Help! How do you stop incessant crying??

It started a little over a month ago, my AD wife would begin crying, but distraction and redirection always seems to be able to stop it. Because I work (age 54) I tried to get her into daycare. She has now been expelled from 2 different facilities because of her constant crying, whining and need for one on one attention. I now have engaged home care workers because my parents (bless their souls) cant take 8 hours of tears.

It begins as soon as she gains ‘insight’. She gets up in the morning and finds something she can’t do or doesn’t make sense to her (like putting the cat food into bowls) and she then ‘discovers’ that she is ‘stupid’ and the tears begin. The more things she tries the dumber she feels and it is self-perpetuating. SOMETIMES distraction will stop it (“hey look at the bird”) and her normal voice returns for about 5-10 seconds then it is back to the whining.
She is incredibly needy and has to hold my hand constantly. Walking helps a LITTLE but she still wimpers. Driving in a car can put her to sleep but then she is awake & crying when we stop.

The second daycare has been wonderful and worked REAL HARD, but when the other dementia people began complaining to their families they said my wife had to go until we got it under control (Yeah, a dementia person remembered enough to tell their family about my wife’s antics – THAT IS A PROBLEM)
Sometimes she cries for just 2-3 hours but then it is 8 hours of whimpering. (“I, I, am not sniff, sniff, crying . . . “) I am not sure she knows she is doing it. We of course can’t go to restaurants or now, even out shopping. It is getting real hard to take. THANKFULLY she does sleep all night!!!

She has seen a gerontologist, psychiatrist and neurologist. She is in Aricept, Namenda, Zyprexa, Paxil, Seroquel Depakote, Klonapin AND Ativan. She has so many drugs on board that she sometimes gets rubber legs (falls & almost falls) and STILL the crying continues. Sometimes her gibberish speech becomes stuttering (and whining) I think it is related to extreme anxiety not depression. During the worst of it her outstretched hand shakes/quivers like she is scared to death.

Any ideas?
Thanks

Maybe some of the meds are giving her this reaction?

Good thoughts . . . When she is crying she does complain of multiple pains. Hip, back, knee, butt, etc. But nothing consistantly.
However when she is not crying (just after waking up) I can hug her and she doesnt indicate any pain. While lying in bed she doesnt indicate any pain.
We have tried motrin and Tramadol and even a few oxycotins and nothing seems to make a difference. . . . (?)

m-man, I know you are a medical professional but I think that perhaps the multiple meds might be a cause-worth looking into, particularly might be the cause of the shaking hands. Thankfully DH doesn't cry but is agitated and aggressive. Honestly I don't know what I'd do if he cried all the time. Sending warm thoughts (and patience) your way.

Hummmmm . . . . .
LFL, I have gone over the meds and am trying to look for side effects and interactions. But theve been changing so frequently lately. Almost one a week for the last month and a half. I have even considered possible endocrine problems (low blood sugar and hyper-adrenaline)

JudithKB, strange she DOES bite her nails until they bleed!
I never thought of the crying as 'compulsive' but always anxiey related. Hummm something else to think about.

I knew I could get some ideas here!
It is hard to get the docs to dig deep during the visit. Especially when she is crying in the hallway & the office(!)

I have even considered stopping the aricept/Namenda hoping she might fall deeper into dementia (quiet incontinent stage) but, I am not sure that would work.

my opinion only but it does seem shes on alot of medication. some may have the depressive side effect. if it were me, and this is my opinion only, i would wean off some and see how she does. you can always add back if its a negative reaction. i tend to think less is more when they are well along into the disease.
divvi

Oh this just breaks my heart. There is a woman at the nursing home who cries all day long, her children (who do not visit) will not medicate her because of the "black box warning" Lord but it is hard to see her suffer needlessly. I do what I can to help the poor dear. But as soon as she is not one on one with someone she starts crying again. Rips at my heart something fierce.

I can't help but to agree with Divvi, that is a boat load of medicine your DW is on. Do you have a geriatric-Neuro-psych doctor? In my experience they have the most compassion and DO work hard to try to bring their patients relief and better quality of life.

I too can't help but wonder if the poor dear is in pain..... Does she give "telltale" signs, like for example, does her face express pain - are her brows furrowed?

You mention when she first gets up, and while she is laying in bed she doesn’t show signs of pain. What about the rest of the time? When she is crying have you tried to lay her down to see if this relieves the crying? Just throwing out thoughts as I think them…. Has to be beyond difficult to witness, my thoughts are with you both ♥

<<is a Pharm d not current. I suggest you enlist the advise if Psychiatric Pharmacist to get the 3 specialists you've seen working on the same page. I believe she's grossly over medicatedd and must be carefully titrated off some of the redundant meds. Good luck

I agree I have NOT wanted to ever use this many meds however . . . .

While this many meds would put me into a coma, she is still hyper(!)
I have done it to see what it might take to get ahead of it all. (IF anything can?)
Distraction & redirection doesn't stop it, and if each med by itself does not cure the problem is there ANYTHING that can stop it?

While I have become used to it (as much as you can be - y'all understand) If she cant attend daycare or keep a home care aide, then my choice becomes one of either leave her home alone or quit work. IF that happens, I will crash & burn quickly. So it becomes a problem that MUST be solved somehow.

There is so much collective knowledge on this site. I will keep trying and keep you all posted.
Jim

I hesitate to give you my answer because it sounds cruel and uncaring. I know that you say that you're used to it, sort of. But it would drive me out of my mind. I would have to put my spouse in a care facility because I couldn't handle it.
But to get back to your own situation, you say that either leaving her alone, or quitting your job, would cause you to crash and burn quickly, so it adds up to the same thing. If she were in care facility and they did find a way, or drug, that would make it possible for her to be at home with some help, then you could always bring her home at that point.
I remember a patient in one care facility who acted in a compulsive way singing the same nursery rhyme all the time, with almost no pause in between (much like the needle on an old-fashioned record would stick). Although she was only about 60 and was physically healthy, she died within the year. There's probably a name for it. The nursing staff, being many, could handle it, but one person being alone with it all the time is crazy-making.
I'm sorry I don't have anything concrete to offer you, other than what I would have to do in order to preserve my own sanity. Since I would be the only one to make decisions for my spouse, I would have to retain than ability.

Hospice could come and do an evaluation. But, that doesn't solve the problem for her care while you work.
Hospcie will not stay on board for AD persons until they have to be in bed all the time. They have guidelines
they have to follow for various conditions.

I have to agree with Mary 75 your only real solution is to ask your doctor to have her admitted to a nursing home and ask for an evaluation of her meds while she is there. Maybe they will get the situation under control and you will be able to bring her home. We all can understand how difficult this is for you and really most don't understand how you have been able to handle it this long. I know I couldn't.

Ok. I'm going to give you an off-the-wall suggestion, along with the obvious med mods.

Get her a doll. or possibly a stuffed animal, a real appealing one, and tell her that's her happy doll. That it will make her happy if she holds it and squeezes it, but it will have to go away if she cries, because it doesn't like crying. She can talk to it and tell it her problems. For my husband it was a thing called a sing-a-ling, which if you squeezed it would make a song. He loved it, and listening to it he would stop his sometimes constant noises, and take it and squeeze it himself and smile with a beatific smile.

This is basically a magic feather (as in Dumbo's which allowed him to fly). You see them frequently with NH patients.

Another calmer is water. Washing things, hands, wrists under the faucet. This works with almost every age! if you can get them to a sink.

Hello,
What worked for my husband was having him admitted into a psychiatric-beharioral (locked) unit which was part of a hospital. Hospitalization insurance covered the cost. My husband was already living in assisted living. His behavior was spiraling out of control. Hours of sobbing and then episoids of anger. Then more medication, none of which seemed to help the underlying distress/depression. Fortunately the doctor in charge of the unit where he was admitted was a psychiatrist who also had a degree in pharmacy and had worked a lot with dementia. By the time we took my husband to this hospital, he could hardly talk, walk and couldn't feed himself and complained of aches and pains. He was definitely overmedicated. The doctor started withdrawing medicines and my husbands behavior went out of control, but luckily they gave him one more chance and then everything changed. After two weeks in the unit my husband was discharged back to his ALF. Everyone is thrilled that he is back and is now the nice guy that he used to be. The doctor decreased his Aricept and Namenda, took him off Seroquel and Ativan, lowered his anti-depressant and put him on a (4 times a day) low dose of abilify. I describe my husband as spiraling because as his behaviors got worse and the local docs kept trying something else, sometimes adding one to another. He was over medicated, but needed to be in a facility which could watch him and adjust meds as needed (or give him a fast acting shot). This was a very difficult decision for me to make until I was forced into it, but in restropect it has made all the difference in the world. I hope you can find some relief for both of you,
hikergirl

Interesting, Marilyn, that the ALF gave her tic-tacs! I've been doing that for years with DH. If he's aware that I'm not feeling good- he gets it too - whatever it is, so I bring out the tic-tacs - and his ailment goes away. Doesn't work for me though!

I emailed the docs and the best answer I got was to bring her to emergency. I know ERs and ER docs and I have little faith in them doing anything.

Her abilities - Dresses with assist, showers with assist (with very little to no fighting) asks permission to toilet then goes by herself. Ambulates perfectly. Feeds herself, finds food in the refrigerator (fruit, snack bars) and eats it (she peals her own oranges)

The ideas about physical pain are excellent. Since I posted I have TRIED to do a better evaluation of it.
Lying in bed, in the morning (when she is most calm) I touched her knees, back and shoulder. I did range of motion on each.
She has never complained of shoulder pain so that was my control. She did complain of pain to her L hip and her R knee when bending. So I began giving her 100 mg of Tramadol three times a day along with the other meds.

I have seen a DECLINE in the crying. :-) It is not gone, she still whimpers. (annoying as hell) It is as if the whimpering is a learned speech pattern. She can even deny whimpering in a whimpering tone of voice(!) " I. . . I ... am not, sniff, sniff . . . crying . . . sniff) Interestingly she has no tears. She sweats but no tears while crying. Perhaps a sign that extreme frustration is under it all and not any real sadness or depression.

Her aphasia is bad enough that you can rarely understand what she wants so maybe . . ? The aphasia has also complicated any/all attempts to get to the underlying cause.

The crying can still break out at any time but it seems to be when she is frustrated (insight) I asked her why she is crying and she replied "Because I don't know what I am not doing". The crying can start when she needs help doing something. She becomes frustrated and I step in to accomplish the task and she gets angry/more frustrated/crying that she could not do it by herself.

This is the problem with using any physical distractions. folding, washing etc. I do the laundry and would LOVE to have her fold things! She starts by folding maybe one or two things, and then 'bam' the crying starts because "I just cant do it!!!" She throws the things down and walks/storms away. Even though she was folding things just fine.

The crying has sometimes been able to be stopped/reset by walking (around the house, around the pool, around the block) or by LYING on/in the bed, sometimes with me lying next to her and holding her hand. She like hand holding too. (me or my mom or dad)
I just endured an hour+ of crying while I swept & mopped the floors. I am now sitting at the computer and she is asleep in bed. (ahhhhh quiet . . .)

She is so atypical (as noted by AD folks who have met & worked with her) Since no single thing is working I think is gong to be a muli-pronged approach.

Wish I could tell you what to do...I have no ideas at all. My question to you is how did you find a caregiver to come into your home and will that person be there 24/7 or just on a hourly basis?

The caregivers are from an agency. I work four 10 hour days. The plan is for mom/dad will watch her in the mornings at their house (when she is most controlled) and then bring her back home for a caregiver from 1PM to 7PM. Kinda like daycare in my home.

One caregiver has refused to come back after just 2 days.
The other cargiver will make her third visit tomorrow. (will she stay? I donno, she complained that our cats have fleas and she wanted to be assured they were treated before she returned . . . )
Today the 3rd caregiver came by for an orientation. Will she stay?

We live in Los Angeles so resources are not a problem The only issue regarding an admission to geripsych will be with our insurance plan. They have been good so far but nobody wants an admission.

m-mman: Are you saying that the difficulty with a geripsych unit stay is that your insurance won't pay for it? Is your wife covered by Medicare? Medicare and our supplemental Blue Cross paid for the entire geripsych stay (well, I did pay $16 for a haircut)! In addition, his LTC policy paid the daily rate because it was considered a subacute unit of a NH (I know, that sounds strange, but good). The stay was considered medically necessary to treat the symptoms for AD; perhaps if you check with your insurance company before you try to get her admitted they can tell you how it needs to be described in ordered to be covered.

It's a shame that she is apparently in distress much of the time. I don't know how she can have any quality of life that
way and hope that you can find a solution for both of your sakes.

MMman- I applaud your evaluation of your wife's problem, and know that you are on the right track to solving it. The stupidest advice is an ER visit...
Energency room visits are for life threatening events only.....The routine is the same everywhere.,...tests,bloodwork, monitors, and an analysis that the patient is not in immediate danger of death. From that point onward, they are pawned off to other doctors who can shrug their shoulders and wonder what is wrong...most do not really care....The emergency room is for very urgent life threatenening problems...not miraculous medical discoveries to cure every ailment. Even specialists are often baffled, have no clue, and offer placebo suggestions....
So MMan- you are on the right track...physician- Heal yourself....You are already making progress in trying to understand the causes of the crying, and able to stop it somewhat....Continue along that path, and you will discover that the problem may be something that is not medical, but maybe emotional, spiritual, or perhaps her own awareness of knowing that she is putting you through such a heartbreaking ordeal, Never underestimate her own understanding of the situation, and try to see it from her position.....perhaps she is soothed best by you, and that she just plain loves you so much that she is sad that she is in the position she is in....The cause could be anything at all.,...and likewise, the cure can be anything at all.....
Try playing Shirley Temple movies over and over....try watching Under the Tuscan Sun, try playing Mozart's first concerto, try painting your face blue and thumping on drums...try painting your nose red...try wearing a latex glove over your head and clucking like a chicken..Try drinking water while standing on your head....Do an impression of Arnold "I'll be back...pout your clothes on upside down...wear a banana cream pie on your face...try counting backwards by 8, try spelling the word RACECAR backwards (ya can't miss), have her draw a Digital clock and make it read 1:23...take her for a ride in a taxicab (in L.A)...
Try anything!!! ride the space shuttle...order an upside down pizza...go to a McDonalds, and tell them you want a cheeseburger with no cheese, piclcle, and no bread....and pay with $8.32 cents in exact change.....
I am praying for you MMan, and know that you will find something that works (beside medications) as long as you do not quit and give up hope....Success to you my dear friend....

MMman. when you coresponded with the MDs, admittedly the best suggestion was to present at the ER.
Wouldn't this be the easiest route to admittance to a Geripsych unit? I've always found ER docs objective is to as quickly as possible diagnose and get the patient referred to the appropriate service. Keep in mind the ER admits the majority of the patients in most hospitals and that generates revenue. m

i would agree that the easiest route for me would be thru admittance to the geripsyche unit stay would be thru the ER. not fun to comtemplate but yes the drs there could facilitate a faster easier way for admittance. it maybe could also be sort of obsessive compulsive disorder the crying. so many grab onto something and it becomes such an obsession like pacing repeating etc. just me but yes the quality of life should be taken into consideration for you both. constant upset and crying just doesnt seem normal, and i would definately consider a gerispysche stay to iron out the right meds so her and your quality of life improves. some of these meds may actually be making her more depressed and put her into this state rather than helping. finding which work and dont is crucial. hope you find the answers.
divvi