+
Sign up for
The Upworthiest
Our top stories of the day delivered straight to your inbox.
upworthy

caregiving

Identity

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.

From Your Site Articles
caregiving
Family

The first razor designed to shave other people is great news for millions of caregivers

Gillette

Jim and Carol lived an active, exciting life together as husband and wife. But when Jim was struck by a car while cycling near his home, their life changed dramatically. Jim was left needing round-the-clock care, and Carol, a retired nurse, took on the role of caregiver.

Every day, Carol helps Jim through his physical therapy and personal grooming routines. "If we don't do what we do on a daily basis to help him move forward, he'll become more and more dependent," Carol says. "Some days the challenges are very difficult."

More than 40 million Americans are in Carol's shoes, providing unpaid caregiving to loved ones who are disabled, elderly, or otherwise in need of assistance. With baby boomers getting older and people living longer, many middle-aged people find themselves caring for aging parents or grandparents. Others may have a developmentally delayed adult child at home, or a family member who has become disabled due to an accident or illness. From cooking to cleaning to bathing, caregivers help others do everyday tasks they aren't able to do for themselves.

RELATED: These glimpses into the lives of caregivers prove they're real unsung heroes.

Hygiene and grooming are a big part of a caregiver's job, and anything that makes those tasks easier is a good thing. That's why Gillette's new TREO razor, specifically designed for shaving other people, caught our eye.

According to Gillette, 4000 razors have been designed for shaving yourself. But up until now, zero razors have been designed for people who are unable to do that.

Carol uses the TREO to shave Jim's face, and impressed by how convenient it is and how well it works. "As a nurse, I'm thinking, 'How can they improve this process,'" she says, "but I really think that they have."

A Different Life Together | Gillette TREOwww.youtube.com

Gillette's TREO razor was inspired by real-world conversations with caregivers and their loved ones and was pilot-tested in 2017.

"Our team noticed a conversation happening on social media about the daily challenges faced when caring for a loved one, which includes shaving," said Peter Ries, R&D Group Head at Gillette. "At Gillette we believe everyone has the right to look and feel their best. With our TREO razor, we are able to make the task of shaving less daunting for caregivers by enabling them to provide their loved ones with the dignity of a fresh shave."

The design team at Gillette pulled apart the razor as we know it and rebuilt it from the bottom up. The TREO includes a unique blade with a safety comb and grooves that prevent clogging, an ergonomic handle for better control, and built-in special shave gel that eliminates the need for water so caregivers can shave their loved ones without having to transport them to a sink.

RELATED: Turns out almost everyone loved that 'controversial' Gillette ad about toxic masculinity.

The "best a man can get" company has recently made big waves with ads that include trans people and ˚ Now, with the TREO razor, they company has taken inclusiveness one step further. Time Magazine awarded the Gillette TREO 2018 Innovation of the Year in the accessibility category and Fast Company called TREO "A Masterpiece of Inclusive Design."

Well done, Gillette.

From Your Site Articles
Related Articles Around the Web
caregiving

Her striking photos of her father capture the struggles and rewards of being a caregiver.

True
AARP + the Ad Council

In late 2007, Safi Alia Shabaik noticed something strange about her father.

“He didn’t have the expressions he used to have,” Safi says. “His face wasn’t as reactive.”

Safi’s father was an immigrant from Egypt, and over the years, he’d carved out a successful life in America. Working as a professor of mechanical engineering, he was able to be a provider.

“He's been so generous with his family,” Safi says.

Safi and her father. Photo by Safi Alia Shabaik©, used with permission.

More than just a hard worker, though, Safi’s father was vibrant and funny. He often made Safi laugh.

But at some point, he started to change. Safi’s mom noticed this dampening in his personality. She worried that her husband, then 71, had suffered a stroke. They convinced him to see a doctor, and after undergoing a series of tests in early 2009, he received the news: He had Parkinson’s disease.

For several years, the symptoms were manageable. His limbs may have been stiff, his emotions flat, but he was still more or less himself. But then two years ago, things quickly got worse.

Soon it became clear:Safi would have to serve as her father’s caregiver.

The role of parent and child had flipped, and now, Safi had to bathe and feed her father and calm him in moments of delirium.

The experience has taken its toll. “It’s difficult to see the person you knew your whole life change and become somebody you don’t know because of a disease,” she says. “It’s emotionally, physically, and mentally exhausting.”

As she’s taken on a caregiving role, Safi has learned something important —  in order to be a good caregiver, you need to take care of yourself too.

But it can be intimidating to know where to start. Here are five lessons she’s taken away from the caregiving process:

1. Caregivers must — absolutely must — take breaks.

Being a caregiver can be exhausting on every level. And as research shows, when we’re tired and stressed, we often make bad decisions.

“The reality of caregiving is so heavy; you have to take time for yourself or you’ll implode,” Safi says.

Photos by Safi Alia Shabaik©.

By taking breaks, caregivers can increase their resilience and patience, important traits when caring for another person. Sometimes the breaks can involve small tasks, like getting a haircut or running to the grocery store.

“Just being out of the house in a room with hustling and bustling people, a vision of life, becomes a luxurious reprieve from a dark state of mind,” Safi says.

A short vacation can also be huge. Longer breaks allow caregivers to return to their loved ones feeling refreshed and ready once again to help.

2. Bridge the divide with an aging parent using something that you — or both of you — love.

Safi is a professional photographer and has a talent for capturing the hidden, unadorned moments in American cities. “Photography,” she says, “is my window into understanding things.”

She began photographing her father partly for the same reason: to understand what the disease was doing to him and how it was affecting their relationship.

Her art, then, helped her to connect with her father in one of the most difficult moments of her life. It was an important step in taking care of herself.

Photo by Safi Alia Shabaik©.

By documenting this moment of profound change, she’s also come to reckon with some of the larger questions in life.

“I’ve come to a lot of realizations, not only about my relationship with my father,” she says, “but also about my relationship to the world — what I want for myself and what to me is a good quality of life.”

3. Remember that the disease and the person are not the same thing.

Caregivers can find themselves frustrated with the person they're caring for. That’s especially true if they're suffering from cognitive decline that often accompanies conditions like dementia. To avoid personal meltdowns, Safi found that an attitude adjustment helps.

“The things happening in front of you are not that person,” she says. “It’s the disease causing those things.”

It’s also important to remember a basic fact: We’re all human, and it’s not only OK but normal to feel frustrated in these kinds of situations.

This acknowledgment can help caregivers gain a sense of peace, which is a helpful state of mind while caring for an aging and temperamental parent.

4. Don’t forget to exercise. Seriously.

Exercise can seem like a special privilege, something to be done in one’s spare time — but spare time may be fleeting for caregivers

Exercise, however, can make a huge difference and is worth setting aside time for. Studies show that physical activity can reduce stress and depression. It can increase one’s energy levels and improve sleep.

All that is huge for caregivers. Caregiving requires a tremendous amount of focus, energy, and positive-mindedness. So while exercise might seem like a privilege, caregivers should consider it an investment in their care.

That’s been true for Safi. She finds time for different forms of exercise, like going to the gym and taking short morning walks.

5. And, most importantly, remember that you’re not alone.

Caregiving can be an isolating experience with so many hours spent at a parent’s bedside. But caregivers are not alone. When Safi talked with her friends, she quickly realized that many were going through similar experiences and had parents suffering from conditions such as Alzheimer’s.

“There is this new bond bringing us together,” she says.

And, in fact, Safi was able to reconnect with old friendswho are also serving as caregivers— old friends she loves but hadn’t talked to for a long time. Sharing their stories, she learned, was profoundly healing.

“The best remedy is to share information and learn from each other,” she says.

Photo by Safi Alia Shabaik©.

Caregiving can be exhausting, but by taking all these steps, Safi has come away with a new understanding of her father, of herself, and of the vision she has for her life.

And she’s seen just how resilient all of us can be.

“When you’re thrown into a situation where you have to be the strong one, you take the role,” she says. “When everything is crumbling around you, somebody has to be strong.”

Family

Caring for older loved ones around the holidays? These 11 tips may help.

Helping the ones you love can go hand-in-hand with holiday cheer.

True
AARP + the Ad Council

The holidays are right around the corner, and for many that means reuniting with family.

It's the perfect time to connect over delicious home-baked pies, laugh during competitive charades, and just generally spread good cheer to one another.

Via istock.

However, many older loved ones may not be able to participate in the holiday fun as easily as they once could.

Going up and down stairs may be more difficult now, and they might not be able to remember everyone they want to give gifts to. Or maybe they can no longer drive, which means getting to a particular destination on their own could be tough. Maybe they avoid going to a family gathering altogether because it just feels too hard.  

And if your loved one hasn't asked for help directly, it can be tough figuring out how to jump in and offer.

If you're just learning that they're developing limitations, the holidays are perhaps the best time to broach the conversation about their current or future care needs. There’s no better moment to make those extra efforts for the people you love.

Here are 11 things you can do around the holidays for your loved ones who might not know they need help.

1. Have a pre-holiday gathering to develop a caregiving plan.

Before your family get-together, touch base with everyone to make a plan about how everyone can best support your older loved one during the holidays; that way you can be sure they aren't left out of the festivities. Who will be picking up mom to bring her to dinner? Who's taking her shopping? Is someone shoveling her snow? Remember that caregiving doesn't need to be a solo effort.

2. Offer to take them holiday shopping.

Image via iStock.

If you've noticed they've had trouble driving lately, you can suggest taking them holiday shopping. After all, you're already going. Plus, it's a fun and meaningful way for you two to spend time together.

3. Bring gifts and family to them.

This is especially helpful if your older loved can't easily leave the house. If that's the case, why not arrange the holiday gathering plans around them so they can still be a part of the action? They can enjoy gifts, food, and fun all from the comfort of their home.

4. Use after-dinner time to maybe start a conversation about next steps.

The kids will likely be off playing, so it's an ideal time to bring up the subject of how you can be helpful to your older loved one. You don't want to ambush them, but the end of the year is a great time to touch base and ask your loved one how they feel the year has gone and what kind of care and support they might need in the new year.

As AARP's Prepare to Care Guide states, "a plan should never be made without the participation, knowledge, and consent of your loved one." By taking an opportunity to begin talking about it over dessert by the fireplace, it'll hopefully feel more like an open-ended conversation.

That said, if the timing doesn't feel right, you shouldn't force the issue. AARP's family caregiving expert Amy Goyer says you might use the holidays as a kick off point to schedule the conversation for a later date when everyone can feel up to speed and on the same page.

5. Help them feel included in the holiday festivities.

via istock.

For older loved ones with Alzheimer's or other memory loss issues, it's easy to just fade into the background, especially if they don't remember past holiday traditions. But the important thing to remember is that holidays are about being together, and no one should be left out. That's why AARP's family caregiving expert Amy Goyer stresses the importance of encouraging them to get involved in any way they want. From singing carols to decorating the Christmas tree, it's the little things that may spark some unexpected joy.

"Understand what’s meaningful for them," says Goyer. "Think about how you can adapt those things to fit their abilities."

6. Make them a unique holiday gift that will remind them how much they mean to you.

Maybe it's a scrapbook filled with photos of your family from past holidays that they can always flip through to remember wonderful moments. Or, perhaps it's a watch or necklace you had engraved. Gifts with a real personal touch are a constant reminder that they have family who loves them.

7. Ask them what fun activities they want to do during the holidays.

This is both a way for you to spend more time with your older loved one and make sure they're going out and doing things. List items could include visiting an obscure museum to something as simple as taking the afternoon to learn a cool new game. As loved ones age, they can begin to feel like they're losing their independence. Giving them the chance to decide what you'll do together can be a fun and empowering experience.

"It’s okay to create new traditions," stresses Goyer.

8. Encourage kids in the family to interview their elders.

Image via iStock.

Considering everyone has a recording device on their phones these days, this is an easy and fun thing to do before or after a holiday meal. Not only does it strengthen the bond between the generations, it also makes your older loved ones feel like their stories still matter. And at the end of it, you'll have their memories captured on tape to cherish for years to come.

9. Take a day or two and just focus on yourself.

This may sound counterintuitive to the season of giving, but if you've been dedicating a lot of time and effort to working out a caregiving plan, you may be burned out. If you don't take some time to recharge, you won't be useful to your older loved ones — or anyone for that matter. Finding that balance between caring for yourself and others is vital to keeping the care going.

10. Look at the holidays as a chance to test out new living situations.

Via Jennifer Martin/AARP.

If it seems like your older loved one can no longer live alone but isn't eager to change up their lifestyle, why not suggest they stay with you or a fellow family member over the holidays? It's an easy way to test out the new situation under ideal, aka celebratory, circumstances.

11. If you live far from your older loved one, figure out how you can help from a distance.

Image via iStock.

You may not be able to be the caregiver on the ground all year long, but that doesn't mean you can't do a lot for them. If you're going to be a point person for care but can't physically be there, make sure you have a local team of support lined up. Whether they're family, friends, or hired help, it's important to know someone can get to your loved one quickly and easily in an emergency.

The transition into caregiving can be difficult, but getting the ball rolling over the holidays might just make it a little easier.

And no matter what steps you choose to take, be sure to keep listening to your loved one throughout. They're a huge part of this new step, and their voice should always matter.

Of course, everyone's situation will be unique, but if you approach the adjustment thoughtfully and with love, it can make all the difference.

From Your Site Articles
Trending Stories