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Adult children share how they got over the 'guilt' of putting their parents in nursing homes

"It's just so hard taking the role of parent to your own parent."

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People share how they overcome guilt of putting their parents in nursing homes.

It's a painful transition to watch your parents grow old and need help being taken care of. For many adult children, the responsibility falls on them to be caretaker. Often, it's an overwhelming decision.

The question about seeking additional help caring for aging parents from nursing homes or assisted living homes can be conflicting. It can also bring lots of guilt.

To help support others going through this difficult transition, a group of adult children with aging parents opened up about how they dealt with the guilt of putting their parents in nursing homes. They shared their personal experiences and how they processed the raw emotions of deciding what was best for their parents.

These are 11 real stories of how people overcame guilt about putting their aging parents in nursing homes.

- YouTube www.youtube.com

"Well, my Dad wasn't safe in his home on his own. Wasn't eating well. Threw trash and soiled underwear wherever. Had a biblical rat infestation in his hoarded Y2K food supply. Had said rats chew through his water pump's power supply so he lost running water. Now he's fed well, is taking his meds, is in a clean environment, has transportation to medical appointments, and has people all around him for when he has falls. So all that guilt is miniscule compared to his improved safety. It may not be as dire for your Dad, but it sounds like he'd be safer too. It's rough making the argument for it and following through though. Wish you the best." - Ariwara_no_Narihira

"Totally this. If they escape you just once, guilt is gone. Where the guilt comes in is if you put them there and forget them. Visit often, have meaningful interactions (if only on your side) try to see the glimpses of their old self, make them smile every single time. Cherish every moment, even knowing they are a fraction of themselves as one day it won’t be an option. Speaking from someone that has been there." - eeekkk9999

"Dealing with this right now with my grandmother. I'm also a caregiver for my disabled mom and brother. My mom and brother have accepted their limitations and help me rather than hinder me. My grandmother on the other hand is in that phase of life where she thinks she is firing on all cylinders but isn't and gets mad when I try to get her to a place that can ensure her safety. What helped me a lot was the notion that she would get mad me no matter what. I'd rather have her mad at me for putting her in a facility designed to care for people like her, than her being mad at me while being a hazard to her own health (while driving me crazy in the process.) You can't avoid the hurt. The anger, the frustration, the sadness....it will happen regardless. So might as well choose what's best. You'd want someone to be brave enough to deal with you in your twilight years as well." - 331845739494

- YouTube www.youtube.com

"As far as the guilt, the situation was beyond what I could do for her. I was so burnt out from being on high alert that a social worker told me flat out something HAD to change or I was likely to be in the hospital or dead within the next four to six weeks. I was severely sleep deprived and my patience was on fumes. Now I can be the caring daughter instead of the inadequate caregiver. We still have our moments, however mom is doing much better where she is in spite of some declines in her health." - DTW_Tumbleweed

"It's hard but so is losing your sanity. You and sis are not trained or medically qualified for this level of care management. I felt guilt putting mom in a home but she absolutely could not be left alone for one hour because she would get so crazy." - Vegetable-Fix-4702

"I agonized over this for years. One day my mother found some of her photos chewed up by mice. We called Orkin, they said 'you should vacate for 2 weeks.' A nearby Assisted Living place was offering a one month "tryout" so I had her try it. She made some friends there, and after 2 weeks the thought of going back to a house she had to clean, was too much. She said it felt like living in her dorm again. But 'temporarily!' Yes, yes, temporarily. After a few years, it was clear she'd have to sell her house (those places are expensive) so I moved her to one close to my house; after that she kind of forgot about her house so I took the liberty ..." - benri

"My Dad is in a home and he hates it. He yells at Mum and myself every time we visit. Tries to guilt trip us. But it’s the best thing for him. Mum is a short small woman, Dad is/was over six feet and he was struggling getting himself to the bathroom on his walker. Kept falling over and needing to call the ambulance to get back up. I live two hours away. It’s not ideal, but it’s physically the best place for him. He refused to have carers do anything but the basics, Mum never got a break." - ThehillsarealiveRia

"For your own peace of mind, I think a big part of it is semantics. Instead of saying that 'I put my dad in a nursing home,' say 'I moved my dad to a place that can better care for his needs.' The words 'moved' vs 'put' makes a big difference in perspective." - andysandygirl

"Guilt is the nemesis of caregivers. Guilt is our compass that tells us we have done something wrong. Placing your father in a care residence where he can get the help, support and healthcare he needs is not wrong. Yes, it does make you 'feel guilty', as if you have failed him, perhaps? I work with many caregivers who get to this point with a parent. The real struggle is their own emotions. Visit him often, be there a lot initially to help with the adjustment phase. I hear you say that both you and your sister are 'running yourself ragged...' this is not good for your health. His being stubborn is often just needing to hold on to his independence. Showing respect for that and finding a way to sell the cars, the house making it his decision. This is a very hard thing to do. It can wrench at your heart. As long as you don't abandon him, you are doing what is needed for all." - lifelovelegacy

- YouTube www.youtube.com

"I wish we could drop the stigma associated with guilt and the use of assisted living, nursing homes, rehabs, etc. Some of these places are horrible. But that’s the way it is with everything. Some are great. Personally, I felt relief when my dad entered assisted living. He is surrounded by professionals. There are systems in place for the situations he encounters. There are more people watching him and they have more experience than my family does. But, most of all, he has a much better social life because he has friends he sees regularly. Social interaction is key." - inflewants

"You don’t, you just learn to tolerate it. Serve God, yourself, and then others in that order. If you are doing your best, that’s all you can do. Guilt is a reasonable emotion. So is relief. Give yourself grace." - cutekthx

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Family shares beautifully practical 'sundowning' strategies for loved ones with dementia

The late afternoon and evening hours can be especially challenging for people with dementia and their caregivers.

@iamgertrudejordan/Instagram (via Upworthy/Instagram)

Ty Lewis shares how she helps her mom, Gertrude, through sundowning time.

Anyone who has had a loved one with dementia knows how challenging it can be to care for a loved one whose memory is deteriorating. As they lose grip with their own reality, relationships take on new dimensions, emotions can become complicated, and love and grief walk hand in hand more often.

The good news is that no one is alone in these experiences. Nearly 6 million Americans have Alzheimer’s disease or related dementias, and according to the Alzheimer's Association, 83% of the help provided to these patients comes from family members, friends or other unpaid caregivers. Thankfully, some of those folks are utilizing social media to raise awareness and provide support and education about caring for people with dementia.

People like Ty Lewis.


Lewis‘ mother, Gertrude Jordan, was diagnosed with Alzheimer's disease in 2014, just a year after her own mother passed with dementia. Lewis has spent the years since learning and sharing all she can about caring for people with dementia, becoming an advocate and source of support for caregivers. She is now a Certified Alzheimer's Disease and Dementia Care Trainer and Certified Dementia Practitioner.

In a post on Instagram, Lewis shared some practical tips for managing “sundowning,” a term for the late afternoon and evening hours when many people with dementia have the hardest time.

In the video, Lewis' daughter Giavanni sings a song of praise that is clearly familiar while Lewis calmly and patiently talks to her mother. She doesn’t force it, but Lewis gently draws Gertrude closer to her as she starts to get upset, and we can see her calming down on the second time through the singing. "Music is a strategy," the text overlay reads.

As Lewis herself says, dementia shows up differently in every single person, but these tips might help caregivers who are feeling at a loss for what else to try.

Watch:

Lewis shared in the caption:

“Sundowning in Dementia typically occurs in the late afternoon and evening. During this time, your LO [loved one] will experience increased confusion, agitation, mood swings, anxiety, and behaviors will increase.

Sundowning is HARD! Here are a few strategies. As always, these strategies may or may not work with your LO. Try different ones to see what works best for you through observation + data collection.

1. Create a daily consistent routine.
2. Minimize environmental triggers (bright lights, strong smells, textures, etc)
3. Stay calm
4. Use music to soothe your LO
5. Create a relaxing environment
6. Avoid OVERstimulation
7. Contact your physician to discuss alternatives like medicine if you cannot control the behaviors.

For more information, visit incaseiforgetconsulting.com.”

The video brought people to tears as they recalled their own difficult moments with their loved ones.

"This was brutally hard with my mom. You all handled that so beautifully. Thank you for sharing. ❤️" — sarahdodge9

"I take care of a woman with dementia. It’s all about heart and the present moment. ❤️ 🥹" — abanomics

"Glad this is being discussed now so people can learn about it, although I wish it was when my great aunt was still alive. Gosh was it hard. I lived with her for a time to help with care, and nighttime was simultaneously heartbreaking and scary. She’d spend most of the night repeating the same path through the rooms, opening and closing doors, agitated and afraid, looking for her late husband, wondering why I was there (& by 'I' I mean my mother which is who she thought I was). Alzheimer’s is a thief that often steals our loved ones before death." — mamalifemagic

People who have worked with dementia patients offered praise and appreciation for the post as well:

"I work in an acute care hospital and unfortunately see dementia patients at their worst. Unfamiliar environment, minimal family interaction, acutely ill, and so on. Sundowning at the hospital can be extra stressful. This is so lovely to see the care and patience in the home. 💜 And of course the music.💜" — lesismore77

"I formerly worked in recreational therapy in skilled nursing homes and was hired specifically for this purpose (distract from sun downing behavior). Music is such a powerful therapeutic tool and a beautiful way to connect with a loved one with dementia. Wonderful video! 👏❤️" – amynjoedecker

"Thank you for this! I have been a nurse for 24 years and have never seen this kind of love with a pt in an active episode of sundowners. It's tortuous for a loved one to care for someone in this condition because they can no longer regulate their emotions. Our culture here in America has to change to beautiful examples just like this. Loving touch, calm touch, calm tone of voice, beautiful heartfelt song bird of a voice...all my love to all 3 of you. ❤️❤️❤️❤️" — corinnawallen

Lewis shares lots of helpful information for caregivers on her website, www.incaseiforgetconsulting.com, and you can follow her on Instagram here. (And if you want to hear more of that angelic voice of Giavanni's, you can follow her on Instagram as well.

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Woman shares a heart-wrenchingly beautiful exchange with her dad who has dementia

The love is there, even if he doesn't remember why.

Photo by Tara Winstead/Pexels

It's helpful to see examples of loving a family member through dementia.

Any family who has had a loved one suffer from dementia knows how incredibly difficult it can be. The CDC estimates that 5.8 million people in the United States have Alzheimer's disease and related dementias, which means many millions more are serving as caregivers for family members with dementia.

Alzheimer's is the most common cause of dementia, but there are others. For instance, alcohol abuse can cause dementia, which is what happened to the father of a woman named Bailey who has been sharing their mutual journey on TikTok.

Bailey's dad, Scott, was diagnosed with Wernicke-Korsakoff syndrome (caused by vitamin B1 deficiency due to alcohol abuse) earlier this year, and he has been living with Bailey for the past six months. In her videos, Bailey gives glimpses of daily life with her dad and the ups and downs of helping him manage a life with missing memories.

One thing Bailey's videos show is that dementia is not a one-size-fits-all condition. As with most people with dementia, Scott has good days and bad days, but his ability to communicate what he's feeling even when he's confused is quite incredible.

Not being remembered by your own parent, however, isn't easy. And figuring out how to communicate with a loved one who doesn't know who you are without scaring or confusing them further is a huge challenge. But Bailey shared an exchange with her father that beautifully illustrates how their emotional connection is still there, even if he doesn't remember why.

In the video, Scott tells Bailey that her calling him "Dad" freaks him out. He says he has feelings for her and knows that she is important to him, but that he doesn't think he's her dad. He also says he doesn't want to hurt her feelings. She explains how she feels about him and offers to call him Scott if he prefers, and the whole interaction is just beautiful.

Watch:

@baileyrosek

Some days are easier than others.. i miss you dad, but i love you very much, Scott. #dementiaawareness #wernickesencephalopathy #caregiversoftiktok #parentofmyparents

"Some days are easier than others," Bailey wrote in the caption. "I miss you dad, but I love you very much, Scott."

Seeing Bailey's family navigate the hard parts as well as the healing that has come from Scott's illness is truly eye-opening. Those who are going through a similar journey might find inspiration in how they communicate with one another and those who haven't seen much dementia firsthand can learn what it might look like.

Of course, each person's experience is unique and you can't always apply what works for one person to another, but there's a lot all of us can learn from witnessing others handle something so difficult with grace and patience and love.

@baileyrosek

I love you dad. If you haven’t yet, go hug your parents/loved ones today. #dementiaawareness #youarenotalone #ilovemyparents #fyp #fatherdaughterlove

Bailey's family has experienced a change in Scott's behavior that has actually been positive in some ways. She has said he has become more pleasant to be around, and some of her videos showing his emotional accessibility and willingness to apologize for hurtful things he'd done are so moving.

@baileyrosek

People change and we believe in second chances. As sad as this has been, it’s a second chance for all of us 🤍#caregiversoftiktok #foryoupage #wernickekorsakoffawareness #tbisurvivor #parentofmyparents #ilovemyfamily

And Bailey's way of entering his world, helping him figure out what's real when he's open to it and going along with where and who he thinks he is when correcting him would just cause more confusion is a masterclass in communicating with someone with dementia. It can't be easy, but she excels at it.

@baileyrosek

Replying to @hiddenstyle4 we have happy convos all the time! :) #caregiversoftiktok #dementiaawareness #wernickesencephalopathy #wetbrain #parentofmyparents

Thanks to Bailey for being vulnerable enough to share her family's experiences so the world can see examples of patiently loving someone through dementia, and so those who are going through something similar know they are not alone.

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A viral short film shows the struggles families face when dealing with dementia

'The Wait' was originally released in 2018, but has recently resurfaced thanks to Reddit.

Photo by Mykyta Martynenko on Unsplash

A short film shows the complexities of dealing with an ailing parent.

Caring for an ailing parent takes a real toll on a person. And when you're dealing with other things in your life, it can feel like you're drowning. In a short film called "The Wait," director Jason McColgan paints a heartbreaking but realistic portrait of what it is like to care for an aging parent suffering from dementia.

The short was released in 2018 and won a couple of awards back then. In 2021, the film went viral again after being posted on Reddit.

In the film, which takes place somewhere in the United Kingdom, a woman is seen sitting on a bench at a bus stop. When the film opens, she's speaking on her phone making an appointment with a doctor's office. An older man is seen sitting next to her. As the camera pans out, we see that she is visibly pregnant and rubbing her stomach. She is clearly stressed.

When the man begins to make conversation with her, it's clear her feathers are ruffled a bit. The questions range from typical, "When are you due?" to invasive, "Do you have any family?" and with each question her stress level seems to rise. Many women have dealt with their fair share of overly invasive (however well-meaning) strangers during pregnancy, so it's not surprising that she's a little distressed by his constant question asking.

Soon, the bus pulls up and that's when we get the full story. This older man is her father, and it's just the two of them. Clearly the man is suffering from dementia or a similar memory loss disease, and his daughter is under a massive amount of stress.

Watch the film below:

Alzheimer's disease is the most common form of dementia, though the film never reveals what exactly the man is suffering from. According to the CDC, in 2014, there were an estimated 5 million adults over the age of 65 in the U.S. suffering from the disease. The CDC projects that 14 million adults in the U.S. will have the disease by 2060.

Signs of dementia or Alzheimer's include using unusual words to refer to familiar objects, forgetting old memories and the inability to perform tasks independently. If you suspect someone in your life may have dementia, you should speak with a medical professional to have them properly assessed.

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