I need to vent about my grandmother and an endless cycle.....

My 74 years old wife often says she needs to go home. She may pick up some small things like a magazine page when she says this but she hasn't ever packed clothes.

In the evening, I tell we can't go now because it is dark outside and I cannot drive in the dark. I also let her know that we are home. That works sometimes.

Hospice care is specialized support for individuals with terminal illnesses, including dementia. It focuses on providing comfort and enhancing the quality of life during the final stages of the disease. The goal is to manage pain and other symptoms while addressing emotional and spiritual needs. It is not necessarily for the terminal ill.

My wife was placed on hospice. I didn't realize that hospice wasn't only for terminal cases. Hospice allows for a nurse to come in a couple of times a week to check on her. I also get a companion ("babysitter") a couple of times a week that allows me to gt out of the apartment for 2 or 3 hours.

welcome. Sorry about your grandmother. For people with dementia, home is a feeling, not a physical place. It’s caused by anxiety. Medication will help her anxiety. Talk to her doctor. Remember that you can’t reason with someone whose reasoner is broken. Try fibbing. Tell her you’ll go in a few days. Some try driving around and returning home and that works temporarily.

First, please don't be offended if you already know these things.. I am a caregiver and learning more every day.. So - make sure you have all the car keys, as it is clear she can't be driving. I love the idea posted above about packing some things and leaving them and telling her that you're going "in a few days".. I would definitely try that. From what my mom says, it's clear she remembers things farther back than I think.. so your grandmother may be thinking of a home she had BEFORE this one. or maybe even before that.. So the one she is in isn't the right one. That is a harder thing to manage, but putting off the 'trip' to visit it is still worth a try. My mom has decided she likes puzzle books. There are many on Amazon, large print, adult, memory help books with word searches, mazes, "find the differences" pictures, etc. Sometimes she gets completely into them and can't hear me when I ask her questions.. I would try one if you can to kind of direct that energy. As far as acting like a 10 yr old.. My mom covers her ears and closes her eyes like a 5 yr old.. I have found that just agreeing with her about most things helps.. because she has to be right.. Her memory is infallible even though she may say she 'can't remember anything' one second.. the next second, her brain has made up something outlandish and it's absolutely the truth!

This illness is one horrible thing, that's for sure.. Try to laugh at things when you can.. I try to laugh all the time.. mainly so I don't scream or cry! But today I found this site and I realize I'm not alone in this..❤️

Four months of waking up every single morning to bags packed and a knock on your door asking to go home, when she is home, is the kind of exhausting that doesn't have a bottom to it, and I want you to know that everything you're describing is real, valid, and genuinely hard. The "going home" behavior is one of the most common and most heartbreaking parts of dementia, and it almost never responds to logic or proof, which means showing her the address on the house or pointing to her belongings is not going to land the way it would with anyone else, not because you're doing it wrong but because that part of her brain simply can't hold the information anymore. Being called a liar and accused of plotting against her when you're the one showing up every single day, alone, while her son can't be there, is a particular kind of painful that sits differently than just being tired, and it makes complete sense that you're burned out. At 39, being the sole caregiver for someone with advanced dementia behaviors, with no backup and no break, is more than one person was designed to carry by themselves.

Please don't wait until you're completely empty to ask for outside help, whether that's a geriatric care manager, a local dementia support line, or even respite care for a few hours a week, because you matter in this equation too, not just her.

I hope these references can help you:
https://hopebridge.care/dementia-delusions-and-paranoia-when-nothing-makes-sense/
https://en.wikipedia.org/wiki/Dementia
https://www.psychologytoday.com/us/blog/connection-and-coping/202511/when-a-loved-one-with-dementia-becomes-paranoid

Are you responding to a post from March?

Hi, Sean. Let me just say, I respect you doing all this for your grandma. I'm 26 and I'm dealing with a very similar thing. Reading your comment was like reading a day in my life taking care of my grandma too. She's 83 and was diagnosed with Alzheimer's and dementia 4 years ago. It's hard.

As far as the daily packing of her things, it's a phase. Sometimes a very long one. My grandma used to do it every day as well towards the beginning of her diagnosis. In trash bags too. Absolutely everything she owns; clothes, photo albums, stuffed animals, jewelry, etc. Fortunately, I took away her car years ago (which was a whole other problem with her) so I never really struggled with her loading things into the car itself... Eventually, she stopped doing it as much. Every once in a while it comes back, though. For your sake, it'll be good to be aware that if she's just started (4 months ago) it will probably keep going for a while and will decrease eventually but it will never completely go away anymore.

Just like your grandma, mine also says she wants to "go home". Every. Single. Day. She's been with me for 4 years. Occasionally she'll also say she needs to "check on the house"... Which sometimes I believe to be her old apartment... But, over time I've realized sometimes home isn't the obvious place. Your grandma must definitely feel safe and recognizes her surroundings at home with you, enough to keep her nervous system from freaking out with confusion. BUT from my experience with my grandma, it's almost like they can live in 2 realities at once.

She can feel safe and "at home" with you in the home you've shared for years, and also be experiencing a whole other mental "reality" where it's almost like she's living 10, 20, 30, or more years in the past. It could be in a completely different city, home, with deceased loved ones magically resurfacing in her memory. Sometimes it's all mixed into one moment. For example, for the past month, she has consistently referred to me as her sister and has asked me about how her parents are doing with the shop they recently opened. I'd be so lucky to have great-grandparents that have lived so long and are still thriving :) I can't reason with her that I'm not her sister because her face goes blank with confusion or she thinks I'm lying to her, which only agitates her... So I go along as the sister and tell her our "parents' shop is doing great"... The same goes for when she asks me to "go home". She's lived in so many places that it's hard to know which place she's referring to. Sometimes I'll start naming different cities hoping she'll tell me which one is the "right" one, so I can locate where she is in her mental timeline that day.

My best recommendation is to try to re-direct her attention to something else during those "let's go home" moments. Not a random, "look, there's a bird" that she'll easily identify as you ignoring her request but more like a reasonable task that needs to be done in the present moment before anything else can happen. Often, those kinds of distractions are enough to change the conversation and fill their headspace with something else. Chances are, she'll come back around to it later but sometimes they don't. Ultimately, it's about getting through things one moment at a time with them so take it as a win if she momentarily forgets about going home.

Irritability is a common thing, though, especially if she's not really aware of her condition. I imagine your grandma, much like mine, feels both like she's perfectly normal yet extremely frustrated about why she can't remember simple things. Add to it that sometimes they can pick up on your hyper-vigilance of them, they definitely know something's off... They just don't know it's them that's changing. Caring full-time for someone with dementia is exhausting. The daily packing of her things, the let's "go home", the showing her she's home and not being believed, it all takes a toll on your own well-being and even patience eventually. As much as we try to hide it, they're our grandmothers, of course they know when you're tired, sad, stressed, etc, even if you think she's mentally elsewhere. I think they interpret our micro facial expressions and reactions to certain things over time and it leaves them with a general impression of them being a burden to you. Hence, the "you're planning to get rid of me".

It's not easy and, unfortunately, it only gets harder. Thus, I definitely recommend that you find help. If other family members genuinely can't help out, I would advise you to find a doctor, senior care nurse, adult day care for people with these types of diseases, or even a specialized-care nursing home at some point. You need to be able to take breaks and breathe from all this, regularly. Otherwise, you're going to run yourself to the ground and that doesn't help anyone. If you don't do it for you, think that you can't care for her if you're running on 1%. All the options require some sort of sacrifice, which at some point, can feel unfair, but it is what it is and at some point, you won't have regrets about taking care of her. BUT you can take better care of yourself while you do it.

You're the first forum comment I come across that I've properly related to, so thank you for that.
Wishing you lots of patience and peace of mind. Stay strong.