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How to care for yourself while you’re a dementia caregiver

Balance is key to caring for someone

By Cliff Mehrtens
Novant Health

Being the care partner for someone with Alzheimer’s disease and related dementias can be an emotional, consuming and challenging role. That’s where Melissa Welch comes in. She supports those who are supporting others.

Welch, instead of “caregiver” prefers the term “care partner,” which evokes a sense of cooperation and common goals between the two people in the relationship.

An estimated 5 million Americans age 65 and older live with Alzheimer’s disease. By 2050, that number is projected to rise to about 14 million. About 80% of people with dementia are receiving care in their homes, usually from a family member or friend.

Welch, a licensed clinical social worker at Novant Health Memory Care, answered questions about care partners, their roles, concerns and how to cope.

How important is it for a care partner to take time for themselves, despite the many things they need to do for their loved one?

It’s easy to accidentally trade your quality of life for the other person, out of love. It’s also the easiest way to end up running yourself into the ground. Some care partners feel guilty every time they want to take an afternoon to themselves, especially when their loved one wants their presence at all times. Sometimes you have to do things that are for the good of the whole, as opposed to the good of one.

When you take a break, when you get that respite, you come back as a more-rested, and engaged caregiver. If you’re never getting any break, you will likely find yourself more easily annoyed and impatient with the one you are caring for. It’s kind of counterintuitive to think ‘I need to get a break to be able to be a better caregiver.’ But it’s true. Getting those breaks allows you to get back to it in a way where you’re not totally spent.

As a care partner, how important is it to understand your loved one’s brain is processing things differently?

With Alzheimer’s disease and other dementias, a person is unable to use logic and reasoning skills as those are more complex brain skills. For instance, if you’re on your way home and you hear on the radio there’s a terrible accident on I-40, you probably are going to take back roads if you normally take I-40. For someone with dementia, if they still can drive, they would likely get in traffic because the brain doesn’t tell them “I need to do something different. I need to adapt.” Similarly, when a care partner is trying to explain something using logic and reasoning, the person with dementia can easily get stressed because they are unable to make the connection. This leads to the care partner feeling more frustrated when they can’t get their point across. Therefore, it is really important for the care partner to learn how to adapt in the way they both engage and communicate with a person who has dementia.

What’s the best way for a care partner to educate themselves, learn about the disease and their role?

The National Institute of Health is has a lot of wonderful resources online and in booklet forms. Here at the Memory Care Clinic, we specialize in all types of dementia.

Even if your loved one isn’t a patient, let’s say you are a daughter who cares for someone who has dementia that lives out-of-state, you’re still eligible for our services here as a care partner. You can meet with me 1-on-1, or with other family members, whoever is your team that is involved with the person who has dementia. We encourage you to have balance as you move forward, so you’re not trading one person’s life for another. It can raise a caregiver’s risk for an early death. When a care partner passes away before the person who has dementia, they lose their primary advocate. In the end, that’s bad for everyone.

We have other opportunities as well, here at Memory Care. I lead a caregiver support group weekly. We also have something called ‘Memory Makers,’ a program for those who have dementia, and their loved ones. Right now, we’re doing them virtually. It’s a time where I try to engage both care partner and the person with dementia. We give them something that someone with any level of dementia would be able to do, fun activities they can do together.

How does a care partner deal with the ups-and-downs and unpredictability of communicating?

Err on the side of self-worth and dignity. On days they seem very lucid, take advantage of those moments.

You’re adapting along the way. The person with dementia cannot adapt. Get help from people who are in your corner. It doesn’t have to be family members, it can be friends that can sit with Mom for a couple hours, just so you can go get your nails done, or go fishing, whatever it is that fills your bucket.

What tips would you give a care partner to deal with the emotional crush they face?

Simple coping skills, whether it be deep breathing, getting outside and going for a walk, exercising, those types of things. For someone who is feeling the weight of the stress, almost like they’re drowning in their stress, I suggest getting professional help. We offer therapy here. I’m a psychotherapist and can help the care partners create some balance in their home, to help them make sure they’re looking at both the person who needs care and themselves as equal parties.

There are times where your needs need to trump theirs so that you can fill back up. You need to get out of the house, you need a break from caregiving. Being a care partner is painful from a grief perspective. Anyone that loves someone who has dementia, is grieving many losses along the journey, not just after they pass away.

What about a care partner who, out of love or dedication, tries to do too much for their loved one who may be capable of doing some things?

I would encourage any care partner to carefully observe what is within the realm of a person’s abilities, and the more that they can do independently, the more you want them to do independently, because it enhances their self-esteem. If a person can, for instance, still do the laundry, let them do the laundry. If they can’t do the laundry, but they can help fold towels, let them fold the towels. If they can’t fold any more, but they can sort by color, let them sort by color.

That makes them feel good because they’re able to contribute to the household. If you take away everything they can still do on their own, then they’re not stimulated, they’re not engaged. And they don’t necessarily have anything to feel good about.

What makes a good care partner?

Someone who loves the person they’re caring for and chooses to exercise that balance for the good of both. Someone who chooses to make sure they’re supportive, but still able to live their life, not putting their life completely on hold.

You may not be able to do all the things that used to be able to do, but you’re making your life a priority. You’re still going to book club once a week, or that exercise class, etc. Taking care of yourself is actually taking care of the person who has dementia, and that leads to better caregiving.

What is the biggest issue care partners come to you with?

Many of the care partners I see don’t realize how much grief they’re dealing with. They haven’t identified it as such. That’s partly because we think of grief as someone has passed away and then you begin grieving. But with dementia, there’s a lot of grief along the way. It’s very different. I helped — along with my dad and my three sisters — take care of my mom who had cancer. The difference was my mom was actually a part of our care team. I would lay down in her bed and put my head on her lap, cry and say ‘I hate this disease.’ And she would rub my head and tell me it was going to be OK. You can’t do that with dementia. It’s a very lonely road. I try to put words to the grief they’re feeling to help them process their emotions while reminding them that it is also important to keep living.