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My grandmother sometimes gets these "episodes": she will wake up very confused, try to call my grandfather or her mother (both of whom are dead) and get all upset and in a panic.


I came home from work at 9 PM to find her in this state crying hysterically. I tried to calm her down, tried calling my aunt who of course only criticized and yelled at me, saying I'm doing it all wrong. She said to me "you don't tell her everyone is dead when she's already upset!" and called me stupid. Okay, first of all, she's already figured out that people are dead, hence why she's crying hysterically. But I digress.


When grandma gets in this state of being really worked up, what do I do?


As of right now, I don't have any medications to give her that would kick in immediately. She just gets the one anti-anxiety/depressant combo pill. But what are some techniques I could use to calm her down?


I feel like this is totally beyond me.

Update: grandma ended up in the hospital last week with the worst UTI known to mankind. Somehow, she was sent home with the catheter in, still in hospital gown and all. She ripped out the catheter and ended up back in ER. Effin' geniuses! Thank goodness there was a dr appointment already scheduled the next day with her primary because I told him EVERYTHING that I have been through as a caregiver. He asked me how she got the UTI so bad and I said it was due to one disgusting behavior that she does. His response: "at the rate this is going, a facility will be inevitable". He recommended a neurologist and eval, which is in order.
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NeedHelpWithMom Jul 7, 2021
So sorry to hear about this situation. A facility is a wise choice when situations become overwhelming. Wishing you and your family all the best.
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My mother sometimes crys for her mother and gets upset occasionally. I calm her down by telling her her mother passed away years ago and she is at peace and not suffering any longer. I also tell her she will see her mom again someday. I give her a big hug and sit with her until she carms down. Everyone is different but this works for us. I also have low dose ativan on hand from her neurologist, if calming her does not help in that case it is usually a urinary tract infection which needs to be treated with antibiotics.
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Music reaches deep within the brain and has been used to calm people for years. Calming music eg harp/ piano is very calming. Deep breathing and meditation is calming. It sounds like you may come home to a crisis and need instant help so I recommend holding hands and instructing her to breathe deeply while you look into her eyes. Keep doing it and telling her to focus on her breath. Play soft music.
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Hello. I agree with lealonnie1 but would like to enlarge the idea with a suggestion of stuffed animals.

when the time comes i personally would prefer a stuffed cat or dog. There are ones now that bark or purr.
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Reply to Betsysue2002
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Kimmotion: I did see your update dated 4 days ago - I am just able to view your OP today. Your aunt needs to accept the responsibility that she signed on to do in Power of Attorney. I truly hope that you don't become homeless.
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Kimmotion Jul 7, 2021
Thank you- you and me both!
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Your aunt has some nerve speaking to you like that! She needs to come pick her mother up and deal with all of this and then you can point your finger at her and call her stupid (which you won't do, of course, knowing how bad it feels). Aggravates the snot out of me to hear such things when you are caring for grandma out of the goodness of your heart!

My mother does something similar when she's sundowning in the evenings around 8 pm; insists on calling her deceased sisters and mother b/c she 'needs to get out of' her Memory Care AL and thinks she can go stay with them. She'll ask me, 'are they still alive?' and I tell her no they're not mom, but they're all together in Heaven playing cards & drinking wine. You'll get to see them when it's your turn to go to Heaven and be reunited. THOSE are the words that calm her down and get her off the subject, in reality. There are no distractions that will get her to stop asking for their phone numbers when it's their numbers she's after. Soothing talk about where they're at is what she needs to hear.

Anti-anxiety meds are always a good idea to have on hand and will not make her 'comatose', that's a ridiculous statement. Medications are an excellent way to calm a person with dementia, period. No, they don't work instantly, like a hug and a chat will, but they DO calm the body down when it's all ramped up. "Side effects" from meds are nothing compared to scary dreams that are interfering with her sleep and with her LIFE! Only someone who's had a history of nightmares can attest to that; I suffered with them for 25 years and would have taken arsenic to be rid of them.

Don't leave grandma alone; it's not safe with dementia; she can get into all sorts of trouble. If your aunt won't help you with funds to get a sitter/caregiver to come in at night while you're gone, then your aunt needs to step up and care for her mother personally. Whether she 'disagrees' with managed care or not, some kind of care IS required at all times for a person with dementia, period.

Lots of people with dementia benefit from having a baby doll to care for (even men). You can try buying her an inexpensive one on eBay along with a swaddle blanket & see how she does with it. She can take the doll to bed with her and sleep with it, which may give her some comfort if she wakes in the night and feels like she needs to care for the 'baby'. When I worked in the MC last year, I can't tell you how many women (and a few men) carried around a doll and loved it to death; it brought them many hours of comfort day & night!

Wishing you the best of luck dealing with a difficult situation.
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Kimmotion Jul 7, 2021
Hi Lea, thank you for your response and I couldn't agree more- aunt is absolutely out of line. She has been told so many times that if she doesn't like the job I'm doing she should do it. Of course she said no (probably because she knows she can't even come close to measuring up to the care I provide!) But I digress. Grandma is now on meds for sundowning which are helping, thank goodness! Also, a mental eval is in order. Even the dr said that a facility at this rate is inevitable.
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There is no special thing that works one everyone.
But it is true, they don't need to be reminded that people are dead.

Just give a hug and soft words of comfort.

Ask what is wring and just listen and then let her know that everything will be alright.

Maybe she would like to keep a night light on.

Ask her if she had a bad dream. Meds can cause all kinds of side effects.
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This is a bad scene and I can only think that she needs a long release medication to calm her. I don't think there is any other way to do this.
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Here are a few things I’ve used through the years that sometimes helped her. Your main goal is distraction. 1. Try to get her thinking of something else. 2. Singing. I would sing some of her favorite hymns. It was so nice when she’d sing along. Neither of us has a pleasant singing voice, but it’s one of my favorite memories of her. 3. Take her outside. Once, I had to go out in the middle of a parking lot with her. I liken it to claustrophobia. She was better when she could see all around her. 4. Pick up the phone as if someone had called. Pretend you are talking to someone. My mother would never be “rude” while someone else was on the phone. 5. Pretend you heard the doorbell. My mom would kind of straighten herself up because she thought she was having company. 6. Tell her you need help. Like in the kitchen or laundry room. Best wishes Granddaughter for taking care of her.
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Who is with grandma when you are gone? She should not be left alone with a diagnosis of dementia. A caregiver could try to calm her before she gets to the hysterical state.
If you can place cameras so you can monitor grandma and if you see that she is getting upset you can call her and talk to her, that might keep hysteria at bay for a little while.
Possibly so me soothing music left on in her room at a very quiet level so if she wakes up she might be calmed by the music. (I would do only instrumental no voices as that might make her think there is someone in the house{but she should not be alone})
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If it is sleep time 10 pm - 6/7 am - talk to her doctor about her sleep problems: staying asleep and disturbing dreams. Her doctor may prescribe a sleep medication to help or may make a referral to a sleep specialist for evaluation and treatment.

Otherwise, you need to treat this as if she was having really vivid bad dreams. Turn on a small light. Reassure her that she is OK and loved. Hug her if she will let you. Offer to take her to bathroom and/or get her a drink of water. Offer to pray with or for her. Try distraction: read a short story or some non-upsetting news, play soft music, try guided imagery (tell her to close eyes while you describe a peaceful setting as she focuses on relaxing)... The goal is to help her relax and be able to fall back to sleep.
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Dementia of a LO is hard to cope with. Does she sleep alone? Can she share a bedroom with you ? Who is with her during the day before you get home? Does she have a pet that she can hug and take care of? Redirection probably will help and just like medication will not solve everything; unless you want her comatose.
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Again why are you the caregiver and not Aunt that obviously understand it all? Perhaps, I am too reasonable but will not desire to just do things while others who want to do them make it about me, vs. the person requiring it. You are obviously in over your head without support and doing this must be quite the family story. Well, stop calling Aunt she is not supporting you and you know why. Trying to incorporate someone when you were designated to do this, is not going to work. It sounds like bad blood already. Get help. Being a caregiver does not mean doing it alone, if the current medications not working call up doctor, State your compliance of appropriate use, and see if patient is lucid enough to talk to someone. Yes, via Medicare you can have sessions for mental health and most just get pills that do not work. Sounds like patient is grieving her losses and fears tomorrow, otherwise it would comfort her to want to join when she does feel presence of those she loss. Also, most do not ever think of spiritual prayers or getting assistance with this, unsure why we feel a journey will be taken and all we fear is how ill we might be. My saying for most are better to plan that you are not on Earth just for yourself, or you will be very alone and in grief when you find yourself less prepared. Money, fame, large homes all come down to poor memory, family feuds, and then it is repeated. Comfort her in asking about her best time with whom she misses the most. Stay away bringing her back, instead tell her to tell thar story over and over, how they met, what she wore, etc. She is afraid and pills do not remove this, talk therapy helps patient feel better, get her to record her life story, see if she recalls going to church earlier in her life. Ask if there was one place she wants to return to see where would it be? I was a Hospice counselor and it was most rewarding, this time is great if family would embrace it. Most times people just want your time and attention. Are her children deceased, if not Sounds like family rift will make her journey rough, and you will not be supported if this has anything to do with money. People stop using your money to destroy your families if you intend to not give then tell it to everyone while you are lucid, who says you must be dead to give this ugliness to someone you treasured while using or berating others., I intend to put it in writing so nothing to fight over, the poor know this, and despite poverty, they all help out because they "love" their family member.
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Seroquel meds
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You've received some good advice. I would reiterate playing music for her and redirect her attention to something pleasant. My Mom loves Glen Miller's genre of music and it makes her happy (used to ballroom dance). If there's any way to stop whatever triggers this, see if you can nip it in the bud before it goes into hysteria. Looking at old photos of your Grandma's siblings may remind her of happy times, then distract with something nice to eat.
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Just want to thank you all for your answers. I appreciate everyone taking the time to provide input.

So here's the thing: many people have said to put her in a facility, which I completely agree with. Unfortunately, legally I cannot do that since I am not POA or med proxy. That's up to my aunt, who refuses to do it. I don't agree with her at all on this, but there's nothing I can do about it besides disagree.

I'm trying to find a safe place to move to, it's definitely in the works. I live on Long Island NY where the cost of living has gotten sky high thanks to all the city people who fled NYC during the pandemic. And I really don't want to end up homeless, if it can be avoided. So right now, I am paring down my things, saving up for a new place and keeping my eyes peeled for somewhere better to live, a better paying job, etc.

As for what happens to grandma once I move out, that's up to my aunt. I'm legally not allowed to arrange for her care. My aunt wanted the responsiblity, well, now she's got to the job she signed up for.

In the meantime, it's not a bad idea to contact her doctor and let him know that these episodes are happening. I think I'll do that.

Caregiving is the hardest thing I have ever done in my life.
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NeedHelpWithMom Jun 25, 2021
Fantastic! Good luck with all of this!

You deserve your own life. Your grandmother is your aunt’s responsibility. You are not her slave.
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I hope that you don’t mind me being brutally honest with you. I don’t mean to be harsh. I am so sorry that you are struggling with this situation. I don’t want to say that you will be able to work through this though, because I truly do feel that this situation is beyond your capabilities.

Your profile states that you are working and she has dementia. I realize that you care deeply for her, just like you did for your grandfather, but there comes a time when it isn’t a good idea to care for a person that is as elderly as your grandmother in your home. No one questions the love that you have for her. It’s obvious how much you care.

She deserves to be looked after 24/7 in a facility with a professional staff. You can be her advocate and visit her. Then a medical team will know how to treat her episodes concerning her anxiety over her deceased family.

Why are you doing the caregiving? Her children should be the ones to handle their mom and if it isn’t possible for them to do so, they should place her in a facility.

Quite frankly, I am puzzled by your profile. You claim that this experience is making you stronger. I’m sorry, but I don’t believe that is the case. It’s a huge responsibility and a burden on you to care for her. Do you have any help or are you flying solo?

I am afraid that this is becoming too much for you and even though I believe that you are trying your best, it simply isn’t adequate care for your beloved grandmother.

I know that you believe that you are strong by holding on. The real test of strength is not about holding on, but loving her enough to let go. I know how hard it is to let go. I struggled with letting my mom go. I cared for her for 15 years in my home and it nearly killed me. I don’t want you to experience what I did. My mom died in a hospice house free from anxiety and pain. I am extremely grateful to her hospice team. Allow your grandmother to have the help that she requires.

As I said, I don’t wish to be harsh, I only wish to be honest with you and tell you that your situation with caring for your grandmother isn’t working out and will probably never work out in your favor or hers.

Call Council on Aging for a needs assessment. Call a social worker to help guide you in planning for her future care in a facility.

Be at peace knowing that you have gone above and beyond for her. Please accept that you have done all that you possibly can and let go of the reigns. She will adjust to her new surroundings. She will receive proper care.

I will keep you and your grandmother in my thoughts. Wishing you peace as you navigate your way through this difficult time in your life. Take care.
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jacobsonbob Jun 28, 2021
If the process is supposed to "make one stronger", I would say Kim has already passed the course and it's time for the lessons to end!
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Posted my suggestions for getting out of this situation in your other post:

https://www.agingcare.com/questions/burnt-out-and-want-out-yes-i-know-i-need-to-leave-does-anyone-have-any-words-of-encouragement-467717.htm?orderby=oldest

Hope you've made some progress in finding a new place to live.

Obviously calling your aunt should come off your "to-do" list when grandma is upset. That person is not only useless, but she's harmful.

One suggestion: if this is something new she is experiencing, has she been tested for UTI? You can start with a home test, but those and the dip stick test docs use don't always catch them. It may need to be cultured. While trying to work out how to calm her, I would get this ball rolling, at least to rule out UTI. They can really wreak havoc on older people, esp those with dementia.

IF the UTI test is negative, it might be best if you can ask her doctor about another medication might work better. The only time my mother needed something was for UTI induced sun-downing. She was totally out of control every day later afternoon into the evening. Next morning, it was like nothing happened!

Lorazepam was Rxed along with antibiotic. She only got the med in the afternoon, before any sun-downing began, to ward off the episodes. I'd been there several times when she was given the medication. It worked first time, every time and in about 15-20 minutes. I stayed several times into the later evening and she wasn't "doped" up. She didn't have to wean off it either.

That said, medications don't always work the same for every person. It may take some trial and error to find the right one for her.

See if you can get her to the doc for a urine culture, and blood work (another forum member's mother was acting oddly, but didn't have a UTI. She DID, however, have an infection in her mouth! Once treated, all was okay again.) If nothing shows up in the urine or blood (could be infection, which might increase white blood cell count, or it could be an imbalance of some kind), doc might be able to Rx something else.

Until you can get this resolved, try to reassure her as best you can. Distractions sometimes help - snack, tea, even redirecting her thoughts to days gone by, asking about her childhood, parents, etc. Be as loving and comforting as you can and forget about auntie... I might even stop paying this "rent" - if you have no care-giver or rental agreement, what's she going to do about it? She can't evict you and you plan to leave anyway, so....

Don't forget to have another chat with the legal clinic about ensuring grandma will get the proper care once you are ready to go!!!
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Kimmotion Jun 25, 2021
Still trying to find someplace to live. The rent around here is ridiculous- $700+ for just a room, if lucky. A friend offered a room to me, but I'm super reluctant to take it because she also has some mental health issues and I'd just wind up in the same scenario. So that's going to be a last resort to homelessness. In the meantime I'm paring down my belongings to just what I really need and want, and keeping my eyes peeled for a room I can afford.
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It is so good of you to care for GM. I agree, your GM should not be left alone. Seek adult daycare or have aids come in while you work or a combination. These get paid for from GM funds. POA should be making these arrangements. The POA should also let GM's dr know that GM is having episodes and needs to be evaluated.

Please do not become GM's fulltime caregiver - you need to earn money to take care of your own old age.

Validate your GM's feelings - "you know she's sad and afraid - you are there for her and she is safe." Ask her what makes her sad. Depending on where she is in her mind she may no longer remember her mother or husband are dead - if she says they aren't answering the phone just tell her they must be away and can't come to the phone. Reassure her that everything is ok. Prepare her a snack and put on her favorite music; sing to her; read to her. If you can try and figure out where she is - see if you can have her tell you what is going on in her life - where does she live; what decade she is visiting?

You are such a good granddaughter and GM is lucky to have you. I pray that you are blessed with peace, grace, love and joy.
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Kimmotion Jun 25, 2021
Thank you, and I agree with you about the job thing. Quitting a job to take up caregiving full time is one of the worst things you can do. Caregiving will end at some point, and by the time you get to it, you've been too long out of the workforce and it's very hard to get back in. Jobs are not easy to come by, especially good ones. I've been looking for something that pays better, and it's been difficult because everyone left NYC and is now out here.

It seems that when she has these episodes, she's back in the 70's/80's because she asks me where Nana (her mom) is. So it's gotta be that decade.

*sigh* she really needs to go into a nursing home... my aunt won't do it, probably doesn't want to lose inheritance... I have to get out of this, I can't handle it anymore.
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According to past posts, you are 38. Your grandmother is 94. You were bullied into this caregiving situation by your POA aunt to preserve her inheritance.

How are things going in finding a place of your own? Are you still doing that?
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jacobsonbob Jun 28, 2021
CTTN55--From the description of this aunt's behavior, if I had typed this, the letter "A" would have been hit by accident...
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"tried calling my aunt who of course only criticized and yelled at me, saying I'm doing it all wrong."

Then why isn't your Aunt caring for her? Are you living in Grandmom's home? If Grandmom is having these types of episodes she should not be left alone at all. She is now 24/7 care. I don't expect you to quit your job and please don't. Her responsibility is your Aunts. If she does not want to care for her Mom, thats OK, but she need to set up care in the home or place Mom in a facility. IMO when there are children, the care of a grandparent should not fall on the shoulders of a grandchild. Now if your grands raised you that may be a different story but your Aunt should still be helping.
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Kimmotion Jun 25, 2021
Yes, I'm living with grandma. That's what I said to aunt on numerous occasions: "if you're so unhappy with the job I'm doing as caregiver, why don't you move in here and do it?"

Don't worry, I refuse to give up my job. I work in a library and love it.

Grandma did sort of raise me. Not entirely, but she helped a lot. Still, that
doesn't give anyone the right to take advantage of me. My aunt should really be doing what I'm doing, she's the daughter who's running the show and loves to tell me what a lousy job I do. Smh.
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You may never know why g'ma is crying. It may not be that she realizes her relatives are gone. We don't know what is going on in the mind of someone with dementia. Has she been clinically diagnosed with dementia? I agree with Barb that her dr should know about this. In the meantime, try to divert her by recognizing and validating her grief and suggesting you both go for a walk, get a cup of tea, have a snack, etc. You imply she's living alone, she shouldn't be. Her confusion and delusions are signs of detached reality, which can lead to inability to take care of herself, and unsafe behavior. Have you viewed Teepa Snow videos on YouTube or read Surviving Alzheimer's? Both are specifically meant to help dementia caregivers.

You might want to start to consider a care facility. And, yes, this is the most challenging thing you've ever done. “I am certainly coming out of it a stronger, wiser person in the end”, tells me of your optimism , your resilience, and your strength to endure this journey of caregiving. I applaud you, Kimmotion
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Kim, I think you need to talk to gma's doctor about these episodes. She may need more, or different, medication.

Is grandma alone all day? Is she safe, do you think? Are there adult daycares near you where she could spend some of the time you are at work?

Does gma find music soothing? Maybe songs from her youth and early adulthood, or classical music can be calming.
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