As caregivers, we do a lot of research when it comes to learning how to deal with dementia (such as articles like these). Most of us haven’t been a caregiver for someone with dementia before, so there’s a lot of learning that goes on. A lot of times, though, we have to use our intuition to decide how to help our loved ones – which isn’t always the best course of action for someone living with cognitive issues.
“While trusting our gut is usually helpful in many situations, it’s actually counterintuitive when dealing with dementias like Alzheimer’s disease,” says Andrea Campisi, Marketing and Admissions Director of The Reutlinger Community, a Continuing Care Retirement Community in Danville, CA. “What seems like the right and logical thing to do may actually be the worst thing you could do to get a positive reaction from your loved one.”
Instead, Andrea says, it’s best to learn from the experience of others. Specifically, other dementia caregivers and memory care professionals.
“Every person’s dementia journey is unique, and one of the first things you learn as a dementia caregiver is that there is no one right or wrong way to deal with it,” says Andrea. “What works for one person won’t work for another, and the only way to really deal with it is to try, try again … and keep a good sense of humor, compassion and patience.”
We’ve pulled together some real-life stories and strategies to help you navigate the pitfalls and puzzlements of caregiving a loved one with dementia. While each story is unique to the situation, there are overarching strategies and tips everyone can relate to – and help you realize that you are not alone.
- The Pitfalls of Reason, Rationality and Logic
“One of the first things that became blatantly clear to me when I started caring for George was that trying to explain things in a logical way didn’t make sense. Which, of course, didn’t make sense to me. George had always been a rational man, and he’d always been able to see both sides of the situation before. Suddenly, though, he couldn’t understand why he shouldn’t be wearing sandals in winter, or couldn’t grasp that he wasn’t going to work because he’d been retired for decades.He’d do things that were unsafe or just flat-out wrong, like putting the dishes in the oven or leaving the front door wide open. Of course, I first tried to remind him why he shouldn’t be doing these things, and he’d promise to remember next time, but he never did. It took me some time, a lot of frustration and many conversations with other caregivers and professionals to understand that his brain simply didn’t work in the same way anymore, which is why the normal approaches of logic and reason didn’t work, either.Eventually, we found strategies that worked best for us. Instead of explaining a situation or arguing about what’s real or not, I use straightforward, simple sentences to explain what’s happening or give an easy answer. If George gets agitated or asks where someone is or why he’s not going to work, it’s easier for me to redirect his attention and ask him questions about what he does to take his mind off the issue at hand. At first, it feels a little like exercising a muscle you haven’t used before, so it was a little bumpy to start. Now, however, it’s become secondhand, and I’ve found that we’ve been able to have a much calmer and happier home environment for both of us.” – Julie A., Spousal Caregiver
- Being a Perfect Caregiver Is Impossible
“When I was raising my kids, I had to come to the realization that being a perfect parent was impossible. The same is true for being a caregiver to someone with dementia. It’s so easy to beat yourself up over not doing things perfectly, or getting frustrated with yourself or your loved one, feeling resentment over the situation and being overwhelmed on a daily basis. This doesn’t make you a bad person … it makes you human. Most of us don’t quite know what we’re getting into when we sign up to be a caregiver, and it can quickly become overwhelming. That’s okay. You don’t have to be perfect – you just have to be there and do the best you can. Learning how to accept yourself and your limitations is absolutely necessary when you’re a caregiver. I like to recite the Serenity Prayer every morning to help center myself and remind myself that there are things I can and can’t control.Once you realize you’re ‘just human’ after all, it becomes a lot easier to accept and ask for the help you need. When I became Mom’s caregiver, I ended up saying ‘no’ to a lot of offered help because I felt like it was my responsibility and that no one else could do it as well as I could. That quickly lead to me feeling burned out, overwhelmed and depressed. I eventually learned that it’s okay to ask people to help out, and to eagerly embrace any helping hand that is offered. Here’s my tip: have a list of specific things that people can do to help you out, whether that’s going grocery shopping, cleaning the house or sitting with your loved one for a few hours. It’s a lot easier for people to say ‘yes’ to a specific thing.” – Anna M., Adult Child and Caregiver
- Sometimes It’s Okay to Lie
“I was not a fan of therapeutic lying when the doctor first recommended it to me. It’s natural to tell the truth to our parents, especially at the beginning of the disease, when you’re still thinking you can use reason and logic to help them understand the world around them. So every time Mom asked me where her mother was, or when Dad would be home, I would tell her that he or she died a long time ago, which caused her to get upset and grieve the loss all over again. Eventually, I learned that it was okay to tell little white lies in order to help keep her calm and happy. I’d say that her mom would be back from the store later, or that Dad was still at work, and then I’d find an activity for us to do together.My doctor told me that the best way to determine between a harmless white lie and a serious lie is to determine whether or not the lie helps Mom overall. So, I don’t lie when it comes to things that affect her or her care, because she’s still an adult and deserves to be part of the conversation. But I don’t get worked up anymore if I don’t give her warning that we’re going to the doctor’s office.” – Jenny W., Adult Child and Caregiver
- It’s Natural to Overestimate and Underestimate Your Loved One’s Abilities
“We had a few bumps in the road right after Mary was diagnosed with dementia. I jumped into the caregiver role full-force and accidentally ended up steamrolling over her, which caused a lot of arguments and angst between us. You see, I thought I needed to take over right away, but forgot that there’s still plenty of things that she is capable of. Even though this was hard at first, we ended up having a lot of good conversations, and I learned to be patient and take a step back so that she can perform the tasks that she’s still able to do.It goes the other way, though, too. Sometimes I forget that she can’t remember a conversation we just had, or suddenly she has problems remembering how to make a recipe. It’s a constant balance that shifts every day, and it can be hard to find the balance sometimes. I just tell myself that every day is a new day, and that I’m happy to have this time with her.” – Richard L., Spousal Caregiver
- Cherish the Good Days
“Sometimes – and it can come out of the blue – Dave has these moments of perfect clarity and it’s like he’s back to the husband I once knew. We can laugh and talk about something that may have happened years ago. I really cherish those moments, because I feel like I’m being given a gift. Even when those moments of clarity don’t come, I still find that there are things to celebrate every day. Dave is still my husband, and I love him, and finding ways to connect to and celebrate the person he was and is keeps me fulfilled on this journey.” – Emily M., Spousal Caregiver
For more information about dementia caregiving, or to learn more about our community, mission and values, please contact us at 925-272-0261.
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The Reutlinger Community’s mission is to provide high quality health care and social support services in a life-enhancing and stimulating environment with a commitment to Jewish values.
Offering Assisted Living, Enhanced Assisted Living, Memory Care, Skilled Nursing and Rehabilitation, The Reutlinger Community provides a continuum of care that allows seniors to live a life-enhancing and stimulating environment. Located in Danville, California, The Reutlinger Community’s newly renovated, 110,000 square foot community combines the comfort and familiarity of home with seasoned senior care and skilled nursing specialists to suit any senior’s needs, allowing them to live the life they choose with freedom and security.
Because we specialize in a continuum of care, our residents never need to worry about leaving the community they call home or wonder what will happen when they need some more care. Residents and families alike can have peace of mind knowing that there are full-time licensed nurses available, along with activity coordinators, social workers, caregivers, a concierge and Rabbi who focus solely on helping each resident thrive. Even better, our services and amenities are equal to those of a state-of-the-art resort. This is the lifestyle and care that your loved one deserves.
At The Reutlinger Community, seniors have numerous opportunities to engage in award-winning programs that are designed to engage the mind, renew the spirit and provide opportunities to meet new people and learn something new. Whether residents are enjoying our art program and museum, listening to a lecture or educational program or attending spiritual programming and our wide range of activities, there’s something for each resident to love. Participate as much or as little as you like, the choice is all yours.
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