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Medical Forum / Diseases and Disorders / Alzheimer's / August 2006My truly horrific weekend
The last few days have been, without a doubt, the most difficult, most heart-wrenching, most painful of my entire life. My sister called early Saturday afternoon, panicked at the notion of having to get Mom into the lockdown facility by herself. I told her to hang on, I'd catch a plane and be there that night. I caught a plane at 5:30 Saturday, got into CA at about 10 local time. Kim and Mom were at the airport; Kim looked like she'd seen a nuclear blast, Mom was just thrilled to see me -- weren't we going to have such a nice time together? I felt like Judas. We got back to Kim's, had a glass of wine, then Mom retreated to the guest room. Kim explained Mom had been spending a lot of time in her room with the door shut, because she was protecting her cat -- she was sure that Jay (my BIL) wanted to kill it. All of Mom's distrust of John had been transferred to Jay. Indeed, Kim told me that the day before, Mom had come out of the shower, to where Kim was sitting at her computer in the home office. Mom said, "You're the most wonderful, marvelous person I've ever known!" Kim said, "I love you too, Mom, always will." Mom burst into tears. Kim said, "What's wrong?" Mom replied, "I just can't bear knowing that some day he's going to murder you in your bed." Kim and Jay had managed to install deadbolts on all the doors but the back door, which opens on their fenced back yard; they'd put padlocks on the gates. Jay left me a note explaining to use the back door in case of fire; he didn't want to say it in front of Mom. The next morning we got up, had a good breakfast, and headed out -- we didn't take Mom's stuff, because if she'd known where we were going, she wouldn't have gone. She thought we were going to Dad's and she was going to live with him again. (We didn't tell her that, she made it up all on her own.) She came inside with us willingly enough, and we explained (not entirely untruthfully) that this place had a program like the Alzheimer's daycare she's been going to. There were a half a dozen residents hanging out in the sitting area in the lobby, and we chatted with them while Kim did the paperwork and checked Mom in. Then we told Mom we had to go run errands (also not completely a lie) and left her there. I wanted to die. We waited a couple of hours, went to Target to get some stuff Mom would need, then took her suitcases and one *seriously* pissed off cat and dropped them off without going inside. We then had some lunch, and went to see my Dad. Spent a couple of hours cleaning and tidying his apartment -- he's really too frail to do it himself -- and stopped in to see his lovely, lovely neighbor Lee, who helps Dad a lot, before we headed out. While we were at Lee's, the facilty called. Mom had gotten out already, and was absolutely refusing to go back inside. They wanted us to come talk her back in. I thought I would puke right there, my gut hurt so bad. I was shaking all over. There was *no way* we could see going over there as a good idea. Mom would be sure that we were there to pick her up, and would only be even *MORE* upset when we said "No, you're staying, and we're going." Oh, it would have been a horror, not just for us, but for Mom. My BIL, who has worked in child care centers most of his adult life, called the owner (who was the one who thought we should come talk mom back in) and started talking California social services law. What he said, without saying the words, was, "You have a license as a lockdown facility, and you *need to handle this* -- or we're going to own your nice new building." Luke apparently took this to heart, because he called back in less than five minutes to tell us Mom was back inside. But I'm *very* concerned that Mom managed to get out a few hours after we left her there. My sister had told them *repeatedly* that Mom would wander, that she'd try to get out, that they had to be on guard for it, but she got out the front door while they were bringing in furniture. The facility is brand new -- it has 130 rooms and only about 15 residents so far. But it looks very nice, the rooms are spacious, the public areas are pretty and clean. The staff I met seemed kind and concerned, and apparently the director has been pretty successful at talking Mom down when she gets agitated -- which is every few hours. I do have a question for those of you with more experience than I: The facility (Colwood Terrace) has a little living room type sitting area in the front lobby, just inside the doors. The residents appear to hang out there a lot. That's why mom was in the lobby when the furniture was coming in, and could get out. Am I right to question the wisdom of a lockdown facility having the residents hang out by the door? Mom saw a psychiatrist yesterday, and apparently they have her on antipsychotics and anxiolytics, so we're praying that helps. As it stands, the nice director lady has taken Mom's cat, because Mom kept putting the poor thing in her purse or suitcase and trying to get out the door. Once she even apparently had poor Winnie by the tail. That cat has to be *thoroughly* freaked out. So unfair. (By the way, Winnie-who-was-not-Winnie is now not even the cat that came in through Mom's crawl space when Winnie disappeared. She's now a cat that Mom found behind Kim's garage. Who knows who she'll be next week.) We are agreed that if Mom gets out again, we'll have to consider moving her. Which will only compound the nightmare, but there it is. At least I got 10 hours of sleep last night. I'm taking today off; I hope to be settled enough in my mind to work by tomorrow. Dana My MIL was in a locked AD ward that was an entire floor of a larger seniors facility. The residents all wore wander guard bracelets that set off alarms if they got out. There were key pads on all doors AND the elevators (i.e. you couldn't open the doors to stairwells, or operate the elevators without keying in the codes), and also on ALL exterior doors (that also had the wanderguard alarms on them), including the fenced, escape proof garden area off the dining hall. There were also signs on all doors of the locked war reminding visitors NOT to let anyone off the floor (i.e. some lovely old lady trying to squeeze past and go out with them who may seem entirely normal but not be quite in her right mind). Residents in the locked ward had their own sitting area within the lockdown. Other building residents could sit in the lobby - NOT the lockdown patients. There was also a reception desk by the exterior doors that was manned 24/7, by reception staff during the day and security staff at night. At the desk, there was a bulletin board with photos of all residents who were a wander risk, just in case they managed to make it to the lobby, so staff could identify them (vs. the residents of the building who were well and able to come and go as they pleased). Residents who were a wander risk or agitated took meals on the locked ward (my MIL ate on the ward because the noise and bustle of the dining hall was too upsetting and distracting, and she didn't eat much there - she did better staying put). Residents who were better were escorted to the dining hall, carefully monitored and escorted back. I have also heard of locked wards where particular escape artists are put in bright coloured t-shirts (i.e. bright orange) so that all staff know they are of particular wander risk and can watch for them. I'd read this place the riot act. She MUST not get out. There was a particularly tragic case in Toronto a few years back with a gentleman who had just been admitted to a locked AD ward. He had not yet been fitted with the wanderguard, but he was wearing a special t-shirt to indicate he was a new resident so staff would recognize him. He managed to get out the door with visitors who were leaving and didn't know better. Sadly, the facility was near a large ravine system with trails and parks, and it was winter. He was dead of cold and exposure by the time he was found. Mary G. > My MIL was in a locked AD ward that was an entire floor of a larger > seniors facility. The residents all wore wander guard bracelets that [quoted text clipped - 36 lines] > and parks, and it was winter. He was dead of cold and exposure by the > time he was found. That's the kind of place we need. I spoke to the director today, and I don't know where the missed communucation was, or if my sister's clue phone didn't ring long or loud enough or what, but she told us that if they'd known Mom was as advanced and as delusional as she is, they wouldn't have taken her. I explained that Mom had gone *sharply* downhill since early July, which is so. She also told me Mom didn't actually get all the way out, she got between the double front doors, which is a bit more reassuring. Anyway, they've got Mom on 5 mgs of Zyprexa, and they're giving it a week to ten days to see if they can calm Mom down and stop the delusions and hallucinations. If not, we're going to have to move her. Dana >> My MIL was in a locked AD ward that was an entire floor of a larger >> seniors facility. The residents all wore wander guard bracelets that [quoted text clipped - 52 lines] > > Dana Hi Dana, You poor thing, I can imagine how upsetting this whole scenario has been! I deeply sympathize as I know how we felt when we first took my mother in law here to live with us. We had NO idea just how confused she was. We did eventually get her settled down and she lived her for about 3 1/2 years before we finally placed her in a professional facility not too far from our house. Needless to say there were some very rough spots throughout. Anyway we placed my MIL in a place similar to what Mary described. Besides having an alzheimer wing, they were a rehabilitation facility and did a brisk business rehabbing people from various illnesses and surgeries, joint replacement etc. They had a special wing just for the alzheimer patients, which had alarms on the doors. They had their own dining hall and sitting areas within the locked unit. Patients who were mentally capable of it were NOT in the locked down unit, and had other areas where they lived, and also were able to go to the lobby or even outside for walks or to sit on the nice benches outside in the fresh air with their visitors, if they wanted. Alzheimer patients were gently but firmly guided back if they tried to go out of the secure area alone. All the nurses and aides were experienced and were very skillful in their handling of the patients in the unit. The place you described sounds like they are more of an assisted living, rather than a place for alzheimer patients. Everyone in the business of caregiving seems to know that people with alzheimers disease can be very confused about where they are and why, and that they can and often will try and go out on their own to find their way "home" ..... which could be someplace that no longer even exists. As Mary mentioned, this can turn tragic if they aren't watched closely. I am amazed this place even considers taking alzheimer patients if they haven't got a clue about how they (all too often) act. If I were you I would inquire what exactly they do with patients who do not settle down and adapt to the surroundings. If they kick them out, that is not a good thing. When we placed my MIL, we didn't want her to have to move again. We specifically wanted a place she could stay for the duration, how ever long that turned out to be. Alzheimer's patients do NOT like change. They thrive on routine and that is quite understandable, if you realize how bad their memory is. The little bit they manage to retain in the way of familiarity of routine, becomes doubly important. I am so glad that you are able to come here to post, because this whole thing must be difficult new territory for you and your sister as well. I hope the medication helps and your mom adapts to her new surroundings. I also hope your sister and you can finally get some peace of mind knowing she is in a safe place. I remember when we first placed my mother in law. We were exhausted, but still used to sleeping "with one eye open," as they say. It took a long time for us to finally relax and realize we weren't on call anymore in the night.  SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > Anyway, they've got Mom on 5 mgs of Zyprexa, and they're giving it a week > to ten days to see if they can calm Mom down and stop the delusions and > hallucinations. If not, we're going to have to move her. > > Dana Dana, can they not suggest a suitable place in the vicinity? SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com It just blows me away that any place that would present itself as a secure dementia unit would not be fully prepared for the range of typical behaviours that dementia causes. There is a lot of good information about designing facilities for dementia patients - so there is no excuse for not realizing your facility isn't sufficiently secure, or is designed such that it will create problems. Heck, one of us could do a walk around and point out the lobby issue, and I'm not a designer. I've read lots of articles about best practice design for dementia (such as avoiding dead end hallways where people get "stuck", no contrasting colours on the floor that get seen as holes, etc. etc.) There is also (in my opinion) no excuse for knowingly accepting patients in mid AD and then kicking them out for entirely, entirely "normal" behaviours and disabilities of mid dementia. I can relate to not being able to keep someone physically violent who can't be successfully calmed down in a unit full of frail elderly, but we've all seen people on this forum whose relatives have been kicked out for every day dementia issues. What galls me is that you'd think the facilities would EXPECT those behaviours, since problem behaviours and disabilities are almost always the reason why someone gets placed in a facility - they are beyond the stage where they can be reasonably and safely be maintained in a home environment without herculean efforts. It ain't rocket science to figure out that people with dementia wander or get agitated. M >>Anyway, they've got Mom on 5 mgs of Zyprexa, and they're giving it a week >>to ten days to see if they can calm Mom down and stop the delusions and [quoted text clipped - 5 lines] > > can they not suggest a suitable place in the vicinity? They sent her by ambulance to a mental institution last night, to be held for at least 72 hours for evaluation. They're hoping they'll discover some bad drug interaction that accounts for the sudden deterioration in her condition, and especially the delusions and paranoia. It does seem to me that Mom got noticably worse after they put her on Zoloft -- she became more cheerful, but she also started to want to do things, and to be more and more insistant that she was fine, there was nothing wrong with her. It was when my brother staunchly refused to give her back her car keys that she really started to get paranoid, since she was sure there was no good reason for it. Anyway, I hope they find *something*. The idea that Mom will be this scared and panicky forever makes me want to -- I dunno, develop a major Xanax habit or something. But my family's got enough worries. It's not my turn to fall apart. Dana > But my family's got enough worries. It's not > my turn to fall apart. > > Dana Whoa, Dana, that last remark took the breath right out of me...do I *ever* understand! Go ahead and get as much out as you feel safe in releasing here. It's a safety valve that can really help you hold on. There's almost unfailingly someone here who's been there, done that. What a summer you've had! Deborah >> But my family's got enough worries. It's not >>my turn to fall apart. [quoted text clipped - 8 lines] > > What a summer you've had! I can't even go away camping for a week or something. I've got a sick dog, too. I've had better years. Dana > >> But my family's got enough worries. It's not > >>my turn to fall apart. > >> > >>Dana Dana - I understand. I've felt the same way this summer. As someone on this list recently wrote, " I don't think I've ever experienced anything as painful as taking my mother to an Alzheimer's home and tricking her into staying there against her will." I agree - although for me it was my dad, not my mom. I, too, have felt 'on the verge' of losing it - but knowing that too many people are depending on me and if I lose it they have no one. I've moved to a new city 100 miles away and am starting a new job as a professor at a small women's college next week! I'm not nearly prepared as my whole summer has been consumed with first helping mom cope with dad at home, then arranging for an evaluation, a two-week stay for him in a psych ward, and subsequent placement in a wonderful care facility. It has been draining to say the least. Prepping three new college courses looks like a walk in the park compared to what I've dealt with all summer! My dad has been in the nursing home for about a month - he is adjusting nicely, his meds seem to be working for him (Zyprexa - greatly reduces his agitation, although still lots of delusions and paranoia). He still wants me to take him home every time I go to visit, sometimes dumping his clothes from his dresser drawers on the floor and trying to pack his bag. :( That makes it very hard to want to go and visit. Dana, I feel the anguish in your postings and my heart goes out to you. Hopefully this group will provide you with some of the support you need to keep going. Speaking from recent experience, I can assure you that things will calm down once you get your mom in the right place and they get her meds adjusted. Until then, it is a bumpy ride and you have my sympathy, empathy, and positive thoughts for you and your family! Will you accept a hug from a fellow sojourner? If so, consider yourself hugged. Karla > My dad has been in the nursing home for about a month - he is adjusting > nicely, his meds seem to be working for him (Zyprexa - greatly reduces > his agitation, although still lots of delusions and paranoia). He still > wants me to take him home every time I go to visit, sometimes dumping > his clothes from his dresser drawers on the floor and trying to pack > his bag. :( That makes it very hard to want to go and visit. many faclities suggest limiting visits for the first several months so that the patient calms down and begins to consider the facility the normal place to be. > Am I right to question the wisdom of a > lockdown facility having the residents hang out by the door? Yes. I'm sure the architect thought that it would be wonderful for the residents to have a meet-&-greet area where they could meet visitors, but I'm equally certain that the architect had never lived with a demented person! If this is a new facility they need to fix it NOW before they get any more residents in place --- they need to make some other place AWAY from the door be the gathering place! Dana, I feel your anguish. Don't give up on the Zyprexa. As others have stated, it made a tremendous difference in our being able to manage my MIL at home for another 8 mos. And it worked fairly quickly. I could see my MIL try to mount a verbal defense to something, and she would start---but then just kind of stop in her tracks as she lost track of what she wanted to argue against. It didn't eliminate all of her resistance, but it sure made it easier for us to distract her and manage her care for our sanity. I would be concerned that the dosage might not be adequately regulated in that short of time frame--either too much or too little. But time will tell. Also I would bet that your mother's experience will cause this "new" facility to reassess their admission criteria. If it truly is a locked facility--her behavior could be predicted. My MIL is in a dementia-specific ALF(East Coast) and those with violent behavior that endangers others are promptly transferred to inpatient psych wards to get medications regulated and then usually return. Others are "managed" with frequent pow wows and some meds if necessary. At any rate a requirement of admission is an interview with the nurse. We were able to bring my MIL in "for a visit" and the nurse was able to confirm that she was appropriate for the facility. They work with the family and do go out in the community to do the assessment if needed. Otherwise, they get themselves stuck with folks they're not equipped to handle-mostly in the medical realm. Not of concern for you in your crisis, but it could have saved you much anguish. Hoping it works out for all of you. Beth > The last few days have been, without a doubt, the most difficult, most heart-wrenching, > most painful of my entire life. Ain't it the truth. I don't think I've ever experienced anything as painful as taking my mother to an Alzheimer's home and tricking her into staying there against her will. In my case too, my Mom escaped the place we put her in and the facility refused to keep her. They forced us to take her out. It was clear that they were running a business and we didn't fit into their business plan. They made it very clear that Mom was our problem, not theirs, and they didn't really care what happened to her as long as we took her away. They made me feel like I had brought a wrecked car to a used car lot and told me, "Get this old piece of junk out of here." They were more polite than that, but no less firm. Unfortunately, my Dad and I didn't have someone with your brother-in-law's experience to advise us. My first piece of advice is, the pain you've been through is truly horrible, but you did the right thing, really the only thing, that you can do for your Mom. All of us can testify that, when push comes to shove, there is nothing else you can do. You did what had to be done. We've all been there and none of us have found any way to avoid this. My second piece of advice is that everybody needs to try things for much more than one night before making a decision about the future. Your Mom's response to this new home are going to be very negative for a while. It may take a few weeks to adjust. Even after months, she may not like living there and want to come home - though she'll have only a hazy idea of what home is and may not completely recognize it once she's been away for a few weeks. But her behavior is likely to change. Her opposition will be more manageable. If they are good, the staff will get to know her better and be able to manage her more effectively. If the director of the facility still wants you to take your Mom out, I would propose the following to her: 1. Keep your Mom for at least one month to see if she settles in successfully. 2. If the director still feels at the end of that time that she cannot handle your Mom, then she should give you another month to find another place and move her. Hopefully, she will see the reasonableness of this proposal and not fight it. You didn't force her to accept your Mom. She voluntarily entered into this relationship just as you did. She has some moral obligation to your Mom and to you. Running an Alzheimer's home is not like running a used car lot. Before the end of a month, your sister or brother-in-law may be able to visit the place and get a good idea of whether they're doing a good job or not, and the family might want to move your Mom even if the facility has accepted her. But it takes time to find any of this out and decisions made in haste by anyone are not in your Mom's interest. Best of luck. Alan |
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