So Mom was in the rehab (vs. long-term) section of a SNF; I had been told she could stay as long as she participated in therapy. Well, of course she started yelling out at night and otherwise "misbehaving" (she has frontal lobe damage from a head injury incurred a couple of years ago; this superimposed on a pre-existing vascular dementia); in short, she wants what she wants when she wants it -- same goes for what she DOESN'T want -- and lets it be known in a very LOUD voice. She can be demanding and even insulting but, again, it's not her previous personality; it's the brain injury talking. Naturally, she neither understood nor felt inclined to participate in therapy where, among other things, they stuck painful ELECTRODES all over her (!)... At night, she's used to calling for me if she needs something, so that's what she did and, if I didn't respond, she KEPT calling all night ("preservation")...
Soon enough, predictable, other rehabbers began complaining that she was disturbing their sleep, and finally the director of nursing confronted me with anger: "Your mother's behavior at night is UNMANAGEABLE! She is causing other residents to become psychotic from sleep deprivation!" As if this were my fault??? Well, if she's sitting in a wet or dirty diaper because they aren't checking/changing her throughout the night, yuh, she's gonna yell for me???
At any rate, they soon enough cut her off all therapy, even though she was actually making great strides assisting with transfers and walking w/ walker. So no more Medicare free days, we were told! Great, I thought, because I never wanted her in there in the first place (left her there because she WAS so very sick at first and to appease the brother who both liked it there AND liked the fact that it was "free." So there we were, preparing for discharge, when a random social worker pointed out that we were in fact "skillable" for the entire 100 days (Medicare plus supplemental) due to the Mom's PEG tube.
Well, that was the "new wrinkle"; I was actually considering using those up...
That put the fear of dog in them!!! ZOOM, she was moved way down the hall to the opposite wing where they keep the crazies (or "behaviors," as they refer to them). There we found ourselves, far away from all the nurses and aides we had gotten to know over the course of six weeks, and the caliber of staff in "the crazy wing" was nowhere near as high, albeit standards there are low all over (only a three-star NH out of a possible five). The "crazies" crying, screaming, moaning, banging, clapping, and even entering our room scared the bejeebers out of BOTH Mom and me, so I objected. "It's that wing or you go home," we were told. So, over the objections of brother, we left.
Now here we are at home. YES, Mom is much calmer and peaceful! No more agitation (the bells and beeps were driving her crazy, even in the rehab wing). But NOW we're informed that home health will end NEXT WEEK; the referring physician at the NH ordered a skant TWO WEEKS for this fragile, ill 93-year-old new to tube feeding!!! Brother is mad, so he barely visits; he could spend seven hours a day at the rehab, flirting with the nurses and therapists, but can't stay even an hour a day in Mom's own home: no "glory."
So I'm a leetle skeered!!! We will be up a creek without a paddle if we can't at least have a doctor and/or nurse on call; any number of things could go wrong, and Mom is greatly missing the "good talks" she once had w/ brother. So skeered was I initially that I even allowed brother to ask if Mom could return; he was told "only if you become GUARDIAN; we can't have your sister 'interfering' with your mother's care." Um, that "interferance" including detecting that they were giving her 2,368 ml fluid each day when her cardiologist had restricted her to 1500-1700! No, can't have that going on.
So I soldier on, trying to do it all and hiring halfway decent caregivers so that I can continue working at least PART of the day (have a full-time job; I remind you that brother, his wife, and his two grown daughters do not work). Also that Mom has been "banned" from the better SNFs in the area due to her unruly behavior (she at one time had to be restrained from pulling out tubes).
When you're kicked out of a three-star nursing home, I guess you KNOW you're bad!
That's all the news that's fit to print; just wanted to give you all an update.
The following user gives a hug of support to all4mom: ninamarc (06-14-2012)
Does she has a primary physician? If so he can order the home health that she needs. Check for "Doctor's on Call" as well. Home visiting doctor's are relatively new but growing. Call the Alzheimer's hotline and they can help you locate additional help... or your local department on aging for your state or county. Shame on your brother!! Maybe if you hire a cute caregiver for him to flirt with he will come over!!! Hang in there and keep looking for alternatives. You will find your answer...
Home health told me, "It doesn't matter WHAT a doctor orders; Medicare will pay only what it'll pay." However, they did tell me about "MDs to You" - probably like "Doctors on Call" - in our area; a nurse-practitioner (communicating with a doctor, supposedly) makes house calls, albeit not always promptly... Heck, if she's just going to stay in the house, we might as sell the McMansion and have her move into my property with me! Many, many stairs. Did I mention that her HEARING AID got lost at the rehab (they claim not to have found it) and that her OTHER hearing aid broke??? So another day off work to travel to Big City; now immobile, blind, deaf. God must be testing us... Hope we pass...
one of the problems with staying at home (without Hospice) is the access to prompt medical care. Agencies can provide nurses but have yet to find one with doctors. The on call doctors are becoming more popular but not every area has them and many are nurse practitioners or physician assistants. MDs to You might be worth a try. The worst that can happen is you have to back up and find another resource. Perhaps an agency with a visiting nurse program?
Home health can be called for anything "new". It is not a one time and done. Yes, they will only pay for so much at a time but if some new symptom arises you can repeat. We did this with Dad and home health PT. He would use up what was available, fall, and do it again. During the year he was with me I think we had 4 runs of PT.
Medical appliances!! Dad and Mom had three hearing aids and a pair of glasses between them. That was four problems! What do you do when Dad's glasses are broken, you can't get him to the eye doctor, and he has to have them to see. The prescription is over a year old. You beg! I finally convinced a sweet lady to release the prescription and then had to beg for the lenses. That was my more difficult one.
The hearing aids are a bit easier. If you have the hearing aid itself then it can usually be repaired. The cost here for that was only $250 and it gave you a new warranty as well. A lost hearing aid can sometimes be replaced without an office visit, by the same office you purchased it from.... especially if it is still under warranty It is worth asking and I was successful doing that once. There are also visiting audiologist that will do hearing aids in home. I used one twice and it was a very positive experience. Once I learned about the repair (which only required me taking in the hearing aid) and the visiting audiologist, I was set! So check with all the local hearing aid brands to find one that has a visiting audiologist
You have picked the hard road but with persistence and patience you are moving along
Lately the companies don't make analog hearing aids anymore. These are the older technology and the cheaper ones. The ones that are paid by insurance.
The insurance co. usually pays $500 maximum. Today the new digital hearing aid costs $1,400 to $2,500 or so and the insurance still may not pay for it and if they pay for it is only every 5 or 6 years.
Obviously the analog ones are better for the elderly with dementia to save the cost. I hope some hearing aid dealers still sell analog hearing aids.
I wear digital hearing aids myself so I was told by my audiologist that the companies don't make analog anymore in the last 2 or 3 years. Still the government and insurance co. go for analog price most of the time now.
Digital hearing aids are better but more pricy. Sure hope your Mom can get a hearing aid so she can hear better. At this point, it is more important that she can hear the caregivers.
Sorry about your brother - you sure he does not have dementia? Or he is just selfish? Even if he disagreed with you about where Mom should go, it is still his Mom! Maybe he would turn around and visit her. How about his kids? The grandkids should see your Mom too. Well if the caregivers do the work, he does not have to do anything!
I have a hard time to understand the nursing home's attitude. My suspicion is these are not the ones for memory impaired so they are short on people with dementia - just like the hospitals; not dementia-friendly. Sorry they screwed it up and now Mom cannot go to any NH. Maybe you can ask an attorney about home health care and etc.
Take care of yourself and I think you are doing the best. You are right, the NH should not blame you for Mom's anger. It is just like the hospital - the nurse would tell my FIL to go back to bed impatiently!
Digital is the current rage in hearing aids. Mom's is actually a digital. Dad had one of each. I was not talking about insurance paying for a hearing aid... but for the hearing aid company to "repair" the hearing aid. It is a flat charge. They send them off, fix the internal parts, and repair the plastic parts. A good repair is undetectable. If the hearing aid is still under company warranty then they will replace or repair them. I have never claimed on on insurance. Just through company warranty. What is important, if you have to get a new one, is to try to find one similar to the one she had. Dad could hear better with an over the ear hearing aid but was used to the in the ear hearing aids. He tore up two over the ear hearing aids. The company finally replaced it the second time with an in the ear style.
Awareness of dementia related behavior is necessary to deal with dementia patients. There is still a sever lack of understanding and awareness.... even in some facilities that say they are dementia friendly. It is a matter of finding the right facility. Mom and Dad were delinquents!! They had to be together, while feeding off the worst of each other, and causing havoc all around them. I was honest with the care facility they are now in. I let them know they were going to be a handful to deal with. A good facility will work with you. Through proper interaction, appropriate medication, and a trained staff... we went from chaos to contentment without sedating either of them. I never went in with the question, will you accept my parents. I went in with the attitude, are you the right facility that will understand dementia and find a solution. In the wrong facility, many times the behavior is the result of improper interaction 'by the staff with the dementia patient. This is not what we want for our loved ones. That is why I say it is so important to spend time (more than once and more than a few minutes) in a unit watching the staff interact with the residents to know if the facility is worthy of your loved one.
I have a problem here with the way your Mom's NH reacted. Saying that you interfered and that it is Mom's fault for her anger and etc.? Where is the line? I understand we don't "interfere" with the NH's work by the management and caregivers, but what about family's right? We are able to discuss my FIL's state with the directors and caregivers. Certainly if they prefer to move to the other wing, we will try to comply but they cannot really tell us off like that.
When my FIl was combative, they were able to find the alternative to give him the right antipsychotic drug. But I cannot imagine my FIL's home would tell us off like that? The least thing they can do is to sit down and discuss with the family about the way to cope. Like try to go to the psychiatric ward first to get the right sedative and etc. How could they say it is your fault?
On the other hand if brother interfered (he is the one interfered!) then the NH may see the chance to ridicule the whole family and get Mom off the ward!!
If Mom were still in that NH, I would get an attorney or some authority to talk about it. But now thank God she is not there anymore.
"Sorry about your brother - you sure he does not have dementia? " Hahaha! That made me laugh... Gallows humor! He is just a typical MAN who thinks 1% of elder care is all that should be expected of him, the sainted son, and who gets a big head (I mean the one he thinks with) when women flatter him as "so devoted," etc. So unemployed is the actual fact, but I was seen by the entire staff as "less involved" simply because I work during the day! Both of us spent 6-7 hours a day there with Mom, but mine were the less visible hours. I can't defend this nursing home; we live in a podunk southern town, and there are a grand total of TWO here; the other is even worse (rates one star out of five; numerous lawsuits), and this one rates only a three. Staff is lower-class, underpaid, and quite ignorant, and the DON (not Mafia don, haha, but director of nursing) is a freakin' sadistic Nurse Rachet! They definitely pitted my brother (who thought it was a great place and just plain doesn't want to be bothered anymore) against me (I wanted her out of there ASAP and only grudgingly allowed her to stay after rehab ended -- prematurely). Had they not moved us down the hall, I might have even agreed to more "free" days, but not once we found ourselves in The Snake Pit.
All that said, Mom has done very well the week she's been home; much more relaxed and happy and functioning better and sleeping soundly -- even through the night one night with no potty breaks (so much for "unmanageable behavior"). However, last night, for whatever reason, I got a taste of what they've been dealing with. Mom YELLED (after being woken up by a loud party next door) for hours and hours and hours at the top of her lungs, and there is nothing wrong with her lungs! First it was, "I THINK IT'S TOO HOT IN HERE; IT'S TOO HOT IN HERE!" repeated roughly a million times, even after I turned on the a/c. Then, "Maaaaaaaaaa! Maaaaaaaaa! (her mother)" Then the names of all her deceased relatives, one by one. Literally for HOURS. Then trying to climb out of the bed (we had a wrestling match). Then she was pinching and slapping at me trying to get her back into bed. Even for frontal lobe brain damage: is this NORMAL???
No one is EVER going to take her (SNF) at this rate, we'll be lucky to keep even bad caregivers (the current apparently lets her sleep all day so she's up all night; yipee), and I may or may not be able to handle her at home, at this rate. She's also begun "sitting down" when I'm walking her from one chair to another; we had to call the neighbors to help get her up again! It's my brother's prediction coming true, but what to do??? We can't even resort to hospice as a last resort as long as she has that PEG tube in place...
I know from "preservation," but this repeating of things a million times at a million decibles is going to get on people's nerves eventually; does this phase end and another begin? Sad to say, I'm looking forward to her becoming more mute as it progresses!
Oh, but... In happier news... After sending off the remaining hearing aid for a $250 repair plus an addition $50 for "a rush job," I pulled a cushion off the sofa for Mom to sit on while grounded (before the helpful neighbors arrived on the scene) and, lo and behold, what should I find but her HEARING AID? Had she not sat down on the floor, I probably wouldn't have moved that cushion for ten years.
God answers prayer: sometimes in ironic ways! Who says he doesn't have a sense of humor?
I mentioned your brother and dementia because he liked to flirt with the caregivers in the NH as you said.
Good to know Mom is home. You sure there is no more sedatives you can try to calm her down?
She hasn't really been "agitated," per se at home; not like in the facility. It's just that she was awake and wanted attention -- IMMEDIATE attention, as is her wont (I call her "the impatient patient"). It began when her last feeding ran a little late because my brother finally deigned to visit for an hour (down from seven in the rehab), and she began to fall asleep in her recliner; THEN she refused to get up and go to bed! Yes, it is just like having a child or babysitting. "NO!" she pouted, sticking out her lower lip and crossing her arms. At bedtime, she currently gets (and I wanted to TRY to cut a lot of this out, but): Melatonin, Seroquel, Trazadone, Ativan... In other words, that should sedate an elephant... But not my mother in one of her "moods"!
I don't think my brother's demented, but he IS desperate for female validation; his b-wife is one of those emasculating types, always putting him down. And no, she nor her kids ever even acknowledge our existence.
Why I'm not reluctant to spend the entire inheritence on Mom's care, hee!
Yep, they want what they want when they want it!... no matter how out of bounds it is. Many times it is easier to give in than to fight the battle. As long as it's not a question of health and safety. Mom slept on the couch or Dad in the recliner many times. It is good that you know the difference between agitation and demanding. Sometimes the two can be confused. Demanding can lead to agitation but it doesn't have to.
The first thing I would cut out of that Med list is the Ativan. I have recently read that this medication can actually have the opposite effect on elderly dementia patient. I swear that is what it did for Dad. That night at the hospital he was sedated but still super agitated. The more they gave him the more agitated and sedated he became until he was in distress even in his sleep. Try dropping one at a time, giving it two weeks to figure out the long term effects, and then go forward or back as necessary. You have commented that the Seroquel has worked before. You don't truly know which of that list is the most beneficial since she went on all of them so quickly. You just have to go with trial and error but please give each move time to settle in before going on to the next one. I am just glad she is calmer at home. Perhaps a night sitter might help you get some sleep?
As for brother, at least he showed up. That's a step in the right direction. Sometimes we have to let them make baby steps. You over ruled him and Mom is at home. Let him pout a while
As for spending Mom's money, it's Mom's money. I will spend every penny Mom has if necessary! If I need something more to relieve some of the pressure on me... so be it! You have Mom and you need sleep. You have Mom and you need respite occasionally. If you have to buy that sleep and respite so be it!
Any luck in finding a visiting doctor or practitioner? Or a visiting audiologist?
I am glad you found the hearing aid! What a relief! At least Brother is visiting. It is his own call and it is his Mom. Don't worry about it too much. Sorry the grandkids are not close to Grandma. Hope you continue to do what you are doing! Deb is right, antivan is not very good for dementia. Keep trying this and that...