Prevention: Can you tell me about your personal experience as a caregiver?
Leeza Gibbons: I’m really proud to be among the many family caregivers out there. I always say we are the health care system in our country. This situation is not anyone’s definition of “happily ever after,” but so many people rise to become much more resilient and stronger because of these challenges. I know I did.
My family’s experience started with my mother’s Alzheimer’s disease. You would have thought we’d be prepared because we saw my mother’s mother with the same disease. But we got overwhelmed and felt helpless. My mother, like her own mother, struggled for more than a decade. She died in 2008. And then my dad—we never knew until he had a heart attack that he had coronary artery disease. He had complications from his by-pass surgery and was in rehab for a long time, so we’ve had a different experience with him that continues to this day.
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Throughout our caregiving, my siblings and our spouses have become very close, and that’s not always the case. Often, all the skeletons come tumbling out and it can be very difficult. But, we were fortunate in that we all had different things we offered to make it better. It is hard for some families to stay together on this. There’s always someone in a different place than you creating conflict or denial. It’s just the way it goes. So I always try to remind people, when that’s happening, the rest of the family is still hurting, even the ones acting out. Being flexible and forgiving—the two best F-words—are important, otherwise anger and disappointment can eat you up.
You know, going through this can feel like you’re on a sinking ship in the middle of an ocean, and you’re just abandoned by everything and everyone. That’s why I created my non-profit. It is so others experiencing this can find the help they need on this journey.
PVN: What kind of support or guidance does Leeza’s Care Connection offer caregivers?
LG: First, we connect them with others who’ve had or are having the same experiences, and I think that makes the whole journey much more supportive, manageable and rewarding. It also helps them plan and know what to expect, whether their journey is in the early stages or later on. We give family members tools and strategies to help them be more confident and competent.
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PVN: What kind of specific help or advice does the charity offer?
LG: Everything from education and access to experts, to therapeutic survival strategies such as Dance Therapy and journaling. We help families know they are not alone and that they can get through it without unraveling.
It is a tremendous blessing when families know the desires of their loved ones. We get so freaked out by these sorts of discussions that we just avoid them. So we try to help encourage the conversations. The very best thing we can do when our families are healthy is to make those conversations not so precious and so off-limits. Nothing is more relevant. So I’ve tried to do that with my kids—frequently let them know, and also write down, what my desires are and my hopes are.
Through our foundation, we encourage people to come up with a “five-wishes” list. It includes helpful questions and guidelines like, “What’s important for them in case they can no longer communicate?” It covers everything from the legal side and medical directives, to how one likes their hair brushed, their favorite music, and even the preferred smell of lotions. Whatever it is, the things that make one feel comforted. It helps guide people to be as specific as they can be, because that’s tremendously helpful later on for their caregivers.
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PVN: I would think starting those types of conversations would be very difficult for some families.
LG: Absolutely. With some families, we’ve found that they find it easier to print out something like an article on caregiving, and say, “Dad did you see this?” It can help to make it about someone else, and then backdoor into it. But for other families, the opposite approach works: let’s get everyone together and have a family meeting.
There are very unique and individual recipes for success. With people from the Greatest Generation, there’s a lot of pride and honor and respect for roles and hierarchy and protocol. And all that needs to be considered. It can be very easy to cross a boundary and shut things down, and so we offer help with all that.
PVN: With some in the Baby Boomer Generation now entering their last stage of life, I would think the issue of caregiver support would become even more important.
LG: In the past decade or so, I think this has become an issue of great relevance, and a key to our national health agenda. Better educated and better supported caregivers create better outcomes for care-receives, and this also mitigates the devastating effects of compassion fatigue, or what’s sometimes called “the worried-well,” like me. My mom had Alzheimer’s, my dad has heart disease, what’s going to happen to me? We need to keep that caregiver population from declining.
You know, we can’t cure many of these diseases. And for some like Alzheimer’s, we don’t even really have treatments. But we can look at the health of caregivers and do things for them. We know stress is a great risk factor for many diseases, and depression and isolation are also a factor, all of which are risks for caregivers. So there’s a lot we can do to deal caregivers a better hand.
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PVN: Like what?
LG: We want to encourage people to almost be their own best coach. Who’s on my team and who can help? You know, many hands make light work, and that’s true with caregiving especially. There are often many people who will help even though they’re maybe not family members, and so we don’t think about them. We can also spend so much time being angry or resentful of family members who maybe aren’t doing as much as we think they should. But that’s such a waste and a diversion from just getting on with it. So we really need to be honest about who’s out there, and we need to be comfortable asking for help, which is a big skill most of us just don’t have.
So we encourage people to have answers when people offer help. Know your needs, and record them somewhere. There are great apps for that now. CareCalendar.org is one of them. You can put in what you and your loved ones need, and invite friends and family to join the calendar. It will save you time, and it gives the people you know a list of things to do on certain days, and a way to sign up. It’s almost like an old-school potluck where everyone chips in.
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PVN: What other advice do you have for caregivers?
LG: You can’t make this thing perfect, and it won’t always be a good day. You will mess up and fail. It’s inevitable. But for many caregivers, that’s the part they find unacceptable to deal with.
PVN: What day-to-day advice would you offer caregivers—little things that can help them get through it?
LG: I can’t stress enough how important it is to take short breaks throughout the day. We forget that when we’re sleep deprived and dealing with an abundance of stress, we are likely taking shallow breaths. We need to take deep breaths to oxygenate the brain. We also need to keep moving throughout the day—even for five minutes now and then. That really is going to be a huge benefit.
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Also, aim for the B+. Perfect really is the enemy of good with caregiving. If you aim for the gold star every time, you will always feel like a failure. You need to know that everybody in this role feels guilty. If you’re feeling guilty because you’re impatient with a loved one, that’s a good thing to examine and try to change. But guilt with no constructive underbelly—guilt about a situation you can’t change—don’t put that on yourself. That doesn’t do you any good.
Another thing that’s very therapeutic—either with yourself and your loved one, or with the bigger family or group—is to get people together to talk about what you all love about each other. At Leeza’s Care Connection, one of our 10 Commandments of Caregiving is to honor sacred memories. So we recommend bringing in memorabilia like a flag or a record album, birth announcements… just little things that stimulate conversations. Especially if your loved one has dementia, it’s urgent that you go on record with your feelings and talk about the value of your loved one’s life and their legacy. We do it through a program called Memories Matter, where family members basically interview each other, but anyone can do this with a phone camera.
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If you can record these things, that’s so valuable. People always tell me, the sound of a loved one’s voice and laughter is something that changes over the course of chronic illness. To be able to have that on record, and to use that as a reset is really a lovely thing. So any kind of video diaries or journaling is all very therapeutic when you’re caregiving and trying to remember your loved one, and also while you’re grieving after loss. Whenever you can, focus on what’s left instead of what’s lost.