We're trapped in a heartbreaking, recurring nightmare, a nightmare that's a product of mom's imagination: 'Mom's five young children were dropped off at the train station and she forgot to give them the tickets. They tried to find their way home through a dense forest and are lost, and all alone.'
She is frantic and upset, toggling between anger for why she can't call the police and overwhelming crying and sadness over their safety. It's been going on for several weeks now, all day, every day. We've tried every trick we know:
-having Skype calls with all her children to remind her they are grown and safe and sound
-holding her and reassuring her that the children are fine
-distracting her by doing things at home and then doing trips
-lies of love
Our most successful management has been to 'join her reality' and lie, telling her that I saw the kids this morning, that her best friend picked them all up at the station because they were going to an overnight church retreat to go tubing down the river (something we did alot as children). We tell her that she will see the kids in the morning. The next morning... we start again. Her last tests didn't show UTI, etc, but I will try again tomorrow.
I would be so grateful for any advice you all have. Specifically, I'm wondering:
-Do you have tricks we haven't tried?
-Do you have personal experience whereby someone MOVED PAST this over and over delusion and got beyond it? This would give us some hope that an end is possible. The thought of my mother's heartache at losing her five sweet babies is just so damn sad and depressing. Thank you.
Wishing you the best!
Your family sounds tremendous and I imagine your father is comforted by knowing he is surrounded and supported by such folks.
As with any form of dementia this may pass and she may be on to a new source of anxiety. You just kind gotta go with the flow.
By the way does she have any baby dolls? If she is focused on babies this might help her if she has a baby or more within her reach.
There was a lady at my mom's memory care home who always carried a stuffed kitty or a doll, and she was occupied all the time with them because "Well, you know, they're such a terrible lot of work," she tell me.
Bless her heart -- she died last Friday of Covid-19.
It's tough to see a parent so frightened by something we know isn't true. Sometimes I think I'm more upset by it than my mother.
My grandmother kept having recurring fits of indignation against her brother-in-law about the dissolution of a family business. She thinks her husband got a raw deal. This happened when my mom was a young adult. She has seen this BIL and his family decades since the incident. I talked her through a process of forgiveness. I remind her of the last time she saw them. Now, every time her memory goes there, I just remind her that she decided to forgive and the last time she saw them.
My daughter deals with depression and anxiety. She is fine now. But, she self-admitted herself to a psych unit once when she was having vivid dreams and thoughts of jumping off her apartment balcony or self harm. She never would do this but the thoughts were frightening her.
The thoughts are "real" to them and very frightening. Dr. Caroline Leaf has wonderful books about how the brain works. Talk them back to what they see around them. Remind them that people are ok. Then, divert the focus of their mind to something that engages them totally. The goal is to try to create a new, pleasant nerve/memory pathway and to have the disturbing one fall away from disuse. Admittedly, this is hard to do with Alzheimer's dementia where the brain does not hold onto new information easily.
About one and one-half years ago or so, my mom was fixated on some alarming events that she claims to have occurred being perpetrated by a family member; though, all family members knew those events our mom/grandma was claiming to have happened did not, since the person she accused lives 1,000 miles away from her and was not there as she claimed he was.
Anyway, these repeated stories about that family member went on for months, and I am not sure how my mom was able to let it go but she eventually did.
With my mom, it seems delusions were less for quite some time once she changed residence to memory care. Unfortunately and as might have been expected, the delusions and paranoia once again started up after about 9 months living at the residence. Very positively, the staff there has been working with my mom's family members, including spouse and me (great communication and honesty from the staff to our family!), medical, psychiatric staff that comes on site, etc., to help my mom deal with the increased paranoia and delusions, etc. So, IMO, the opportunity of living in a supportive community is a huge plus. Not so crazy about seeing my mom decline and have to be on sometimes risky psych meds, but it is not about me (of course).
Sweetie, I disagree with the "medical model" of dementia... sure there are scientific reasons for it but from another perspective ... these twilight world imaginings (to me) represent the spiritual/emotional transition to the next plane. Without being heavy or weird or religious... what I found was that my mom was working through her unresolved fears/guilt SYMBOLICALLY through these imagined events. Like a dream world where the story is fabricated, but the underlying pain is real.
My mom had enormous guilt for abandoning her parents in her home country when she fled to America at 20yo. She never saw her parents again.
I began to understand this and in a very matter of act way, I responded to her anxiety. I told her that her parents knew she was at the hospital (ALF) and they wanted her to stay there. They were concerned about the COVID and felt it was in everyone's best interest.
I told her she was a good daughter and her parents were happy with her.
She looked at me and said "you talked to them? You did that for me?" I said I did. and she said "You are such a good daughter". It was over until the next time. One great thing about dementia is you can use your rap over and over and they don't get tired of it.
So find the answer she likes best and use it each time. Try to remind her of the solution to the UNDERLYING fear/guilt. Perhaps that's "You were such a great mom" "you took care of so many kids so well" "everyone used to say what a great mom you were" etc
Remember, its not really about the lost kids, it's about her guilt and heightened sense of responsibility that still generates but through a scrambled memory. In some sense her instinctual defense of her brood is totally natural. Your solution to comfort her so creatively that those kids were picked up is perfect. It may need to be said everyday.
You could try a visual board to have pictures of the scene she is "seeing" and instead of it being so unpleasant, make it into a pleasant picture. If she is seeing her children lost in a forest, then find a picture of a nice cozy cottage and attach it to the board. Post a handwritten letter from the children stating they found the train tickets and are making their way home.
This anxiety and panic may be driven by a former event which may never leave her memory. Having a board with visuals may distract for awhile. She may even be able to help put it together with you. Then you will have a "tool" to use during the day when she is most upset. Give her the board and talk about it. Let her pick out things that comfort her such as a piece of clothing from the past, baby doll, picture of her with her children from years ago.
Good luck! This is not easy. She may be trying to process a former event and that could take awhile. Enjoy the good times and know you are helping her on her road home.
I knew someone who had similar behavior (her kids were going to get off the bus from school and she needed to be there for them). She would get in a full on panic attack about it multiple times a day. She could be redirected temporarily (your neighbor is meeting them at the bus today, etc) only to descend back into panic hour or even minutes later. She was in terrible pain over it. The staff felt helpless. Her family was adamantly anti-meds. She usually didn’t get anxious when family visited because it was such a disruption from her routine, she would be just sort of confused, but not anxious. Eventually, her family allowed the doc to prescribe. Once the right combo/dose was determined, her quality of life improved. She was able to engage with others, enjoy activities, much happier in general.
You are doing all you can it sounds to me, she may need the anxiety meds as well. I wish you peace and follow your continence . Yes sometimes you have to tell a few lies to keep going, nothing wrong with that.
You might also look at her meds and see if any cause nightmares or similar. Gabapentin created HUGE nightmare issues for my mom.
I say OP should stick with what works. As others suggested, run it by her doctor(s) - something she is taking might exacerbate things or she may need a mild dose of anti-anxiety medication, just to take the hard edge off.
-having Skype calls with all her children to remind her they are grown and safe and sound
-holding her and reassuring her that the children are fine
-distracting her by doing things at home and then doing trips
-lies of love"
Sometimes these work, but probably only in the earlier stages. If she is visualizing the "kids" as kids, then Skype calls won't really work, as the kids are no longer THOSE kids in her delusion. Reassuring is okay, but it doesn't really stop her concerns. Distractions can work, but often only for a while, until the scratch in the broken record comes around again.
The "join her reality" worked for you, so I would recommend sticking with that. It seems odd to have to play along and make stuff up, but playing along is usually all you can do because to them this is real! By playing along, you can help direct her thoughts to how the kids were "rescued" and are now having fun! Rinse and repeat.
My mother (97, into year 4 of MC) is living at about 40 years ago. I can peg this based on her asking about her mother (gone 40+ years) and comments made about her younger sister. The first time was 9 mo into her MC, asking if I could drop her off at Nana's. I had to quickly think, look at my watch, said it's a little late in the day and not on my way home, so maybe tomorrow? She bought that! I think leaving it open-ended like that can be a good thing - the door to possibility remains open, rather than slamming it in her face and telling her that her mother is gone. THAT would also have to be repeated each time. The fib is much better for her, as it leaves hope. The "truth" will be painful each and every time! Whenever she brings them up, I have to quickly think up some scenario. For instance, one time mom asked if I had seen or talked to her mother. I took a gamble and said they went to FL. It was winter then. She thought about it for a bit, and then said "they used to do that." I did luck out - I was worried she would be angry that they didn't ask her to go!
With dementia comes repetition. It was the first real inkling I got, when she started to repeat herself - questions, statements, whatever - in a matter of minutes. She often gets stuck on that "scratch", so I sometimes have to give the record a little nudge, to move on to the next scratch.
Your mother might cycle through this for a while and perhaps will move on to some other odd scenario later. There's no script for this and you just have to know it can happen and to be quick to "adjust" to the new normal! So long as your ability to join her reality and guide her to the happy ending works, do that!
She also has a stuffed kitty and a plant she likes to care for. Giving care makes her feel very nice. I have to keep a calendar next to the plant, or it will get too much water ;)