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Braida - My mom started off the same way. She was on a blood pressure med only when the UTI's started. The one thing I didn't manage to do was get her doctor to prescribe a low dose antibiotic early on. He insisted on treating each infection individually. I understand that to a degree (sensitivity of individual bacteria to specific antibiotics), but now feel it was a drastic mistake. Her 2nd UTI (that resulted in her psych ward experience) was from a pseudomonas bacteria (dipstick test will not id it) that had to be cultured and it was 9 days before it was identified. Her behavior was completely bizarre by that time -she couldn't toilet without assistance or even feed herself. 2 weeks before that she was still living independently and managing fine -didn't even use a cane. After that between UTI's or whatever other infection she may have had and meds, she didn't have a chance at normal again.

Absolutely everything Chimonger wrote is gospel. Take it to the bank.

Knowing what I do now (which is still too little), I would INSIST on a low dose antibiotic immediately since she has had recurrent UTI's. Any infection can cause mental changes in the elderly -UTI's are one of the most common and I think recurrent ones cause mental degradation and that people get to a point where they don't come all the way back anymore even after treatment. And you need to know even antibiotics could cause some hallucinations (Cipro is one of them). I'm not sure how effective it really is, but adding daily cranberry juice or d-mannose too-couldn't hurt to help UTI's.

I would avoid other 'demetia' meds for as long as possible. Mom couldn't sleep with Aricept -pretty common I've found, but amazingly I've heard doctors say they've never heard of it causing that problem. Every one of the other meds doctors put her on caused additional problems or exacerbated the behavior they were prescribed for. Every Single One Of Them! Seroquel & many others caused hallucinations. Another caused Parkinson-like shaking. And etc, etc.

Vision problems can also cause problems with hallucinating. See Charles Bonnet Syndrome.

I'd very gently try to explain to her that an infection or other is causing her to see these visions and that you understand how real they seem. They're probably scaring her to pieces. Mom called me once wailing that my brother was there with her and he wouldn't talk to her. Of course he wasn't there. She coped better after she understood something was causing it -she wasn't just going crazy.

I feel for everyone here. Been there, done that and completely frustrated with no adequate answers or direction. Until something is relevant is found we're just all left grasping at any available straw to try and help our loved ones (and ourselves as caregivers). Dementia is not normal aging -it's a brain disease whose cause hasn't been figured out.

Try the low dose antibiotics, cranberry juice and talking to your mom about the visions (hallucinations) to try to make them less disturbing for her. I will pray for good luck to you and everyone else on this helpful site and for hope of a medical breakthrough for this devastating condition.
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Braida,
I agree--I have witnessed far too much guessing. Unfortunately, too often, that's the best they can do.
There are so many possiblities as to what is causing "dementia" like you describe.
Could be UTI, TIA's, malabsorptoin of nutrients, odd adverse reactions to whatever meds she is taking, lack of adequate probiotics in her digestive system [especially after so much antibiotics!], It might be they are just trying to work things out in their head, and it's taking a circuitous route.
...many, many things.
They make their best, educated guesses...some are more educated and "on the beam" than others.

Some believe an elder seeing dead loved ones, is seeing them because the "curtain between this world and the next" has thinned, from age and infirmity.
Some have asked the elder to describe any conversations they had.
[[denying it's real, means nothing to the elder, and can add to aggitation]].
By encouraging them to discuss it, in detail, some will suddenly realize it's not "real",
or they may come up with details that lend credence to that belief.

Bottom line, as long as it doesn't cause them to become more aggitated,
if it seems to be helping, let them talk about it, see where the conversation goes; within their confusion might be clues to the confusion.

In my experience, it has always seemed, no matter how altered the mental state, there are some tiny bits that still try to convey their wants/needs.
IT can get tricky to tell what, though, unless the caregivers know the person some.

One Gma had Alzheimers, and nurses caring for her adamantly said she was incapable of carrying a conversation.
Yet, family knew her and her history, could carry conversatons--not normal ones, but in fragmented bits as her mind drifted from one bit to another.
One of my sisters demonstrated that for one of her nurses, who was flabberghasted, since Gma had not been talking with staff at all!
Somewhere in their minds, they know things are haywire, do not like it, and are frightened.
If we could just find the right tools to reliably and safely help them!!
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Very interesting conversation. My Mom's behavior seemed to suddenly take a downward spiral. She was so much more confused than normal, even her speech became somewhat garbled at times, and she would get up at 2AM, and 4AM, thinking it was time to get up and awaken me. Right away I suspected a UTI. A urinalysis confirmed. After the series of antibiotics (a week) she seemed a bit less confused, but then reverted back to weird behavior again. I asked the Dr. to do another UA,which confirmed that she still had a UTI. (Mild, they said.) Another round of antibiotics. She just finished them a couple of days ago. Sadly, though, I don't see much improvement in her behavior. She constantly comes out of her living area asking where her mother is. She insists her Mom was just there in the room with her. Also, her sister. (Her sister, who she was very close to recently died quite unexpectedly) I think she is dreaming/halucinating. I tell her she was just having a dream, and her loved one came to visit her in the dream. But she gets very disturbed with all of these visions or dreams, and says they are not dreams, but the people are really there! Could this still be the UTI, or just a step down on the dementia ladder, that causes them this distress. As Claire said on her post....confusion, anxiety, paranoia. My Mom is not on any meds excet heart meds for A fib, blood pressure, and heart related things. I'm vey reluctant to have her on any mood altering meds. She's sensitive to meications, and I think it could open up a whole new can of ugly worms. What to do, what to do. It's a dilemna. I think most of the Docs just play guessing games. :-(
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"Frail Elderly" is very much that! What most folks can do fine with, a frail elder cannot.
1. UTI's in elderly can cause marked mental/emotional imbalance, as their body chemistry fluctuates to handle an infection, or pain.
1-B. Often enough, suspected UTI's are really muscle spasms in the bladder.
2. Moving an elderly person, even as young as in their 60's, can be so difficult, gets them confused. The older and more frail, the greater the confusion and difficulty coping.
3. Too often,stressed facilities staff faced with keeping residents calm, will grasp at telling Docs the elder is behaving in ways that '..might respond to psych drugs, please prescribe something...elder is riling up other residents...etc....'
4. Over-worked Docs fail to think about situation adequately before knee-jerk prescribing those.
5. Commonly, elders are on LOTS of meds, which can interact, causing adverse reactions, but stressed people fail to think in those terms, in timely manner.
5. Even if only ONE medication, elders can have adverse reactions.
6. TOO OFTEN, there's over-worked, stressed staff, and no one paying adequate attention to the elders, to realize when an adverse reaction is happening, much less from psych drugs.
7. Industry at large, has difficulty recognizing adverse reactions, unless it happens immediately upon giving a med.
8. A psych med ordered when person is mentally unstable during an infection, may have those behaviors controlled during that time, then, when infection clears, the no-longer-needed psych meds keep being given as if still needed; none thinking to re-evaluate, discontinue or adjust.
9. An elder who has gone into psych-land, with or without psych meds, can have a harder time regaining presence of mind, and can be more easily upset with ensuing ills, med chnges, moves, visitors, etc.
10. Psych meds can be a godsend, but, can be difficult to find just the right one[s], get them to work reliably very long, can be unpredictable; the more meds, the tougher it is to sort it out.

It is important to avoid loading a frail elder [even those who do not appear frail], with too many issues at once.
It is VERY unfortunate when multiple things happen in short-order.
There needs to be other opinons found, for your elder!
UNfortunately, if she is moved again, the liklihood the condition can be compounded, worsened, increases.
It can take significant time, sometimes if ever, for frail elders who suffered mental imbalance, to recover their mind, with or without psych meds.
Even middle-aged persons, prescribed and supposedly well-monitored, have great difficulty.

[[just some things observed, working in nursing homes, hospice, and elder care]]

I really hope you can find a good resolution for this.
It is heart-wrenching, difficult to handle from anyone's perspective, no matter how well trained or how well-equipped.

{{hugs}}
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scaredclueless, I don't see why your mom was n a NH was it for dementia? Dementia n UTI can cause all kind of imbalance for someone with an illness. It can also be very painful. I wander why she is not on any antibiotics for the UTI? To me n I could be wrong thinking like this but, psychotic n pain meds r just a cover-up n not fixing the problem or problems. I would talk to her physician that put her on that Med to see his/her reason. I would also see about dosage compared to weight size for a lot of physician don't pay attention to that one. I also check out the place n see about getting her out of their if the workers seems to be inhumane n you don't like the answers that u r getting from the dr as if they r just shutting her up n not helping her. Good Luck.

Peghello, so sorry that happen to your mom but glad u were able to give her some peace of mind, body n soul before she passed. Sorry for your loss. You seem to have been a very great n loving caregiver n you did what was best for her. Your mom is at peace n I hope u r able to move on with your life while u keep her in your heart. Sending cyber hugs to you n your sister.
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I had the same type of experience with my mother. UTI that took too long to identify, psych ward and the godawful antipsychotics. She wasn't the same after and began a downward spiral. I was clueless what to try to do and there's not much except to hope future research will give us some answers. The meds doctors are currently relying on for dementia did nothing for mom except cause more problems -worsened agitation, confusion, paranoia, sleeplessness, you name it. She had adverse reactions to every one she was on -from Aricept to Xanax. It was an absolute nightmare for her and for us (my brother & I). We lost her in December after she fell and broke several bones. Her balance was so bad and worsened by an antidepressant she was on.

I don't have any answers. Before the fall I was trying to get her doctor to stop some of the meds and it did seem to be helping. There is no question that she needed something, but what.....well, I'm clueless. Why do the elderly have such horrid mental changes from infections (UTI's, etc.)? Why are physicians relying so heavily on antipsychotics & antidepressants when there are so many risks, they can cause permanent damage, and adverse reactions are frequent? I suppose mostly because they don't have a clue what else to do.

I'm sorry I don't have anything to offer. Dementia is just a godawful nightmare for everyone involved and we just need more research to find what is causing it and how to effectively treat it because we sure don't have anything at present.
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I have been on both sides of this discussion since I worked in a geriatric psychiatric facility for years. The staff does want you loved one to "quiet down." It makes their job easier and makes for a more peaceful unit. Having said that patients are often over medicated so the staff will have a "nice shift." I don't really know the answers but it is always better to be your loved ones advocate. Drop in at different times when you are not expected, be hands on with your loved ones, help them in their daily care if you can. Anti-psychotic drugs are used because dementia mimics psychosis in many ways, hallucinations, combativeness, not being able to judge reality correctly and having lots of fear.
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Wow...I'm so sorry you have all had these bad experiences with any drugs be it antipsychotic or any other types of controlled substances. I do know that when someone is experiencing hallucinations or delusions. It's very real to them and very scary at times. With these very scary episodes they might be hard to calm them down. So of course, the meds they want to give them are ones they would normally give to someone with bipolar disorder, or schizophrenia. But with LBD or other forms of Dementia sometimes those will not work because of how the brain is being affected by the disease. I wish there was some miracle cure for Dementia but sadly there is not. It's so scary what our loved ones are going through and just as scary that we have to see it all transpire.
I know with my mom she had LBD they prescribed meds that would get her to sleep at night..more for me to get rest. But all those they tried...did not work, gave her the adverse reaction. So be careful when administering any medications for Dementia patients. I had to find out on my own why it wasn't working...I did research on the internet about dementia and medications. Especially the antiphsyc drugs. The only thing I can tell you ..is do your research. Don't always rely on what health care providers offer you....you know what works with your loved one and if something doesn't work. Or upsets them...take them off the meds. I had P.O.A. I had the authority to make those decisions for my mom. Find out what your rights are. Its such a sad disease and hurts to see so many affected by it. I hope you find the right answers..God Bless.
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My mom is going thru similar; including the paranoia, screaming, yelling; but not constantly. She was in behavioral health and they kept her for alittle over a week where she had group therapy, saw psychiatrist and was put on meds -- lots of them; including aricept (which she had been on); namenda, zoloft, seroquel. She was calmer when I picked her up. She was treated for UTI and they released her to saying she needed supervision...which it turns out now is 24/7. So she has in home nurses/aids coming in on 12 hr shifts in her home. This just started yesterday. Mom (90 yrs) complained yesterday and said she doesn't like the meds because she is foggy and feels dizzy after she takes them. We rechecked with her primary physician and he agrees to continue on them for a couple weeks until her body adjusts and monitor and see how she does. She is dementia so refused her meds last night. I told her nurses that she must take the meds and if any trouble call county services number to say she isn't complying.
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You are right in being outraged by the use of antipsychotic drugs in nursing homes. My father died after being given Risperdal in a nursing home and two different hospitals. We were told he had "sudden on-set Alzheimer's" and that no medication caused his sudden decline. We found out he was given Risperdal after we died and we obtained his records. These drugs are given to keep patients drugged so they will be less work for the facility; less work means fewer employees which means greater profits for the nursing home. It's all about the money. It has nothing to do with caring for your beloved relative. What I also learned through my father's case is that a UTI can cause mental imbalance in older adults. Your mother should have been treated with antibiotics, not antipsychotics. You should get your mother's records to see if you should file a complaint with your local health department. If you are POA, you have the right to refuse these meds for your mother.
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My beautiful mom had severe COPD, temporal arteritis, and a sudden heart block, all within the last year of her life. During the year prior to that she was playing competitive duplicate bridge at the age of 86. Because she lived alone and was suddenly declining, we moved her from AZ to IL to be near the family, and the move was so very hard on her. We placed her on hospice even though we knew she could survive for a month or years. But she fell while staying with my sister - broke her pelvis in two places - and we needed to admit her to a skilled nursing care facility to "heal" because she needed care 24/7. Within a very short time she was given a tremendous amount of drugs which caused her to be paranoid, manic, hallucinogenic, and she started screaming and kept trying to leave. They restrained her so that she wouldn't get out of bed and fall. My sister and I visited daily, and the staff knew we were vocal advocates. Shortly after arriving the hospice nurse told us my mom was in kidney failure. Her urine output was scant, she had a fever, and she was "out of it." My best friend told me to inquire about a UTI because her mom had just gone through the same thing. Indeed, she had developed a UTI which caused all of her symptoms. A round of antibiotics "cured" her kidney failure. Skipping ahead two months, we watched my mom decline further, and as her POA I finally decided to take her off of ALL drugs except for the ones which helped her to breathe. (Her biggest fear was that she would be gasping for air during her final minutes.) I truly felt that the drugs she was given were causing her mental/personality issues. The staff and hospice argued with me, but it was the kindest and most humane thing I have ever done in my life. Within a couple of days she was serene and comfortable. She was able to watch TV and we had some wonderful conversations. She only lived for six more weeks, but she was herself and not the terrified, paranoid, screaming, unrecognizable person that she had been. She was my best friend and I miss her every day with every breath that I take, but I know in my heart that I did the right thing by taking her off of the drugs.
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Has anyone thought to check her for dehydration?
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Had the same experience when my dad had his knee operated on last year. He was sent to a skilled nursing facility for physical therapy. Did great the first two weeks but after that all went down hill. the facility had him so paranoid to even get out of bed as they had an alarm on the bed. It go to the point where he was so anxious and upset that we couldn't even leave. Someone had to be there every day with him. He lost weight and became extremly agitated all the time. Found out they were giving him pain meds a month after his surgery. That were keeping him sedated with the pain meds. I got him the heck out of there and fast. When he came home he was so afraid to move and kept asking if he was allowed to use the restroom or if his it was ok what he was wearing. He had a severe panic attack and wound up in the hospital one day after being home. Thank god for that hopsital. They had a physician prescribe remeron for dad and upped his antidepressant and no more trouble. Dad does have mid stage dementia but those drugs given by someone that cared and knew what they were doing helped make all our lives much easier. Get your loved one the heck out of there or read up on what drugs they are giving and make yourself aware and informed and straighten it out. They need to do what you want not what they want. And if they don't turn them in to the Attorney General or tv stations and get them investigated. I guarantee if you threaten with that, they will stand up and take notice of what you want and do it! They just want to put these poor people in place where they start acting like they are psychotic and they are not. They become a product of the environment they are put in. Good Luck.
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Part of the care that hospice should offer is to deal with her anxiety. That will be handled with medication. I hope they can intervene on her behalf. You say she is on a SNF unit - that means she is getting some type of therapy. I don't mean to be too pointed here, but if she is getting therapy to recover - why is she on hospice? Hospice deals with end of life care. If she is truely moving towards the end of her life (and I'm a huge hospice fan) then why is she getting therapy? The answer is often, sadly, money. Nursing homes with SNF facilities are allowed to put nearly any one on Skilled Nursing for some period of time as they are 'evaluated'. Hospice is usually not legally allowed at this time, but I have known some cases where they were able to squeak in and even a few cases where they were actually needed. Is your mother truely on a Skilled Nursing (SNF)? The most amazing thing to me is that Skilled Nursing is allowed for the diagnosis of progressive dementia. IMHO it should only be allowed if there is actually something that the therapy can possibly do - such as a dementia patient with a fractured hip that needs help to recover and perhaps walk again. But I digress. I work in LTC and specialize in Alzheimer's and dementia.
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Get your mother moved ASAP. Had the same situation with my step-father. I took care of his "situation" and my mother. He was beligerent and abusive verbally.He slapped nurses and was combative.They began "sedating" him. Except he was knocked out with enough stuff to put a horse down...he would sleep for the better part of 3 days. Then, he was confused and the cycle kept repeating. What happens when we can't/don't eat and get proper hydration. I tell you his weight plumited. It is slow euthinaztion.I met with the director and told her that I understood that the safety of her staff was her responsibility, however his safety was mine. My issue was not the sedation but SO MUCH. Too high of a dosage. It was not being administered with any reason. If they canot go along to get along, this is the writing on the wall. I know you want the truth. Don't find out where this goes by just hoping it'll get better; get her MOVED. She should have a "case worker"hopefully. She can help search for a vacancy in another facility if you need help. Keep your head about you. Obviously your another foot soldier in the unseen army. But you are not alone. There are thousands upon thousands of us out here and we support each other as best we can. May God's peace be with you and your strength be renewed daily. xo
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all of this happened to me last night and sonow i have lost all faith in hospitals, nursing homes, and to some extent Hospice. my 92 year old mother is in a NH (SNF) and she is, and always has been high anxiety. lately, and since she was put on Hospice becuase of COPD her dementia has dramatically escalated. She calls out, 'Help' and 'I'm dying' often. Yesterday the care facility called a 'care meeting' and i was completely blindsided....i thought the meeting was to tlak about her meds, but they basically told me that she would have to be medicated on anti-pyscotics (and if that didnt work) she would have to move. I have never felt so betrayed and I never thought my mother would have to die in a place where she was not wanted or was an 'embarrassment.' THEY are the professionals and i feel like they just dumped her im my lap and said.....'now you do something with her!' I understand that she may be upsetting others with her outbursts....but THEY are the ones who know the drugs and the options and still I felt like their message was....'you can die here is you are happy and quiet!'
this has been a nightmare.....even when she was in the hospital they would call me at night and say...'your mother is very agitated, would you come and be with her to calm her down?' The point is that nothing can calm her down. she is terrified and she still knows enough to know that she doesnt know much anymore. her would is closing in on her and i feel like no one is there to help her. i go and sit with her each day but i am the only relative (no siblings, no husband or children, etc.) and i work full time and i am not of the personality that can just sit with someone. THAT is why i sent her there.....for caring and compassionate care, even to the end. the nurses are kind and loving but the 'philosophy' of the place and the upper management seems to be....'be a happy little old lady and get along and be quite...'
last night realy was one of the worst nights of my life. i called Hospice and they will see if they can intervene......is this sort of like Mary and Joseph? no room at the inn? 'go back to the stable where no one will see you...to have your moment of human experience with life and death.
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Moving someone with dementia is extremely stressful for them. Her acting out 'screaming' may be her way of expressing fear or some other need right now. The LTC facility where she is at doen't know how to deal with her in any other way except to administer medications. The drugs are not to 'treat' her dementia in any way, they are to control her behavior. There are some places that will endeavor to meet your mother's needs in other ways, but they are few and far between. You might try meeting with the social services and activity directors, along with nursing to try and speak to them about providing things to keep your mother feeling more secure and engaged. Your local Alzheimer's Association could be very helpful to you at this point. If it were me, I'd be searching for another care facility. One that advertises 'person-centered' care and uses drugs as only a last resort. By the way, did the UTI get cleared up? A UTI can make behaviors go through the roof! If they started your mom on the drugs while she still had the infection, and it is truely cleared up now, it may be that they can taper off the meds. They should try at least. Make sure they are giving her plenty of fluids - dehydration contributes greatly to UTI. And if she's constantly sedated she's not drinking much. Hope this helps! My heart goes out to you.
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Is she screaming because she is in pain? If not-then you need to consider that she is not in touch with reality and an anti-psychotic drug is appropriate. A patient who is screaming constantly puts a terrible stress on those around them as well as themselves. Why would you want someone to remain in that state? Risperdall has helped my mother control her rages and participate in her own care and decision making. I wish her doctor had put her on it years ago. If you object to the medications to make her more comfortable-keep her in your own home.
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even though my mil lives with us its not just the nursing homes etc. doing this. its als the doctors office too. i changed doctors just for that reason.my mil within 2-3 days will be hooked on controled or narcatic drugs. i keep everything under lock n key which i have.she wants to take her pills when and how she wants to not the way she is suspose to.alot of times talk to the phamachist some of them are a great help. some will tell you to talk to the doctor. hang in there it isnt easy
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You are absolutely correct in questioning why these medical facilities are pumping your mom full of toxic psychotic drugs instead of feeding her healthier food and perhaps giving her non-toxic vitamin (like a good Vitamin B Complex) and mineral (like an absorbable form of magnesium) supplements to calm her nerves down and help her relax. If you are your mom's POA, DEMAND that the doctor wean your mom off of those drugs and put her on Vitamin B Complex by Jarrow and 400 mgs of Magnesium Glycinate. Having dementia just means that your mom's memory is not functioning 100% but it DOES NOT warrant her needing psychotic meds. ALSO make sure that the doctors have done a THOROUGH job of healing your mom's UTI. She might be screaming because when the UTI gets bad, it can be painful. DEMAND that they take a urine sample to make sure there are no bacteria and DEMAND to see her labs to make sure that her White Blood Cell Count is w/in normal range. If any of these results are abnormal, DEMAND that they do another blood test for Sepsis and if Sepsis is present, DEMAND that she be put on an antibiotic to get rid of it. Usually that will take 14 days which after that time, DEMAND for another urine culture, lab test for WBC count and blood test to make sure the sepsis is gone. I am telling you this because my mom has dementia and the doctor was acting like whatever she was reporting to us or however she was acting was not relevant anymore and that is when I had to PUT MY FOOT DOWN and do what I needed to do to protect my mom. You gotta do the same thing too. Good luck. All the best. Keep us posted.
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IMO, antipsychotic meds are given because they are not DEA scheduled drugs. It's less paperwork for the doctor. Also with this "police state" the country is in, doctors don't prescribe (what I feel in many cases) are more suitable and safer alternatives, whereas antipsychotics are handed out like candy even though their side effects can be devestating. Just my opinion. I am not a doctor, just a care giver who has been through this.
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The main reason is no one can handle the screaming! No matter where she stays she needs to be managed and behave in an acceptable manner. It is too much stress on the surrounding patients and staff to put up with yelling and screaming. She should be medicated to a point where she is calm and peaceful. This will help her mainstream into the home, nursing care facility or your home. A geriatric psychiatrist will be able to target the correct medicine and dosage to your mom with the least harmful side effects. See one immediately with your mom and it will open the world for both of you to move forward to other living arrangements.
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