once after hearing the "I have to pee" being said a bazillion times, another resident said, "Well, go." Everyone seems to accept these "repeaters." Seems to me if a facility advertises itself as a day care for people w/dementias, staff should accept and work w/it. An excellent book I've recommended before and has been on the book recommendations here (can be purchased through Joan's Amazon link ;) )is Creating Moments of Joy by Jolene Brackey. She describes many strategies for working w/folks w/dementias - book is full of humor.
The underwear have built in pads that can be washed about 200 times. They are like depends, only they are cotton underwear. I have them in both moderate absorption (day) and heavy absorption (night) while she still wants "underwear". It made one less problem until she really needs the depends. The doctor gave her 25 mg. of seroquel because she had such a quick and debilitating reaction to Risperidol. She's only been on the Seroquel for about 5 days. The daycare she has been attending for over a year clearly says in their brochure that it is the only facility in the area that offers services to people with moderate to severe dementia. That was fine until she started constantly talking and pacing. They say she is disruptive when what they mean is that she is really annoying to their staff at this relatively small daycare. I can understand, it is annoying but that's their job and her symptoms are part of the disease. She is also overly attached to the nurse and wants to be with her and follow her around. The nurse is really the only "professional" at this daycare and I was happy with the daycare until they wanted her out. She's never, hit or hurt or tried to hurt anyone at the old daycare. The only thing she's done physically is pull away strongly and say don't touch me or you're hurting me. The new daycare is further, more expensive, bigger and has more staff. I was clear about the pacing and vocalizing. They had no problem with those behaviors and let her pace and wander when we were visiting. When I talked about how she used to try to undo the seatbelt (before medication), they told me that wouldn't be a problem with them because they have seatbelt covers. I made them very aware of her behavior before I filled out the paperwork and they were great. They said there is plenty of room to pace and plenty of help and activities to try to redirect her. (Good luck with that!) I'm going to keep her at the first daycare 2 days a week and try the new daycare 3 days a week. I can see how things go and make further decisions after I see how she reacts.
It's good if they will respect her behaviors. You might find she's more confused with attending two different day cares, but if it works for you and her, that's what counts and is the bottom line in "our business."
Zibby, I agree that 5 consistent days are better but I don't want to "burn my bridges" (I think that's the expression.) until I see how it goes. And she has that connection with the nurse that I don't want to break yet. Hopefully, then I will move her to 5 days at the new daycare. I'm just afraid to break the connection yet.
Diatron--Re the fast changes: there seems to be a pattern in some dementia patients to have a period of sharp drops in functioning and new behavioral issues surface and then a plateau at that stage for a while. If there's no physical reason for all these new symptoms, as Divvi suggested, (UTI, etc.) it could be she is transitioning to a new stage of the disease. If so, I am wondering if this is a good time to try out a new daycare? Dementia patients do best with a familiar routine. Would the old daycare allow you to keep her in attendance until the meds are sorted out? It does take some time for new meds to get into the system and to determine new dosages.
I believe I remember reading on the Bigtree Murphy site that most of the people that are "dismissed" from daycare are transitioning from one stage to another and thus, had difficult behavioral issues. She has a great discussion on the types of daycare setups in general.
My husband has paced for years--he has done agitated pacing in the past; and now that his meds are good and the disease has advanced, he still paces but seems content. It is a symptom of the disease--I heard a famous AD doc say the motivation may be to find something that is familiar to them.
Marilynin, the old daycare is not willing to allow her to pace or to constantly vocalize. They are only letting her continue because I have insisted they let me try new medications. On these new medications, she is better, however she still vocalizes and paces. They are not willing to tolerate it even though she is not hurting herself or others. They prefer the other dementia patients who do not speak, who sit down with their head hanging over and who are either very different or very medicated. They have a staff of 3 and a driver and they really want her gone. They don't care whether she's transitioning or not, they want her quiet and still....not going to happen. Of course this is not a good time to transfer nor do I want that. If you feel that I do you are wrong.....the current daycare was consistent, less expensive, good timing, transportation, easy. I'm worried enough as it is, I'm tired of them calling me constantly no matter where I am or what I'm doing and finding constant messages on the answering machines or my cell, etc. I'm nervous they're going to exclude her and....... I've found an alternative that I can try. I've gone to a lot of work to find another place that can meet her needs and I'm just doing the best I can for her and to survive this myself. I've spent weeks working on getting her in to this new place and they will care for her with the least medication possible to keep them functioning. I know I did the right thing instead of waiting for the axe to fall!!! I think I was proactive by doing research, reviewing options and not waiting to be without a plan!!!! I have her all afternoon and evening and on weekends. I needed something reliable.
Diatron--Believe me, I understand the bind you are in. My husband was kicked out of one daycare program without warning and I had to hire in-home aides until I could find another center that I thought would work--and it did. I'm sure you did your homework and that the new center will work with you on ironing out any issues, if they occur. Good luck!
Diatron, I am so sorry you have to experience this but it seems to me the sooner you can make the smooth transistion to the other daycare, the better for both of you, even though it is farter and more expensive. What I noticed when evaluating memory care centers to place my husband, many of them had residents who had "aged in place" and were older and further along in their disease, not necessarily "drugged". Many people with dementia in the late mid to early late stages begin to hang their heads as part of the disease-not due to medication. I made the decision to keep DH home because he was not as far along in the disease as others in the care facilities and would only create problems for me and the staff.
You are doing a great job in finding a good place where she will be well cared for and her dementia behaviors will be understood and tolerated. Good luck.