Searching for Ideas To Calm my Grandmother during extreme Confused Episodes

Leighcheri333

(For the specific question I’m hoping to find advice for, please skip over the first paragraph that provides a bit of background leading to why I am seeking help). 

 My grandma is my favorite person in the world. She was diagnosed with Alzheimer’s years after her first signs and symptoms because her family (her husband and 3 kids) have their own issues I won’t get into. She needed 24/7 care at least three years ago and has had multiple hospitalizations, including broken bones and plastic surgeries, injured herself due to hallucinations and was even found wondering the streets early morning hours by neighbors walking home from the train. My mom finally fought for and won health proxy last year and since then there has been 24/7 care. However, after my recent visit I noticed how accelerated her decline has become. The aides are wonderful with her, but her memory, confusion and frustration and shockingly her sudden fierce defiance, have caused her more mental anguish than I can allow so I took a year away from my passion, teaching, to move in with my grandma and help with her bad days and episodes.

I don’t know what stage she is in, but most days she can’t remember the last 5 minutes, most of her life’s memories, most people she knew well, always thinks people that have psssed are coming over and has not noticed her husband passed 6 months ago. When I write that out, I realize she could be described as mostly confused but still enjoying most of the moments of her day because we have learned how to manage this and she has such an optimistic outlook and sweet disposition it’s rare for her to be anything but happy. She finally received 24/7 care last year and the care givers are wonderful, but after recent visits have noticed she is experiencing more anxiety-driven confusion, and even anger that only I can help with. So I moved in with her and have been helping the aids but recently she is having episodes where she is so far removed from reality, AND IS AWARE OF IT, which is heart breaking. My strategies have been redirecting, reassuring she is okay, fibleting (I think that’s a term I saw on here) and taking her to the backyard where we just hold hands as long as she needs. The past few episodes have been drastically different in nature and none of that works. I am desperate for ideas on how to bring her calm (not even reality) when she is disoriented, mentally anguished and is aware something is wrong but can’t verbalize it. All she says is, “Liz please help me I’m so confused,” over and over. Twice it’s turned to rage and kicking people out of her house which is obviously a safety issue. 

It’s 6:00 am right now and I’m making her a scrap book of family because she has always loved and prioritized family all her life. I want to write a note like, “I know you are confused right now but I promise that you’re safe and okay and your mind is just playing tricks on you.” 

Thoughts on the scrapbook? Better wording for the note? Any other ideas to bring someone out of a really bad episode than I mentioned above?

I gave up my passion for teaching in the inner city this year to dedicate my time to providing her comfort and figuring out how to make her life as happy and enjoyable as possible while she is still able to find the joy. Which she DEFINITELY does still on a daily basis but these moments are horrible and heartbreaking and getting worse

I know where this is going, but just really need someone to hear my prayer for ideas that can take away some of the confusion and pain in these moments. Literally anything suggestions to make her life better is deeply and genuinely so very much appreciated. 

Thanks for listening and to those who offer insights,

-A loving granddaughter with the time to dedicate to make her days easier and ensure she continues to find joy in life as long as she can 

May flowers

Welcome to the board, but sorry for the reason you are here! Your grandmother is blessed to have such a caring granddaughter.

Often when a PWD experiences a sudden change, like increased agitation or delirium, it is the result of a urinary tract infection. They can have almost no physical symptoms of a UTI, but significant and sudden behavioral changes. It’s always a good idea to ask the doc to rule that out to do a urine culture (or any other physical ailment, for my FIL constipation also sends him into a tailspin).

If there are no physical causes, sundowning is another consideration and is also common in PWDs. You did not mention medication, but there are medications can help. Often it is a trial and error to find what works for your LO and it is a good idea to work with a good Geri-psych doctor to help determine the right fit for her. For example, for my FILs agitation, anti depressants and anti anxiety meds only made things worse but an anti psychotic works, and does not knock him out or make him unsteady. I held off on meds for a long time, but I realized living with that kind of agitation was no life for him and was very hard on us.

The scrapbook is a lovely idea. As for the note, for me personally, I would not mention anything about her illness to her. It is hard for them to process and even if they can it can be depressing and sometimes even upset them more (many PWD don’t believe they have dementia). I think I would just leave it at a simple “I love you” without any reference to her condition. That’s just my thoughts.

(((Hugs)))

harshedbuzz

Hi and welcome. I am sorry for the reason you are here, but glad you found the group.

Some random thoughts. Any rapid onset on new behaviors, needs to be checked out. Things like silent UTIs can really change how a PWD presents in terms of skills, confusion, behaviors, etc. Here PCP may be able to order the test and allow you to collect a specimen at home and drop off at a lab. Be sure to ask for the sample to be cultured to make sure she's given the best antibiotics for whatever she has.

If this is not a cause of her distress, it might be time to add a geriatric psychiatrist for psychoactive medication that could help relieve her of her delusions and the anxiety they are causing. 

A couple caveats on the scrapbook--

It is a thoughtful and lovely idea. I hope she enjoys it and that it gives you something pleasant to share as an activity. 

But don't be dispirited if she doesn't react in the way you hope. Sometimes PWD don't recognize people from their past, are apathetic towards them of have false memories about them that can be triggering. 

I bought dad a digital frame and loaded it with pictures of his favorite people. He didn't engage with it much at all. He did seem to enjoy looking at pictures of himself as a young man, but sometimes he'd complain that I'd left certain people out (true for some but not for most). He complained that there were no recent pictures of my sister; she died in 1994. And he accused me of not including my younger niece; she was not in a good place and had been estranged from most of the family for over 10 years.

He got stuck on this. I was able to grab an older picture where she didn't look like a drug addict and loaded it into the queue along with a picture of his urologist (who mom thought was "very cute") as a joke. A day or so later, I showed dad the new picture of my niece and he smiled broadly saying "There's Granddaughter Name" and then the picture switched to the handsome young urologist and dad said "And there's "Harshed's Son Name". FTR, the urologist's parents were born in Japan and my kid looks like Ed Sheeren. 

I would also caution you to use copies for the book. A number of members here have reported their PWD destroying original copies of important photographs and even throwing them away. 

I hope she loves it.

HB

robinja

One thing you could possibly try is music. It did not always work for my mother, but sometimes playing music or even singing together would distract her and calm her. You’ll likely have the best success with music from her youth. For my mom, I played Elvis, Hank Williams, Patsy Cline, etc., and old hymns (Amazing Grace, Old Rugged Cross, I’ll Fly Away, for example). It’s amazing that they can often remember the words when they can’t remember what they ate 5 minutes ago.

HollyBerry

mmy mom would call me in the middle of the night,  all in a tizzy (her words!) because of whatever was going through her head, real or imagined.  I checked with her MD then carefully suggested there might be something she could take to help her calm down and worry less. She started Lexapro, and it helped then they raised the dose later. I think there was also something king she could ask for if she still got "in a tizzy" and couldn't calm herself.  Maybe talk to your mom's providers and see if there's something you can keep on hand for the times she needs it.

I liked the suggestion of music. Can you tell stories of times you spent together?  Repeat stories she told you about her life?  Be prepared for her to tell you completely new versions or insist you have it all wrong   My mom "remembered " some doozies!

HollyBerry

Hi again - sorry about all the phone-related typos in my last post.  I was thinking about other things they did for my mom toward the end to comfort her when she was having a hard time.  She loved this one very soft blanket/throw and they would wrap her up in that, sort of tightly, so she could feel tucked-in and feel it against her skin.  They would put the tv on a station that showed images of trees and lakes and things with calming music.  There was an activity person there who was into essential oils and I know they had diffusers they would bring to people's rooms from time to time. 

My brother is a big believer in the power of touch.  I'm not a touchy person by nature but I appreciate how it can work with kids and I wonder if it would be useful for your grandmother as well.  Does she like to have her hair done?  nails painted?  not sure those would work in the moment when she's having a hard time, but maybe as calming things you can do together that involve positive touch?  A small fluffy dog or cat?  My mom loved one of our little dogs and I could watch her relax as she patted her - again, not a solution in the moment but something she might enjoy if she's had dogs or cats in the past.  Sometimes the ADRC, senior center or public library will be able to refer you to someone with a service animal who will do home visits or meetups in a park or public space.

One more thought:  my mom lost all perspective on time and also lost the memory of some huge chunks of her life.  What she did remember became a big mashup with tv and the daily rhythm of AL.  I learned to be very much in the moment.  I would listen to her stories and then bring her back to here-and-now.  I asked her to help me try to knit, I asked her to help me play the piano - both were things she had taught me as a child, so even if she didn't really remember how to do them, I could make it seem like she was teaching me something new.  If we stayed in the moment, she didn't start to get worried about the fact that she didn't know where she was, where my brother was, when he was coming, and all the other things that ramped up her anxiety. And medication did help a lot.  Do contact her provider and let them know the episodes have changed and that you both need help in managing them.