I am primary caregiver for my 81 year old mother who has dementia that developed shortly after my dad passed away in 2014. I moved in with my parents in 2013 to help care for dad. My Dad had cancer and only lived 5 months after diagnosis. He and mother were married for almost 50 years. Daddy passed away 43 days before their 50th wedding anniversary. Mother did not show any signs of dementia until after Daddy died, and then it was like a switch flipped and all of a sudden she just wasn't herself anymore. My brother or myself are always with her, she is never alone. We live in the same house she has lived in with my dad since 1989. My brother lives next door and helps me care for her. Her dementia has gotten much worse in the last few months. Sometimes she does not know that we are her children, she doesn't remember anything about our childhood or our dad. She seems to only remember her parents and brothers and sisters. Mother had 7 brothers and 5 sisters. Only 4 brothers and one sister are living now. When her sister comes to visit, mother doesn't want her to leave. For the last three days, in the afternoon around 4pm to 5pm, she has said told us that she is not feeling well and would like to call her mother and daddy to come get her and take her home. She even said that to my aunt, when she came over yesterday and wanted her to take her home to her Mama and Daddy. We tried to gently tell her that we cannot do that. But she says that she knows that they are alive and that they love her. She will cry and then ask for her brother to come get her. We have tried to explain that her parents are in Heaven with Jesus and that we can't call them or go there. But she does not understand. It's like talking to a little child. It is heartbreaking to think that she believes that we are keeping her away from her family and that she does not really know that we are her children. She knows that we love her and take good care of her, but she just wants to go back to her home. What can we do to soothe her when she gets upset like this? Has anyone else had this issue?
It is far better to see a smile then see someone grieve over and over, so I told my Mom that her parents were visiting the old country, which they routinely did. I also did the "therapeutic fibs" whenever Mom asked to see her siblings all of whom had already passed on.
My Dad also had "sundowning dementia", where he would mentally climb into his time machine and go back to the 1940's. He would telephone me saying he wouldn't be coming home from work because he had missed the last bus, so he will stay at the hotel [which was his Memory Care room]. I just played along as I didn't want to frighten him.
We have to find what works best.
You've described my own mother, who has lived with me for over 5 years now. When my twin brother passed away in 2019, the dementia began to manifest, followed by a fall with hip fracture and her PCP diagnosed her in early 2020.
My mother was the middle of 8 children and she still thinks that her siblings and parents are alive and she also wants to go home. She'll say that she just talked to her mother and her daddy is coming to get her and take her home.
She'll sometimes ask me to call and will recite an ancient phone number to call.
I always always go along with it - mainly because it comforts her in the moment. And in a few minutes the moment is gone and she didn't get upset because I tried to reorient her to reality.
My mother at times has thought that I was one of her sisters, which is fine with me.
I tell her that she's going to see her parents soon - maybe tomorrow - and that also satisfies her.
It's hard and sad. I hate to see my mother being homesick for her parents and not being able to produce them for her. So whatever you can say to comfort her is best.
Peace.
Instead of keep trying to convince your mom that her parents are dead(which you'll never do)try telling her that you'll call them when you get a chance to come get her and then redirect her with a snack, ice-cream or whatever. Or tell her that they're busy right now, but will be by later. Those are called therapeutic lies or as we like to call them in my support group, "fiblets." And of course just reinforce that yes your parents do love you very much.
You have to now live in her world and not your own and your life and hers will be much happier if you just go along with whatever she is saying instead of trying to tell her she's wrong. That's a battle you'll never win.
I also would bet that Mom was showing signs of dementia when Dad was alive. In early stages some are able to "showtime".
I learned early on to enter her world and not try to explain or make her understand anything. I'd always ask about Dan, and if she got upset that he wasn't there, I told her he was at work or football practice to calm her down. It always worked.
Every time you tell Mom her parents are dead is the first time she's hearing that. Stop doing that to her -- it's cruel.
Give yourself a break by not trying to make your mother understand reality. There's no point, and you'll actually feel better if you let her take the lead while you fill in the blanks with therapeutic lies.
”He’s at work.”
”He had to go to the store.”
”He’s busy.”
She’d still ask over and over but these answers kept her from getting upset. It may feel like you’re lying, but in this case you are preventing more pain for her. Out of love.
Sometimes music therapy helps or cradling a doll, or stuffed animal to help sooth them. You're right, you no longer are her daughter in those episodes, but you are someone that she relates to that is in her circle of comfort and care.
It's difficult to experience that the Mother that you once had is technically gone, and you need to understand her 'new normal' world now...which is nothing like it was a few hours ago, yesterday, last week, or month, or year ago. All you can do is keep her comfortable and find things for her to do, if possible.
If you (or your brother) have Power of Attorney of health..speak with her doctor and ask for help. Contact your Alzheimer's association and reach out to them..they can be a huge resource to you and your brother. Watch some Teepa Snow YouTube videos..she has wonderful training videos that could also help.
You're not alone, and this journey is full of twists and turns that may catch you off guard. The more tools you have in your arsenal, to help address different scenarios that you are dealing with now, or will in the future, the better prepared you'll both be. Take care of yourselves. God bless you for being there for her, it is a huge challenge, but the ultimate gift of love. <3
Call mom's PCP and tell him she's Sundowning hard. Google the word and see what steps you can take in house to help her symptoms. One poster here swears by the Richway Biomat Mini heating pad w amethyst crystals in it. She'd lie down on the mat and hopefully calm down and relax. They are terribly expensive but CAN be rented on a trial basis.
https://biomatdirect.com/
I'm sorry you and mom are dealing with such a horrible experience. My heart hurts for you bc I know how helpless we feel to watch this disease destroy who our mother's are at their very core. Hospice, when they did accept mom, did a fantastic job of helping her stay comfortable and as non agitated as possible w/o knocking her out. Sometimes that's the most compassionate thing to do for them. I don't suggest you repeat the heaven story to mom bc she will just keep reliving that "new" death info each time. Just tell her her parents aren't available at the moment, etc. People here who advocate "honesty" at all times are truly clueless about dementia and attempting to apply normal moral rules to a disease of the brain. Senseless. The only goal here is to keep mom relaxed and content at any cost.
Best of luck.
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