Hi all. I wrote a month ago about moving my mom to Assisted Living in her CCRC after multiple falls led to a 3-day hospital stay and then a 5 week rehab stay. We got her set up in her new 1 bedroom apartment and she's been discharged from rehab finally this week. We had already visited the new apartment with the PT for safety checks and maneuvering practice with her walker and all that. Everything went well.
So she spent the first 2.5 weeks in rehab on the wheelchair and bed alarms, because she falls nearly every day. Because of much progress made in PT and OT she was finally taken off the alarms and fell about 5 days later in the bathroom. Then she was back on the alarms. I called her the day before discharge and she sounded a little out of breath so I asked what she was doing. "Hold on, let me get my walker" was her answer. !!!!! NOT what I want to EVER hear! I asked if she was still on the alarms, and she whispered "yeah, but sometimes the girl forgets to hook me back up..." Oh, so you make sure you get up then.. and WITHOUT the walker, of course!
So anyway, I couldn't see her the day of discharge because I had an endoscopy and couldn't drive and was woozy, but I went the following morning. After 5 straight weeks of OT and PT every day, and such lovely therapists who taught her so much and trained her so well with the walker and all the promises again and again, the first thing I see when I walk in is her running from the bathroom across the bedroom and throwing herself down on the bed. The walker was in the bathroom, so I was like, "uh hi, guess I'll go uh, get your walker?" She said her knees were killing her because she'd been on her feet for a half hour looking for some old jigsaw puzzle that she doesn't even have anymore. I spent several hours there helping her get adjusted to how I organized her stuff in the new apartment, unpacking her bags from the Rehab, and a good 50% of the time she hobbled away from her walker. I got tired of scolding her, it was just pointless. I came home and told my husband, I don't think she'll last 24 hours without a fall. Sure enough, I got a call at 4am that night saying she fell, but she's "ok."
Her dysphagia has also gotten REALLY bad. It is getting really hard to understand her at certain times, especially on the phone. And we had lunch together and she was choking SO much. She had Speech/Swallowing therapy every day at the rehab at lunch, and I thought she was making progress, but she seems really bad now.
My mom will be 72 in a month, and I am scared she'll be in a wheelchair by Christmas, or choke to death before then. But everyone says she's doing great, that she's so much fun and they're happy to have her back home, yada yada. She said she showered last night unassisted with no falls, so that's good... but now I'm trying to predict if she'll make it through the weekend without a fall (and me having to rush to the ER again for the 5th time this year).
The following user gives a hug of support to Annieland: lostnalone (09-11-2012)
I am sorry - your Mom sounds like she is in late/severe stage given speech problem and eating issue and etc. I assume she has dementia. Also a memory unit may have better care for people with dementia because the staff know how to deal with the person with dementia. They may know better about how to keep her on the walker and etc.
My late FIL never had speech therapy or swallowing therapy. No way they can be cured. He only had pureed food or Ensure or babyfood when he had trouble swallowing. So give her pureed food so she would not choke as much. No way she can learn to swallow better.
You probably should realize that they only try to show her the best way out but it is not to treat or make it better. It won't be better. She won't learn from the therapy anymore.
My theory is the NH probably think she is in this stage for dementia and there is no point for treating or cure. So they go for the "happy" or "positive" talk with the family. Also the staff have to be positive on their daily job or they would feel miserable. For me I don't need it. I don't need the "lie" or "coverup" because I know she is sick due to the disease.
At this point it is comfort care that is important. If you try to treat or cure her, it is not realistic. Perhaps that is why the NH sometimes does not really go for aggressive treatments or attention. I am sure the doctor and nurses know how sick she is.
The thing is you may have to make sure the care is focused on her and not ignored.
If you always ask about it, they may pay more attention to the comfort care. The thing is they also have other patients so you need to fight for the attention. I believe the NH does not ignore patients intentionaly but it is human nature if you call more attention to it.
Annie, issues with speech and swallowing can be caused by a number of things and not necessarily relate to late stage dementia. Also each will lost an ability in their own time. It is not always the same pattern for all. Mom lost her ability to speak early. It has been about 3.5 years now and she was still walking around and connecting with life around her to some degree. She went through a period of what seemed to be choking but it was post nasal drip. Her inability to clear her throat seemed to show up at meal time. So please check with her doctor if this condition continues.
Thanks so much, Deb and Nina. Yes, mom has dementia, but they've never been sure exactly what type. Basically, she's one of the 100 or so types of dementia they probably haven't discovered or named yet. It's closest to Lewy Body, but she doesn't hallucinate at all. She does have REM Sleep Behavior Disorder which is related, though.
Her cognition fluctuates, which is part of the LBD, and she has Parkinsonian symptoms (but they only came on about 3 years ago). She doesn't have Alzheimer's type memory loss. She does have very slow recall, though. Her short term memory is good compared to other types of dementia. She just has enormous problems with judgement, reasoning, alertness, attention, impulsivity, and executive function. It makes it really hard for people to truly understand her limitations unless they spend a lot of time with her. She comes back from the Rehab, and see one of the caregivers who was helping her with her meds at Independent Living 5 weeks ago, and calls her by name and asks how her new son is doing, by NAME. I was like, wow.
Her speech started slurring a year and a half ago. Then it came and went, and was mild. Figured due to the "Parkinson's", but then later thought there could be some small strokes (vascular dementia component?? they don't know). This year we finally saw a good speech pathologist who evaluated her and prescribed some exercises and suggestions. Her speech and swallowing continued to decline, by my observations. Then while we were at the hospital we had the swallowing study done (at my insistence) and yes, she was diagnosed with SEVERE dysphagia. Every single swallow was being aspirated. EVERYTHING. So she went on purees. Through the hospital stay and the 5 weeks of rehab, they gradually upgraded her food. When I had lunch with her, it was the first time at the AL dining room for lunch for both of us. I figured they know about her eating issues, but maybe I need to be more assertive about it. I just don't know how much she is supposed to struggle, because as you guys said, and I know, we can't cure this.
The administrators always say she's doing great because they compare her to other residents, who are older, frail, depressed, or whatever. My mom is upbeat, chatty, well-groomed and relatively young. She is happy to partake in activities, make friends, and exercise when appropriate. But she is apt to fall every day, and is nearly incomprehensible. I talked to her on the phone today and I had to concentrate SO hard to understand her. AND she kept coughing and clearing her throat constantly. I just like, want to know if she's going to choke and drop dead or something. She's never had pneumonia.
No falls so far this weekend, knock-on-wood!!
Annie, thanks for the explanation of your Mom's dementia. She has a little of everything and all of none. The symptoms care contingent on what part of the brain is affected. I think when we get to the "all knowing" state related to dementia we will find out they all have something in common just progress differently. It has obviously progressed more into her speech and swallowing centers and less in her memory centers.... and is working it's way into her ambulatory center.
Is she on puree or at least mechanical soft at the AL facility? I can't imagine her not needing at least mechanical soft. Have you noticed her chocking more on liquids or foods. She may need her liquids thickened. It makes them easier to swallow and can be done simply with a product called "Thick-it". It also works with soup broth and other watery foods. Because of your Mom's lack of memory problems, you are right that they may think she is better than she is. I have said before that I want to change the concept of dementia as "memory loss" and substitute "brain damage" instead. In the beginning Mom was OK because her memory was ok... but all those other things you mentioned were totally out of whack! Her memory has since gone quickly to the point she has no idea who I am.
As for the aspiration, if she is aspirating every time she swallow I am truly surprised that she has not has aspiration pneumonia yet. Your Mom is one tough cookie It is rare that they "chock to death". The airway will clear though slowly. It is usually the pneumonia that is the major risk.
Knocking on wood for the no falls and counting it as a blessing. Dad would stay on his feet for a while and then fall twice in a day. About all you can do is hope for the best, be prepared for whatever comes your way, and count each day on her feet as a blessing.
I would definitely talk to the facility about the chair alarm not being used regularly and the food consistency. Make sure that both are written as a prescription from her doctor. That way the facility has to follow though. Mom has a prescription for mechanical soft diet. It's not puree but nothing she has to do a lot of chewing. Her meats are ground and veggies soft. She also has an prescription for a chair/bed alarm at all time including night time. And while we were at it I got the doctor to write her a prescription for chocolate ice cream daily... just because she likes it!
So make sure those two things are brought to the front and just see where life takes the two of you
Thanks again for your reply and insight, Deb. I should have clarified, that business about them forgetting the chair alarm was the day before she was discharged from the rehab. So instead of starting a whole thing over there when she was leaving in the morning, I called the social worker in charge of the AL who is familiar with us, and let her know what was going on. I said basically, mom is looking to break the rules the first chance she gets, and I won't be at AL tomorrow when she's coming in, so keep an eye on her as best as possible in the beginning.
She's in a Continuing Care facility with multiple levels of care. She went from a semi-independent apartment, to the rehab, and then back to a new full AL apartment. All are a 5 minute walk or short elevator ride from each other. So we're still getting used to this whole AL thing. I will indeed talk to them tomorrow about what the deal is with the food. I ate with her and it was not mechanically altered like she had at the rehab. At the care conference before her discharge, they told my aunt and I to meet at the wrong place, so we were a half hour late, and I missed the Speech Pathologist. I only got the notes later. So I really need to follow up, because right now I feel like I'm in the dark. However, she's getting Home Care right now, so I'm going to touch base with them tomorrow too.
Things are just bad right now. My mom is a shopaholic / very very organized hoarder. While my Aunt and I were moving her last month, naturally we had to downsize her for the umpteenth time. I also finally took away her credit card and checkbook, which was long overdue. We left her with a lovely, safe apartment, with everything she needs, her favorite things, sentimental items, and all that. But we didn't think she needed a box of 20 wallets, 30 cosmetic cases (all of this was downsized from the last move) and 22 dishtowels. So she calls me a couple of times for the past few days, asking where this is and where that is. I'm trying all different answers, most of them honest. I could sense her starting to get agitated last night, and I told her I'd talk to her tomorrow.
At 8:45pm, when I'm enjoying the last night with my 3 kids that isn't a school night, the phone rings and it's her. I just know it's going to be trouble, so I don't pick up. 20 minutes later my aunt (mom's sister) calls, and tells me she just got off the phone with my mother and she was HYSTERICAL. Screaming at the top of her lungs, full drama, she has no money, she's a pauper, she's STARVING and can't buy food, we took all her things, she needs a blender, a drainboard, more dishtowels, ETC. Mind you, THIS IS MY MOM'S NON-DEMENTED PERSONALITY. She even told my aunt that she had called me and knows I'm avoiding her. Then she made my aunt promise not to tell me what she did with all the raging. She knows FULL well that this behavior is wrong, but she doesn't care. That's ALWAYS how she's been. If she wants to rage and carry-on about however she feels wronged, she's going to do it, and to hell with how anyone else feels.
I haven't spoken to her in 24 hours now, and I did not want to visit her today with at least 1 kid as I had originally planned. I'm going to have to call her before the end of the day. I am just in no mood to be screamed at right now. My middle child is starting Kindergarten tomorrow AND my husband has his citizenship test! I have a busy and exiting week ahead of me and I have no desire to deal with her and her STUFF after spending half my summer on it.
The following user gives a hug of support to Annieland: aras (09-05-2012)
.........."That's ALWAYS how she's been. If she wants to rage and carry-on about however she feels wronged, she's going to do it, and to hell with how anyone else feels.".........
Ok so she doesn't care how you feel but you are going to send yourself on a guilt trip and feel badly because she's screaming. Let's think about this in a different way. She is losing her independence. She is losing her possessions. She is losing control. She is angry. She is uninhibited and doesn't mind throwing her rage out into the world. In a way she has every right to be angry and rage. If you were in her shoes you would be angry too
But she can't continue to have all that stuff. It only confuses her. She can't live the independent life that she has lived before. Her life is out of control because she has a brain disease that is damaging her ability to process her world in a rational way. So you have done exactly what you need to do for her. It may not be what she wants but it is exactly what she needs. Therefore you have no reason to feel badly or to internalize the rage she is throwing out into the world.
It may seem that she is directing that rage at you but she is truly raging against the world and this disease that has put her in this position. She is angry and upset and confused and anxious. The person that is right there in front of her is you! You are the one that is helping her but you are also the one that gets the full force of her angst.
By realizing that she needs to express this anger, it's not truly directed at you but at all that is going on in her life, it is a little easier to let it bounce off the shell that will eventually develop around you to protect you. It's not easy and it takes some practice but it is doable. Just remind yourself repeatedly that she has every right to be angry and needs to express that anger. That she is not raging at you but at the situation. Then you can replace the angst you feel with empathy.
I went through this with Mom. She was one angry camper for a while. She screamed and yelled about things and stuff. She acted out. But she had lost her home of 54 years, was in a place she didn't understand, had lost her independence and mobility, and most of her stuff. Add to that the paranoia the disease crates, the inability to comprehend, express, and remember. I let her rage. I empathized with her, I validated her emotions, and I gave her just enough hope. I also worked with a geriatric psychiatrist (in hospital) to find the right medications to calm her anxiety when it got out of control.
So don't think of it as Mom raging at you which will drive you further away from her but as you helping her through a bad time which will pull you closer to her even in the midst of the rate.
PS... yep and sometimes you just have to remove yourself from her line of fire to renew yourself and find what you need to go on. That is ok. She is cared for and will be ok. There are two people on this journey and you have to take care of BOTH.... you and her
The Following User Says Thank You to Gabriel For This Useful Post: Annieland (09-09-2012)
You should not take it personally about Mom's rage. Some of it is actually her childish calling for attention. Surely her personality is still intact but I think that was for attention. Don't be so mad about it. My late FIL also told his friend who called him telling her he was hungry and she didn't believe him. Why did he say it? I was there in the house as well and he just ate a very good meal. He was walking around happily when she called. So he told her he was hungry??? It was a cry for attention. I was not mad at him but I thought it was funny.
You see when Mom says things that are too far from the truth, it is only too funny to believe it so don't get too angry about it. Yes at times I got angry because my late FIL blamed us for not knowhing his own will and that kind of stuff. He also blamed me for not watering the plant's vine that was high up on the wall. When it came to nonsense, I just laughed about it.
You know what, last night I also realized that was the way my late FIL was about other things that I was angry about. Once I accept that it is just the way he was and the way my husband copes (co-dependence), I felt much more at peace. It is no one's fault. Yes at that time, something could have been done for certain issue (my late FIL thought he worked with my husband and my husband let it be) but it was not about faults.
You may need to stay away from Mom for a short while, but please don't be angry for a long time because she just wanted attention. Also Mom may not be in the reality anymore. In her own world, she got this logic that things were wrong. Please don't take it seriously. You are thinking she takes it literally in your reality and get emotional about it. She said it out of touch of the reality. One would never know what her reality is so don't go around guessing for something that was out of nowhere. Mom didn't understand what is going on.
One thing you may need to do is, beside from calming her down by distraction and comfort, make sure the family or friends or the authority understand that she is OK. You just moved her and controlled her finances due to her sickness. As long as people understand this, you don't have to worry about Mom's fuzz unless she is going to call 911.
Being angry with her gets you nowhere. She failed to understand why her wallets or stuff are gone. So she said you stole them or what. Make sure the aunt understands it is the disease. Maybe Mom will get used to the new place later on and forget about it.
Last edited by ninamarc; 09-04-2012 at 08:43 AM.
The Following User Says Thank You to ninamarc For This Useful Post: Annieland (09-09-2012)
Thanks once again, Nina and Deb. You were both right, and I dropped my little grudge pretty effortlessly within 24 hours. I guess part of it was I was so ****** that my aunt took the hit this time. But my aunt was actually happy to take it for once, knowing how much I usually deal with! But yeah, mom is angry at the world, and I totally get why. And I'm angry at the world a lot too . So it got to that point where we were going to clash.
So Monday and Tuesday I talked to her, but skipped seeing her until Wednesday, when I was to take her to her geriatric psychiatrist. It was more than halfway into the very pleasant session when suddenly she mentioned, "and my daughter DUMPED everything I own." So I tried very hard to play it cool and help everyone understand that Aunt Mary and I reduced mostly DUPLICATES of items, not everything she owned. Dr. asked how the shopping has been, and I said it's over. The tight control I put on it for the past 2.5 years was apparently not enough, and when it came time to downsize the job was overwhelming yet again. My mom found this whole idea terribly insulting, and she was getting steamed.
We had to wrap up with the psychiatrist, so we reminded mom that it is an adjustment period right now. I reminded her how she went through all of this same stuff, when she downsized from her BIG house to her old apartment. And then of course grew to love her apartment, and now it was just another smaller downsize. Just like she adjusted 2 years ago, she will adjust again. She calmed down and agreed, but still accused me of throwing out some beloved embroidered tablecloth of my grandmother's because I couldn't off the top of my head remember where it ended up.
When we got back to her apartment, first I found the table cloth, and asked her to please try not to accuse me of stuff and get unnecessarily upset before I can investigate and try to fix the situation. Then she handed me a bunch of magazine subscription renewal forms that "are all coming due!!!" like it was an emergency and she couldn't pay for them (!!!). I said "this one expires in January 2018, this one is December 2014, and this other one I'm not sure, I can look it up." She was dumbfounded. Then I remembered I forgot to clear some crazy stuff out of her fridge when we moved her. I got the idea to show her... 6 bottles of the same salad dressing, all in the fridge. Some used, some sealed, one with a spray top, one in the organic variety, one low fat. All Raspberry Walnut Vinaigrette. I put them all on the couch next to her and asked her which she wanted, they were all in the fridge. She said "Ken's" and I said "well, these 5 are Ken's." So we went through them, made our selections based on expiration and whatnot (I took an unopened one)... and she said "Wow, I really can't be trusted to shop for anything, huh." It was funny, and things got back to normal.
Unfortunately, when I came back on Friday to meet up with a Speech Pathologist I scheduled to have lunch with us to assess her need for a dysphagia diet at the AL, I found her with obvious bruises on her cheek and lip. And lots of makeup all over. I'm like ma, what the hell is all over your face?? "Ohh... you see that huh. Yeah, I fell a couple of times. I didn't tell anyone." Very upsetting. As if watching her struggle to chew and swallow her lunch with the therapist wasn't unsettling enough, to see her face all beat up like that without expecting it... I came home pretty upset. Then this morning, 2 days later, they call and say they found her on the floor, by a bookshelf, no walker. All of these falls are due to her still rummaging around her apartment, trying to look for things and rearrange things and do all that obsessive compulsive crap I've tried so hard to prevent. But there is no stopping it. If I leave her a lot of stuff, or take half of it away, it doesn't matter. She will build a nest from her mail and sort it into a dozen piles and folders. She hasn't even been out of the nursing home for 2 weeks and she's already had 4 or 5 falls, has bruises and cuts all over her face, and is choking at every meal.
Other than that, she's my same ol' pain in the *** mother .
Oh P.S., I did tell the staff immediately when I learned of the 2 falls. That's probably why they caught this morning's fall so quickly. Maybe the next one we'll prevent?
Annie... please do not expect your Mom to reason, rationalize, remember, and react as a normal person. She has brain damage. At best she is processing part of what she sees and hears. At best she understands a portion of what is explained or said around her. At best she remembers some of what she understands and some of what she confuses in her mind. What she does not understand, can not process, or does not remember is replaced with confabulation. The brain will try to make sense of the bits and pieces. What results is a very distorted reality. She may agree with you in the moment and not have a clue what you are trying to tell her (but it shuts you up) and later forgets what she agreed to.
I am a little amazed at the discussion at the geriatric psychiatrist office. Early in Mom's dementia there was a psychiatrist that tried "talk therapy" with Mom. What a HUGE joke that was! Refer back to paragraph one for the reason. Even though Mom was well into her dementia with a diagnosis of moderate to sever Alzheimer's, this psycho joker told us that we needed to respect Mom's wishes and leave her alone!! So she could catch the house on fire, break her arm, be charged with hit and run for leaving the scene of an accident, not to mention fight with Dad and have manic screaming fits in the yard. Yeah for the psycho joker! Discussing situations with someone with dementia is NOT going to be productive. It only frustrates and confuses them and makes you crazy.
The accusations are nothing more than her warped way of explaining what is going on in her life that she doesn't understand. Her things are gone and she is in a new place. She had nothing to do with that (in her mind) so you stole all her stuff, got rid of it, and left her destitute. We had the same type of "table cloth" episode. Mom flipped out because my sister stole her Christmas table cloth. In reality Mom was just angry because she was no longer in her home with her stuff. Even when we showed it to her... she was still angry as a spitting bull. Just proof to her that sister had actually stolen it.
Yes, they are compulsive and obsessive. The need for something sticks and they will buy it over and over... and there is not much you can do. The brain is stuck on that particular needs and since they don't remember having it, they buy it again. You Mom is stuck on the Raspberry Walnut Vinaigrette and my Mom was stuck on sugar free Jello Instant Pudding mix. We tried, but when we moved her out of her house there were cases of it in the house. I brought home enough that I have not bought any in the last... 6 years! Yes, I do use it but still have a large box full. Should I mentioned there were over 50 graham cracker pie crust? So 6 bottles of the same salad dressing is really not that bad
Been through the magazine subscription fiasco as well. The bills that were paid repeatedly or not at all were common. Mom would order things and forget it so she refused to pay for it. She actually order one computer service with a monthly charge on her credit card and it was never installed on her computer. And there were the monthly shipments of some beauty serum... cases of it that I have NO idea how much that cost! We talked until we were blue in the face and it only stopped when she no longer had telephone or computer access, no debit card, no credit card, and no way to go shopping! It is obsessive compulsive driven by poor judgement and no short term memory. She can not stop it.
Yes, they forget to tell us the important things like the fact that they fell. We still don't know how Mom broke her arm. Later in AL she fell and hit her head on the coffee table knocking herself out. Dad with his vascular dementia sat in the chair reading his paper. We have no idea how long she was there before a care giver came in and found her. Dad didn't know. By the evening Mom had no idea why her head hurt. You have to remember that they don't remember. Mom would assume if there was a bruise, she must have fallen but it was impossible to get details.
When you said ..... "There is no stopping it!"..... you said a mouth full and you need to remember that. You can not convince her to do anything different than she is doing. What you learn to do is work around it. I would take those subscriptions and assure Mom I would take care of them... then trash them before I left the building!! I left her with what she needed and nothing more. If she fussed I assured her I would check into it... tomorrow... and promptly forget about it. As long as all bills and important mail is sent to you, let her nest with her mail. I actually sent Mom junk mail to entertain her but all her important mail came to me! Mom plundered her stuff constantly and I let her. I did take away a few items every time I visited. Not enough to tip her off that anything was gone but enough so that over time there was less and less there. The dramatic clean outs are just that... dramatic.
So your Mom is normal for dementia. Please try to accept where she is in her disease journey. It is much less frustrating when you expect what you get. Next time make a game of rummaging with her. It can be fun to see what chaos she has created in her little nest!
I do hope they come up with a diet that works for her or a way to help her swallowing issues... when do you get a report back from the speech pathologist?
At some point we could talk to the demented person about certain things about her personal stuff. But sometimes it is met by deaf ears. My late FIL would not understand what we were talking about. Sometimes we ignored the sensitive issues and hoped that he didn't mention it again. We could explain it once about the stuff but we didn't really go back to show him where the stuff was. It seems your Mom is still very alert so she remembers everything that was moved. It sounds like my late FIL in 2005 when he was still not very sick and tried to handle his own stuff. I think what you explained to her may help her now but in the future as she forgets, it won't help too much. Sometimes it helps if you ignore her issue and don't try to solve it. e.g., the magazine issue. Don't have to tell her the exact expiration date as she would not remember.
Sometimes we ignored the issue because we wanted him to forget about it.
About salad dressing or the stuff in the fridge, she just forgot she had those things and kept buying. You don't have to remind her that she bought so many! Just pick one of them without checking with her. You are detailed about everything in her apt, but at some point, you have to just get the approximate...
About the fall, I am concerned that you need to hire some part-time caregiver to see to it. It is not good if she falls and breaks her hip. That is why I think a memory unit will be better so she would be watched more often.