Advice for Caregivers from our Alzheimer’s Community
Whether you’re just starting the journey of caring for a loved one with Alzheimer’s or if you have been a caretaker for years, we all need support. To help encourage all of our caregivers in the Alzheimer’s community, we reached out on the AlzheimersDisease.net Facebook page, asking you to share a piece of advice or wisdom for someone impacted by this disease.
Your advice varied widely, from practical tips to ways to foster an emotional connection.
Here’s what you had to say.
“They are scared.”
One of the quickest ways to return to a place of compassion for your loved one is to think about the fear they must be facing. Surely you have imagined what it must be like to be in their shoes, unsure of who is who, what is what, and their place in the world. And, yes, caring for someone day in and day out is hard, but when we remember how hard it is for them, it’s likely that our hearts will soften and we will find the kindness to keep going in a way that is loving and helpful.
“Be kind. They are so confused, and they are scared.”
“Remember how you felt the first day of kindergarten: lost and afraid. Well, every day can be like that to our loved ones.”
“This is not your loved one’s fault.”
Of course, we know this on an intellectual level—that our loved one did not choose to live with Alzheimer’s. But sometimes when we are stressed or overworked, we may forget for a moment. When that happens, remembering that this disease is not their fault is a good way to come back to a place of neutrality, calmness, and understanding.
“This is not your loved one’s fault, so love them where they are and cherish every minute.”
“Though I may not remember your name, or even who you are, it’s my disease’s fault—not mine. Just remember you’ll still always be tucked away in my heart.”
“They love to listen to music of their era.”
Several of you mentioned playing your loved one’s favorite music as a way to calm them, and also re-connect them with the good times in their lives. Music certainly has the power to transport—and it’s an easy, affordable and portable way to bring some levity and joy into their day.
“They love to listen to music of their era, and it is soothing.”
“Music (that he is familiar with) and taking my dad places helps him tremendously.”
“My Dad never tired of showing people his pictures.”
Photos can certainly help someone with Alzheimer’s recall parts of their life. Some even suggest making albums and labeling that album as “Joe’s Story” or such to help them feel connected to their past. If you like, you can also clearly label the photos to help your loved one remember their story. Moreover, if the photos are of people smiling, your loved one will likely feel comforted, and will also smile back—which can help bring a sense of happiness.
“Pictures are important—they can bring memories back that are so important.”
“Put up lots of pictures of their past. My Dad never tired of showing people his pictures.”
“They like to have their albums with pictures of their loved ones.”
“We always tried our best to use humor.”
Humor goes a long way in lightening spirits. If you can get your loved one to laugh, that’s certainly a bonus. But it’s also okay if the laughs come with friends who understand your situation and the absurdity that can occur every day. After all, tragedy and comedy are two sides of the same coin—and we can acknowledge one while taking a moment to acknowledge the other as well.
“We always tried our best to use humor.”
“Try to find a light side. We try to turn to humor every day to ease the dread of this awful disease.”
“Staying on a set schedule every day was a tremendous help in keeping her calm and happy.”
Several of you mentioned keeping a schedule. By not introducing anything too new into their day, it’s much easier to maintain a sense of order and calmness. Likewise, a few in the community mentioned that you will want to respect your loved one’s home environment and try to keep things the same day to day to avoid taxing their mental faculties.
“I found during that time if I stayed on a set schedule every day that it was a tremendous help in keeping her calm and happy. Right down to TV shows. If it was something she had watched for years and didn’t have to think about what was going on, she was content.”
“Do not move their home around or remove any items they are used to. If anything in her home was moved, it made my granny a nervous wreck and caused her to start pacing.”
“You will not get through this without compassionate fibbing!”
By trial and error, so many of you find that it’s easier to let them believe what they want to believe. Correcting them may only serve to frustrate you and tire them out. We will never fully understand what is going on in their minds, but an easier path toward a good day is to try to understand them rather than trying to get them to understand reality.
“You will not get through this without compassionate fibbing! If your loved one wakes up every morning thinking the sky is pink, then you go along with them and tell them “Well, maybe tomorrow it will be blue!” Go with the flow as long as they aren’t hurting themselves or someone else!”
“Don’t keep trying to correct them.”
“When she would have hallucinations, which was only occasionally, I would pretend I saw the same thing—and she would let it go quicker when she realized I wasn’t scared and neither was she.”
“Live in their world instead of trying to make them live in yours. Agree with them; don’t argue.”
“Just remember the person you loved before Alzheimer’s.”
This disease will slowly, slowly erode the personality of the person you know and love. Although they may appear very different on some days, they are still the person you have spent years with. Many of you wanted to remind the community that our loved one’s still deserve love, no matter what state they are in with this disease.
“My brother whose wife has Alzheimer's said someone asked him why he and their kids still visits her every day since she probably doesn’t remember them most the time anyhow and that must be absolutely heartbreaking. He said his response was she might not know who we are to her, but we still know who she is to us and that’s why! My advice is never walk away from the ones you love, even if they are no longer the people they used to be. They still need your love!
“No matter if a loved one remembers you or not, they still need and deserve your love, devotion and social interaction for their quality of life.”
“Just remember the person you loved before Alzheimer’s is still there trying to communicate.”
“Still make memories.”
While you still have your loved one, appreciate the good times. Several of you made wonderful suggestions to keep making new, good memories. Yes, you can still go out of your way to do fun, special things to make memories—after all, this will give you so much joy in the moment and when you look back at your time together.
“Be patient, love them, make every moment matter and still make memories.”
“Create good memories.”
“Take care of yourself, too.”
It can be easy to slip into the role of doing things for someone else 24/7. But, this is the fastest path to burning out, and possibly resenting the person you are caring for. Yes, your person may have needs around the clock, but you had a life before the disease. It’s OK to take time for yourself—as much as you need. And, if you are struggling to take time out for yourself, try marking it in your calendar and honoring it like you would an appointment.
“Take care of yourself too. Extremely important to have you time during the day!”
“Don’t feel guilty if you can no longer keep them at home.”
This disease is progressive, and it may one day become more than you or you and your family can handle. That’s okay. If the role of caregiver becomes too much for you, the kindest thing may be to seek outside support, or even move them into a care facility.
“Accept help when you need it and don’t feel guilty if, for everyone’s safety, you can no longer keep them at home. There are wonderful professionals who can take over.”
We want to say thank you to everyone who shared so openly. We appreciate your shares and feedback to help support the community.
Are you feeling burnt out?