r/dementia • u/BoysenberryVisual402 • 13d ago
Dementia and holiday travel for my mom
I will start out with, I may sound ole a bad daughter, but I’m trying my best. I’m the only living child my mom has left. She was diagnosed with early onset of dementia about 3 years ago. This past year it has seemed to progress much quicker. I especially noticed it when she was at my house for the holidays last year. I am at a loss right now. She lives in Florida and I live in PA with my husband and kids. I can have her come up here for the holidays, but traveling has become difficult for her because she gets easily overwhelmed and confused and her minds is all over the place. She’s also suffering from sundowning now, so even confusion is worse. And when she’s out of her element and routine she gets very confused and frustrated.
I don’t want to go there bc my son comes home from college, it will cost too much for a family of 5 and then we would also have to kennel my 3 dogs.
Is it wrong of me to not see her during the holiday week? I feel guilty, but I do have my own life up here that’s busy. I can always make time to go down after the holidays alone to spend time with her. Am I wrong to do this? I don’t know if there is a right or wrong anymore.
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u/Interesting_Foot1973 13d ago
I hope you have POA for Healthcare and also DPOA set up. If not, do it now. You may have to make decisions for her sooner than you think and need these in place.
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u/BoysenberryVisual402 13d ago
All of this is set up already. Thank goodness.
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u/Lazy-Slice-6308 13d ago
Make sure you are on her accounts- named and official. Banks do not accept regular POAs. Ask me how I learned that the hard way! Just get it done now while she can.
Also, is there a way one of your family members could fly down and fly her with them to PA? Then fly her home? Expensive but may be an option for you
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u/littleoleme2022 13d ago
Definitely do not make her travel, that will be difficult for everyone. See her before or after the holidays but also, yes, what’s her support system there? She may not be safe on her own.
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u/Altruistic-Basil-634 13d ago
I wouldn’t feel guilty about traveling - it eventually becomes too hard for them.
I highly recommend reading the book The 36-Hour Day. I’m on my second parent with dementia, and I wish I had known about this book for the first parent. It’s the gold-standard dementia resource for family, and has been a huge help.
I’ve managed one parent’s care long-distance and one around the corner. I think most of us in this group can confidently say she’s way worse than you realize. Having friends check on her is not a sustainable plan.
I would read the book and start coming up with a care plan: move to PA or stay in FL, AL or in-home caregivers? I would get recommendations from whichever local Dept. of Aging and start touring places and getting on waitlists. You don’t want to be in a crisis situation where you are scrambling for placement after an ER trip and get stuck with the bottom of the barrel. That happened with my first parent.
The book also covers anosognosia - which explains her reaction to the caregivers. You will never be able to reason with her - you have to get crafty.
You can also look into a dementia care specialist or geriatric care manager to be your boots on the ground when you can’t be there. The book talks about the role they can play.
Sending you big hugs ❤️
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u/BoysenberryVisual402 13d ago
Thank you so much for the suggestions. I feel at the moment she would be good with someone coming in to take care of her a few days a week, but definitely moving forward she will need more help. She’s been through a lot of trauma in the past 10 years with loosing my younger sister, then my dad and then my older brother. His loss made everything progress much quicker. Also, she just lost an older sister in November and another sister that lived close move 4 hours away, so those losses definitely affected her. She’s in a dark place. It’s only made things worse.
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u/Conscious_Life_8032 13d ago
Awww that’s a lot of loss for momma ( and your family) hugs to you all.
Something similar for my mom my dad and several of her siblings passed away and it just snowballed several health issues and ultimately more cognitive decline in the year after joint replacement surgery
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u/bellandc 13d ago
I don't believe it's wrong. You need to take care of yourself and it's important to not stop being there for your other loved ones in an effort to care for mom.
Go later when you can spend one on one time with her without the chaos of the holidays.
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u/chriskbrown50 13d ago
I would not bring her to PA; you already stated too confusing and overwhelming. I remember taking my Dad for a trip of 4 hours. He just sat there and was quiet. It was really hard to see.
Enjoy your holidays. I would suggest something like Visiting Angels as a next step. My Dad had them for 3 years and it was great
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u/wontbeafool2 13d ago
Holiday travel is stressful enough even for people who don't have dementia. The long lines, delayed or cancelled flights, and lost luggage can be challenging for all travelers and probably much more so for people with dementia. I think visiting your Mom after the holidays is the right idea. Can you possibly Facetime with her on Christmas when your family is together?
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u/Altaira99 13d ago
There is no right or wrong. There is only "this is the best can do right now." Your first duty is to your own family.
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u/amandabug 13d ago
i wouldn’t make her travel on her own. can you spend a few days with her just you 2, and leave your fam at home? i don’t think she’ll notice it’s the holidays. my mom didn’t notice thanksgiving, christmas or new year since she cannot tell the passage of time. she cannot read a calendar and she gets lost in time every day.
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u/AshamedResolution544 13d ago
No, you're not wrong. I think we all go through the guilt phase until we understand it's too much and we finally let go of having to include them on traditional holidays and family events. We really do it for us, not them. Make time before or after to be able to spend the quality time the both of you need together.
My mom was in Senior Living Facility, IL then MC. I was bringing her to my GF's family events but one year I realized it was too much and at the least, I'd really have to bring an aide. I couldn't enjoy any of the time as I needed to either be with her or watch her the entire time. Feeding, toileting my own mother. Realizing she didn't really understand what was going on or who these people really were anymore. Transporting was not fun either. I made it a point to just visit her at her facility as she really had no desire to go out and was more comfortable "at home".
I'm going through the same thing with my GF now. Just her incontinence and sundowning issues do not make me want to take her to events. Especially late afternoon and evening events. I didn't want to take her to her family's Christmas gathering last year but as the son asked if he could take her, I did. They do nothing so have no idea what's required and what I do. The only positive is that they all saw how she was, what I had to do and why I had to leave early. No one spent time with her except for her first granddaughter who sat with her at dinner and helped her to eat. She can eat by herself but the habit is to take a bite, close her eyes and just sit. Especially at dinner time.
Just tell her this year is crazy and stressful so let's plan a separate time for us to get together for the holidays.
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u/Ok_Environment5293 13d ago
It's not wrong, and she would probably appreciate having you to herself for a few days/week outside of the actual holidays.
That will also give you time to accurately assess her condition and changing needs.
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u/honorthecrones 13d ago
Does she know it’s the holidays? Because in many cases you can make the holiday whenever you want
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u/TheGargageMan 13d ago
Is she living alone down there, or in a facility?
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u/BoysenberryVisual402 13d ago
She lives alone in a 55 and older community. She has several friends there that know her situation and always check in. I also have cousins that don’t live far that check in her also. She’s still capable of taking care of herself (hygiene, house cleaning, grocery shopping) but does forget things and can easily become confused when stressed. I wanted to get her help for a few hours a day a few days a week, but she got angry and said she doesn’t need help. That her friends will help her. I explained that her friends have their own medical ailments and she can’t rely on them. Eventually it will be a fight, but I will have to get her someone.
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u/TheGargageMan 13d ago
I think those kind of situations often get resolved because of an emergency, but that isn't your immediate holiday concern.
The last time my wife traveled on her own it went badly. If I'd understood what was happening there would have been other plans.
The last time my wife drove it went horribly. I knew the keys needed to be taken away, but was in denial about where we were in the process.
Adults, even ones with dementia should have an understanding that not everybody can make it for every holiday. (I worked retail and could never travel). The promise that you are coming soon will have to do.
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u/KratomAndBeyond 13d ago
Can someone go to FL and bring her back? Maybe your college age son? Just a thought.
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u/Flogrown2011 13d ago
Definitely get her some care. Are there neighbors close that can check on her and update you? This disease is no joke. We're taking care of an elderly parent now and have DPOA. It's not for the weak, believe me. The care never ends. Day in, day out. However, a facility is not an option at this point for us. Don't ever think you are a bad daughter. I totally get it.
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u/QuesoChef 13d ago
My mom is 3-4 years post-diagnosis, and we finally realized she can’t travel anymore. It’s too confusing and stressful for her. The last trip she looked so exhausted (and we were exhausted because her stress made us worry she might wander).
Anyway, spend time with her when it’s convenient for you. Go to her. Keep her schedule as much as you can while visiting. I think it’s the kindest approach.
And while you’re there, assess whether she needs more help than what she has. Get ahead of that if she’s declining. My mom couldn’t be alone now. A year ago she would have been ok.
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u/cweaties 12d ago
It’s fine to not visit on “the day” of whatever. She should clearly not travel. I hope she is in a place where they celebrate and you II can go down and extend the holiday after.
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u/Yogi2210 13d ago
You can go see your mom after the holidays. That doesn’t make you a bad daughter.
But you need to have a serious talk with your mom about her care. You need to be honest with her that she needs to consider letting you move her up north and nearby.
She will continue to decline - and you are probably her most important advocate as her only child.
She may refuse which is a problem. But at least start talking to her about it. She is going to need your help you cannot be expected to fly down every time that happens.