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My mother has been suffering with Alzheimer's for about 9 years and it has been a learning experience every step of the way. She is now in her third round of hospice, following 3 separate hospital stays in the last 3 years, one of them for broken bones following a fall. She has a very strong will but her body is frail. A few weeks ago and at almost 93, she has started constant chattering repetitive nonsense non-stop for hours and hours on end. She was on and is now off Haldol because of terrible side effects. We are trying to manage with Lorazepam but it doesn't help with the chatter and everyone is exhausted, especially my mom.

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I don't know how helpful this will be....

I didn't want anyone caring for my husband except me, but close to his end, I reached a point I didn't know how to care for him anymore so let in hospice. It ended up being during his last eight days.

Bear in mind, as I learned to, that hospice (like other professionals) tend to only give care based on their experience (e.g., this amount of drug X works best for such and such disease).

First priority for hospice was pain management. I kept telling them he was still in pain, they said impossible. My persistence led them to bring in their pain specialist, who also said it was impossible for him to be feeling pain.

So the Universe has a wonderful way of having my back, and what happened was a particular thing that we all knew would cause my husband to react with pain, happened, and in front of the charge nurse...who only then believed me. And then they altered the meds. It would keep him knocked out they said.

Then I told them he was still cognizant and reacting to me (and pain)--that it wasn't involuntary movement on his part. I told them I had "tested" it out, and had a friend watch me, too, who also said it wasn't involuntary. Hospice said that couldn't be.

A very special male nurse let me show him "the test" and I told him what I told the charge nurse and social worker. He saw that my husband WAS responding to me, it wasn't involuntary. An adjustment to meds were made again.

Then my husband began constantly howling with pleas, including pleading with his deceased father to help him, asking why wasn't he helping him, then pleading with his deceased mother about why wasn't Dad helping him, etc.

The very special male nurse finally saw/heard this; I heard him tell the charge nurse on the phone that she had to do something--"this poor man is being tortured" (mentally).

Another change of meds.

In those eight days, these things and other things happened--b/c they wouldn't initially believe me (and I understood why they "couldn't").

What bothered me was thinking how many other LOs have suffered unnecessarily either b/c what caregivers were describing didn't fit medical "molds" and/or the caregivers didn't know what they were seeing was actually cause for alarm, b/c they were told their LO was okay.

My points to this winded reply are:
Not everyone fits the mold.
Keep observing for yourself and stay persistent in your quest for them to keep altering their strategy. If they think what they've done is "enough," especially when family stays silent, that's all they'll do.

Quite a few people had to be forced to think outside the box with my husband, and I cringe to think how he suffered b/c they believed I didn't understand what happens when the body is in shut-down mode. What THEY didn't understand is how keyed in I am to such things...and after taking care of my husband alone for seven months, I learned his body, his reactions, and learned to think outside the box. (Had go-arounds with the oncologist, too--I'd say such and such is happening and he'd say no, it wasn't...but he learned, ah, yes, it was.)

Best wishes to you, your family, and your mom. I know how awful and unnerving "the noise" she makes must be for you.
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bundleofjoy Apr 2022
hug! i learn a lot from your posts.
:)
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Contact your mom's hospice nurse to update her on this new behavior; I'd request a higher dose of Lorazepam or a change to Ativan or another anxiety medication. Your mother should not be exhausted or anxiety ridden in any way, shape or form now that she's under hospice care. That's the whole point OF hospice; to keep her comfortable at all times.

My mother (with advanced dementia) had a horrible time with Sundowning and it was getting progressively worse with every passing week. Her hospice nurse was able to keep things relatively quiet by increasing her Ativan dose from .25 mgs to .5 mgs every 8 hours and then supplemented with as needed, too. That did the trick with her angry outbursts and anxiety in general. I believe your mother's constant chattering for hours on end is a sign of agitation/anxiety as well. Alz/dementia is such a hateful condition; I'm sorry you are both going through such a stressful situation. Sending a hug and a prayer that it's all over soon, and mom's at perfect peace. I felt relieved when my mother passed last month after suffering for a long time with dementia. It's just too much for the poor souls to deal with.
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VA2ndof4 Apr 2022
Thank you for your advice and support. There is so much confusion about anxiety, agitation, combative behavior, etc. My mom is not combative, she is afraid. But when she is forced to do things she doesnt want to do, she can react badly. I imagine having strangers, and to her everyone is a stranger, telling me what, when and how to do things, including using the bathroom! Or talking about me like I'm not in the room and not being able to repond. It's heartbreaking.

It has been a long road and especially stressful in making decisions about medications. I found a lorazepam support group on drugs.com with people who are actually taking these drugs. Reading through their personal experiences helped me to understand how different drugs not only work but how they make them feel.

There are no easy answers on our long journey, but always trying to understand how our loved one is feeling can help in making the decisions they can't make for themselves.
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You have to realize and accept the fact that Alzheimer's is a deadly incurable disease that destroys the brain totally. She has arrived to the last stage of the disease when there are almost no live brain cells left. Medications to help her dementia don't exist. Only drugs to keep her quiet to allow the caregivers to catch some deserved rest. Lorazepam is too weak to sedate her, while Haldol is too strong. There is practically nothing that can be done at this time, other than to put her under anesthesia. However, it appears that the end is near. With honesty, she has been dead for many years, but the caregivers and the doctors have kept her breathing to prolong everybody's agony. I don't think that the caregivers feel now very proud for having kept her "alive" for so many years. I hope no "google doctor" pop-ups with the brilliant idea that she has to be tested for UTI.
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cignal Apr 2022
please stop posting on these forums. go find some existential dread forum to post your pointless non-sequitur negativity.
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My mom takes Trazodone 100mg for the non-stop chattering. She takes it three times a day. The medication works great but it wears off within 4 hours. They started her on 50mg after a year it was increased because chatty cathy was back again. Ask the doctor about it.
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Clairesmum Apr 2022
good suggestion. trazodone and mirtazapine are both likely to cause some sleepiness - not a lot, but enough to help reduce to non stop chattering. The hospice staff should be able to use a pain assessment tool designed for non verbal patients. Offer to explain to hospice nurse what you see and hear in your mom's behavior that leads you to the conclusion she is in distress/discomfort. PAINAD is a good one. She may be having mental distress and physical distress that is. just as challenging as cancer pain, but not as dramatic. The attitude that since she has dementia and is dying, the pain isn't really affecting her is. not problematic is 100% false.
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The use of psychotropic medicines in the elderly is a big challenge. First of all, because old people have a slower metabolism and an increased sensitivity to their good and also bad effects. They only tolerate small doses and depending on other medical conditions they suffer, some of these drugs can't be used. They also have bad interactions with other medicines. So, every patient is unique and what works for someone, would probably kill another one. So the fact that one medicine helped a particular patient, doesn't necessarily mean that it will work in another one. Haldol and Seroquel are both anti-psychotics. That means that they can improve hallucinations, delusions and agitation in schizophrenics and other types of psychosis. They have no beneficial effects in dementia, other han knocking out the patient. Haldol has very harsh side-effects. Seroquel is more benign but it has a very strong sedative effect. Furthermore, all antipsychotics increase the risk of cerebro-vascular accidents (strokes). They can be used in extreme emergencies, but its on-going use is discouraged. Doctors who prescribe them risk liability if the patient suffers a stroke. Ativan is a minor tranquilizer used to treat anxiety. It's rather weak to control agitation, but is not very dangerous for old people, but because it's habit-forming, it's considered a controlled substance, like narcotics. Other anti- anxiety drugs used occasionally with dementia patients are Valium and Xanax, like Ativan, they are all controlled substances. Someone had mentioned Trazodone. This is an old antidepressant which is used primarily as a non-addictive sleeping medicine. So, finding the right medicine to control some of the symptoms of patients with dementia, is very challenging. However, it's better to avoid using psychotropic medicines, because all of them affect the brain and aggravate the dementia. One has to accept the fact that medicine has its limitations and that not all of the problems that patients with dementia show, can be controlled. The disease will progressively continue to bring down the patient despite the best efforts to avoid it. Certain symptoms will remain. In all honesty, the medicines used for demented patients aren't aimed at helping the patient, but as a convenience for those people around them because those symptoms can be very annoying. Patients with dementia are disconnected in various degrees with the outside world. The symptoms don't bother them, they don't cause them any pain o suffering. However, the caregivers deserve some rest, and this can only be achieved if the patient gets sedated.
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VA2ndof4 Apr 2022
TChamp: Thank you for taking the time to clarify some of the confusion about the medications being used to "treat" dementia. I will admit that your earlier posts took me a little by surprise. After almost 10 years of watching my mom go from a beautiful, intelligent and proud woman to the helpless, childlike person she has become has been a very long and difficult journey. But with each challenge our love grew stronger as we handled each hurdle and figured out ways to work through them. I turn to this site on occasion because I know there are so many people here that are hurting and dealing with, or have dealt with, their own challanges and they get it. I know they will listen and help me get through whatever the issue is because they understand.

I want to thank everyone that read my post, shared their experiences, and offered their support, and to apologize to anyone that may have been offended by anything posted on this thread. This is a place where we can turn to find the support we need from people that understand. We have all felt the helplessness of watching a loved one suffer with this terrible disease or felt the toll it talkes on our families, friendships and resources.

When my mom is gone, I will know in my heart that I was there for her when she was most vulnerable and afraid. My memories will be bittersweet. I hope that we all find peace at the end of our journeys.
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It sounds like advanced stages of Alzheimer’s/Dementia. My Dad has it. Nothing helps. Some sleep medications seem to make it worse for him. He talks all day and all night in his sleep. I would suggest trying Ginseng for focus as long as there are not any interactions with her current medications. Ear plugs might help those around some.
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Ask the doctor to prescribe liquid lorazepam. That will get things under control. Halidol is a horrendous drug that should be taken off the market in my opinion.
I've had some clients over the years with Alzheimer's who babbled nonsense continually. The liquid lorazepam helped them a thousand times better than a pill did. You also have to try to just ignore the nonsense chattering. Try leaving a tv on for her. Sometimes that's a distraction and the babbling stops. If the chattering is going on at night, try not to let her sleep during the day. This will be hard but wake her up if she's dozing off. A dose of lorazepam at night and she'll go to sleep at night.
If the constant chattering is keeping he house up at night and no one is getting a break, you might want to consider a nursing home for her. Sometimes that's the only way. I wish you all the best.
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The constant, nonsense chatter is exhausting to listen to, striving to make sense of the babble. Maybe you could try giving her a baby doll and some clothes for it. Or a baby-sized teddy bear. One woman in the MC I worked in often spent all day with 3 dolls happily changing clothes, cuddling them and talking quietly to them, laughing often. She seemed very content and didn't bother other residents. Even ravaged by dementia she needed to care for and love her little ones, just like any good mother would. It was quite touching to see.
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My Mom hummed and she got so loud it effected the other residents. They called it an anxiety and its not good for them. Sorry, not sure what they gave her. Did calm her down but then she just sat. No scooting around in her WC. Daughter said it sort of quality over quantity thing. My Mom passed about 2 weeks after this.
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VA2ndof4 Apr 2022
That is really what it comes down to in the end. Quality over quantity. And that's a very hard decision to make for someone else. I am so grateful for this site and the support I find here, and to all of the caregivers that share their experiences. It helps to know we are not alone.
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@cignal,

I don't see you offering anything but criticism. At least TChamp and PeggySue are trying to give the OP some good advice. You're not.
Let me tell you something. As people here already know, I've been an in-home caregiver for a long time. Mostly to elderly people and can say with almost 25 years of experience that everything can't always be blamed on a UTI.
You know TChamp can be a tool sometimes with some of the things he says, but he's spot on about people being kept alive when they are nothing but a misery to themselves and everyone else. What a wretched life for so many elders when their bodies outlive them. I've had clients whose lives were being spoon-fed then pissing and crapping in their diapers. Then a caregiver cleans them up and repositions them. They have no life other than this, yet they still feel pain. If only a human being could be shown the same mercy as we can show an animal who is suffering.
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