Happy Thanksgiving to all. We were supposed to spend the holiday at my mom's ALF (72, with atypical dementia, most similar to Lewy Body) but Wednesday evening I got the call she fell and her head was lacerated with bleeding that couldn't be stopped so they called an ambulance. Exactly 7 days prior she went to the ER for a fall where she hit the windowsill with her head.
I keep track of all her falls, and there have been dozens all year. After the ER trip at the end of Sept., we got her to agree to stay in a wheelchair "until we see her PCP." We saw him 3 weeks later in mid-late October, and he agreed, you have to stay in that wheelchair. Her legs have just gotten so weak that she can't even walk a few steps without falling. In early September she was using her walker still, but ditched it so often that after 3 or 4 weeks of falls, she started falling WITH the walker and now needs the wheelchair. So she's been wheelchair-exclusive for at least a month now.
The 3rd to last fall was from her trying to transfer to the couch from the wheelchair. Help was IN the room and she was too impatient for the girl to even get to her and she tipped in the wheelchair and hit her face and nose.
1 week ago she fell because for the first time, she suddenly forgot she needed the wheelchair and jumped up on impulse to look up a phone number, and fell backwards hitting her head on the window. Head and neck scans were fine so she went home. Now the fall on Wednesday was similar but more deliberate, and happened in the activities room during manicures. In between hands, the aide got a call and stepped out of the room for a minute, mom got impatient and stepped out of the wheelchair to get the polish herself and fell instantly. This was the head injury with laceration. Again, head and neck scans were normal and bleeding stopped without stitches, so we went home.
So we've gone from most falls damaging her knees, to falls hurting her knees and shoulders, to face, head, and now blood. What the hell do I do?!? I haven't had a good talk with the facility yet because of the holiday. I will definitely talk to them this week. She's only been on the AL floor for barely 3 months (this is a CCRC), so I don't even know what is going to happen. I know she was on a chair alarm when she stayed in rehab last summer, but do they usually do that in AL? The one time they forgot to hook the alarm up after a bathroom trip, she quickly got up, appreciating her freedom (I caught her on that one because I called her and could sense she was walking around). So with a seat belt she'd use any opportunity to get up.
Should someone like her stay in AL? Should she be in long-term nursing care? Memory care would be weird because she has very little Alzheimer's type memory loss. She is just extremely impulsive, lacking all judgement and reason. It is just so scary to wonder what is going to happen next.
I am so sorry your Mom keeps falling. It seems she still has some memory loss and behavior issues/judgment issues. These things are all part of dementia. Well, it is good that she is not that bad in memory loss but her behaviors show that she needs help because she doesn't have the right judgment and logic anymore. Maybe that is why she fell from the wheelchair because she thought she wanted to reach for something nearby.
It shows that she really needs more caregivers to be near her to help.
A memory unit is not just for bad memory loss. It is not necessarily the case. My late FIL used to be in this NH for dementia people only. There are 2 wings: one wing for mid-level to moderate level of memory loss, and the other wing is for severe stage like people who need to be fed and etc.
The only difference is this place is locked with the pad. My late FIL didn't care for the lock. Some new residents may play with the door trying to open it...
I am saying that your Mom may need memory unit. Memory unit or dementia unit is not exactly for memory loss only. Dementia has a bigger issue on the residents' behaviors and logic. It is not just memory loss. It is her decision making that needs attention. A dementia unit has the staff who understand dementia and the behaviors issues.
Such memory loss will get worse anyhow. There will be more people paying attention to this area. They know the residents have judgment issues so they will take care of that accordingly. The staff know not to argue with the residents and etc.
AL caregivers may have less attention because they assume the residents are somewhat independent and etc. They may not care if the residents behave strangely or illogically.
It is not just about memory loss. It is mostly the behavior issues that require such placement. Her decision making and etc. The worst fall will be the one around the hips. I am glad she is still Ok with her hips... I personally think she needs more attention. If you really don't like memory unit, try the skilled care for more attention. I think sometimes the demented persons should go between AL and skilled care, which is dementia unit. Skilled care is for sicker people. The dementia unit may not be only for people who forget a lot. The NH will decide if her memory level loss is bad enough for them or not. The dementia unit will have to decide if she needs to go there anyway.
Thanks so much, Nina. I know I will need to have another conference soon and I always like to give a lot of thought to the situation and gather information first. I'm wondering too if memory care might be something she needs.
I know how terribly demented she is, and have for a lonnnng time. The thing is, even to the staff at this excellent CCRC, it is not immediately evident what her limitations are. She also has major fluctuations. A few months ago she got a 28 on the MMSE, and 23 is more average for her. But she can barely follow a conversation. When she first moved to AL from IL after a 5 week stay in rehab from a fall, there was not the level of supervision I had hoped for. She presents herself in a certain way that really confuses people as to what she really needs. I had a couple of care conferences with them, and continued to give them information about her unexpected behaviors, and after a few more falls they have her on much closer watch. She gets help with all ADLs now too.
Since she doesn't have Alzheimer's, and I've never experienced her wandering, hallucinating, or being disoriented to person or place, I just haven't researched memory care in general, and know little about the section at her home. I like what you said about different sections. I just watched this documentary from PBS Independent Lens called "You're Looking at Me Like I Live Here and I Don't" and this woman lived in a unit where all the rooms were around a central common area, and with the nurses in the middle they could see everyone at once. At least, that's how it looked on video. I have no picture of what memory care or skilled nursing looks like in my head, unfortunately.
For the record, an excellent geriatrician, who specializes in treating and researching falls in the elderly, who has spent about 5 hours with us over 2 appointments, says she needs long-term care placement. I just wanted to give the AL thing a 6 month try... *sigh.*
The other issue is the personal caregiver. In the NH where my FIL was, there was some request for personal caregivers in late stage - a few hours per week to help out the demented persons. If this AL seems to be doing everything they can, then you can consider adding a personal caregiver who can come to help her out personally. Frankly, a demented person really needs someone near 24/7 but it is not possible in the NH. In the NH, there are a few caregivers for many residents in turns. If she has someone next to her regularly, maybe she will be less agitated and will be more stable and thus would not fall so much. Maybe she is just agitated so much that she falls a lot.
Try some part-time caregiver and see if she feels better. She may need companion.
I understand that she seems to be too good to be in memory unit and the professionals cannot tell what is wrong with her. So tricky! The demented person has 2 faces: one face is to the famiilar people/family, and the other face is to be polite/correct to strangers and etc.
I think a personal caregiver at this point may help. She can still stay in AL but needs someone to be there.
....."She is just extremely impulsive, lacking all judgement and reason."....
This is dementia. Yes, some have more short term memory loss than others but the first symptoms you should look for in determining if a loved one has dementia is exactly what you are describing. They can bluff their way through the memory loss but not the impulsiveness and lack of judgment. She is doing exactly what should be expected from one with dementia.
How many falls can one survive... all of them until the last one. My Dad was on the floor almost as much as he was standing up. They do not remember the walkers and off they go without them. They forget that they need to remain in the wheel chair and off they go. That is actually memory loss combined with the impulsiveness. It can happen in a flash. You can stand beside one all day and that moment you walk 2 feet away they are on the floor before you can turn around.
AL is not a place for someone that is a fall risk with dementia. They are not staffed adequately to keep a constant eye on someone. They are there to assist as needed not watch constantly. I am surprised that her facility hs not recommended a chair/bed alarm for her. Properly used they can warn the staff that she is trying to get up and they can reach her before she falls. It also creates a little tug on the back before the clip comes off which many times will cause Mom to sit back down.
You do need to check out dementia units. They are super staffed small AL units with keypads on the doors in case someone decides to wander. In order to get into a dementia unit you do need a diagnosis of some type of dementia... not just Alzheimer's. Because of the extra staff and central design of the units, most residents are within sight of a staff member at all times. Mom's unit looks identical to the AL unit except it is smaller with more staff. They can't guarantee she will not fall but my bet is, from experience, that the falls will be fewer and further between. Dementia units do not look like hospital type nursing homes and many residents adjust easier to the homey atmosphere. As my Mom deteriorated I opted to include Hospice in her care plan. They do go into AL and dementia units. Mom will not have to be moved. She has been in the dementia unit since the mid stages of her disease and will stay there.
Dementia units are not just to prevent wandering but to provide a care staff that is trained in managing dementia type behaviors and to have someone close by that can observe and keep them safe. In Mom's unit there are a few that are elopement risk. There are also those that are walker dependent and wheel chair bound. There is always at least one care manager chasing a resident down pushing their walker to them. They know if they put a wheel chair dependent resident of a comfee couch, they are less likely to try to get up. They know how to deal with outburst, paranoia, and impulsiveness. We have two with rather high MMSE scores. One is a gentleman who actually attempted to facilitate a hostile take over of the facility. Not the type you think but the financial type. He was soliciting partners who could invest in the venture. The other has decided she is responsible for the kitchen duties. She sets the table and clears the dishes.... and loves it! We also have two that are bedridden in the last days. There is every level between the two accounted for. So see what you can find in your area.
Yes, I am very pleased with the dementia unit. It satisfied my promise to Mom to never place her in a nursing home but gives her the security and safety she needs in her dementia
The demented person has 2 faces: one face is to the famiilar people/family, and the other face is to be polite/correct to strangers and etc.
I think a personal caregiver at this point may help. She can still stay in AL but needs someone to be there.
Thank you, Nina. In July we tried a part-time caregiver when she was still in a semi-Independent Living and within the first week she fell with them twice. It was a $27 an hour(!!!) service, and the people were so nice, but my mom was ready to fire them. Why? Because "I'm not paying someone to sit and watch me watch TV." She wants them to do housework... basically, the crazy OCD stuff she does when she's "healthy"... like rearrange all the books on the bookshelf 100 times. Before I could fully discuss with her the role of a caregiver, she ended up back in the hospital with the last fall, went to 5 weeks of rehab, and decided to move to AL instead of dealing with the whole caregiver thing. But I agree, it is definitely an option I am ready to pursue again. Perhaps now I can better match her with someone she enjoys more.
Honestly, what bugs me about the caregivers, and I mean ALL of them.. private, home care, assisted living, everyone... they don't know my mom like I do. And I know that sounds trite, but things they say can really F* things up in a way I know they don't intend. She still has her computer, and I have finally disabled every possible way she can find to shop with it. But I can remotely view her computer from mine at home. I used to do this to make sure she wasn't getting into trouble, and then it was just a small way to check on her. Wednesday morning I saw her struggling for over an hour to try to find a recipe for no-bake chocolate chip cookies. She has no stove, has a microwave, and isn't supposed to cook at all, but one of the girls told her about a recipe. When I heard she fell later that day, the first thing I pictured was her lying on the floor with melted chocolate all over her from the microwave. They don't know how suggestible she is with stuff like this. If someone mentions anything to her she feels she needs to do it, or buy it. Sometimes I hear things they say to her and I'm like ohhhh noooo do NOT put that thought in her head!! Now I have to undo it all!!
My mom is SO WEIRD. I bet we all think that, right? But seriously, mine is the weirdest!!
AL is not a place for someone that is a fall risk with dementia.
Thanks, Deb... and that quote probably says it all, as she is definitely both. There are prior posts of mine that describe my mom's dementia. Please don't mistake my minimizing of her short-term memory loss as denial of her dementia. She is SPECTACULARLY demented, and has had at least 3 full neuropsych work-ups since 2002. The last one was in 2010 and finally confirmed what I was suspecting for 10 years (why does it take SO long for this crap to properly show up on the tests??).
I just don't know how she continues to trick everyone, even the people she lives around. When we moved her to AL over the summer, everyone was telling her (myself included, to sugarcoat it all) that she could still come downstairs to her old floor anytime she wants, see all her "friends" and eat in their dining room. She was even promised by the IL social director who she was very chummy with that she'd still go on all the outings with them, in a wheelchair. And in 3 months, I think my mom has left the AL floor once, of her own accord. This has SHOCKED everyone there, they thought my mom was so vivacious and social, and they knew her for 2 years. Clearly, not enough time to learn my mom likes to hide from people the first chance she gets. She loves being on the 3rd floor... she can hide away upstairs all day "with the crazies" and then bemoan her "confinement" and when anyone suggests she venture downstairs she comes up with an excuse why she can't. Of course, they draw her out of her room with the AL activities, and she enjoys that stuff to an extent, but she feels more anonymous up there, where most of her neighbors are either sleeping half the time or have very severe memory loss which freaks my mom out.
ANYWAY, sorry for babbling. Deb, thank you very much for the insight you've given me into your mom's memory care unit. There is a part of the 3rd floor AL where my mom is called "Eva's House" which is the memory care unit. I've never seen it and have never had it suggested to us. They are also about to open the brand new building on campus they've been working on for 2 years which I believe is supposed to be more skilled-nursing and memory care, while they begin to reorganize the old rehab building. I don't know exactly how that whole plan is being fleshed out and how it may benefit my mom.
So I am going to request a care conference this week, and I will bring all these thoughts to the table. She had the bed and chair alarms when she was in rehab next door, so I do want to know if that is offered in AL. Just from what my mom told me while we were waiting in the ER, they had to mop up a lot of her blood from the activities room and the 2 other ladies in there got really scared. I can't imagine this is the sort of scene they want regularly in that unit. Thanks so much again for all the insight, it's really helped.
I know exactly what you are saying about your Mom. Sounds like a duplicate of what I went through with my Mom for years. I bet your Mom was a smart lady! They don't lose their intelligence. They may lose abilities but they will come up with a good explanation or isolate themselves if necessary. When they interact with others for a short time they are able to bluff their way through. They don't want to change and they will put up a fuss, but in reality they like the simple routine. It is less confusing to them.
That was my Mom. She fooled and faked her way through until her initial diagnosis was moderate to sever dementia consistent with Alzheimer's. She had fooled several doctors and many others by that time. Yep, she was a master at coming up with excuses and explanations! I suspected the problem, just couldn't get the consensus I needed to do anything about it.
As for doctor and the diagnosis.... WOW! Most general physicians and those that do not specialize in geriatrics do not have a clue what this disease is all about. It is a great failure of the medical community. They either pat you on the head and tell you that you are just getting old or they ignore the situation. If you press them to give a MMSE and it is low, they will say it is ok and prescribe aricept without a diagnosis. The ER visits are even worse. It is only when you get to someone with geriatric in the title that you usually get the diagnosis.
The other problem is that there is no sure fire test for dementia. It is a set of symptoms that can be caused by any number of medical problems. There are no physical symptoms. It doesn't hurt here. It doesn't show up in blood test. It doesn't have a lump or depression that can be seen. It is a brain disease. They will do a CT, which doesn't show dementia, and tell you that you are fine because you don't have a brain bleed or a brain tumor. Then they send you to a shrink that diagnoses psychiatric problems. You could have symptoms of several psychiatric problems... caused by the dementia.
I have stumbled through the system for almost 15 years with both Dad and Mom. It is not much better now than it was so many years ago. If you are informed enough to determine that there is a problem you and press for a diagnosis and find the right place for the diagnosis. What troubles me is all those that have no clue what is wrong with their loved one and don't know where to turn.
I will say that when I decided to move Mom and Dad here I was told they would "be just find in AL". I knew better. Mom especially needed the smaller space and structure of the dementia unit. Dad needed somebody to occupy Mom so she didn't drive him nutty. He was an elopement risk so to keep them together a dementia unit was necessary. It didn't take me long to realize that Mom needed it more than he did. I insisted and have never been sorry.
Nobody knows your Mom like you do. We do let our wishes get in the way of what we know. I did that when I let Mom and Dad stay at home for a year after her diagnosis. It is what they wanted and what I wanted... but definitely not what was needed. But I think you have to go through the steps to get to the point of being satisfied that you have tried everything possible. So trust your gut. If you think Mom needs the additional care of a smaller unit to help prevent the falls she is having then go for it. See if they have other solutions to offer. Investigate, check out the units, ask questions. Then follow your gut feeling