When we tend to think of caregivers, we usually think of people who are in their 50s or 60s caring for their parents, but the demographics are changing. As a millennial who has been a caregiver for my grandmother for years, I was shocked to learn that I’m not alone. One in four caregivers are millennials (between the ages of 18 and 34). Caregiving can be very rewarding, but it can also be very grueling. It’s tough to watch your grandmother who has been your best friend since the day you were born suffer from Alzheimer’s Disease, not know who you are, hallucinate for hours or days at a time, cry for her mother or your late grandfather who passed away 20 years ago from the same disease that you hope and pray you won’t get nor will your mother who is the kindest and strongest person you know.
AARP Caregiving expert, Amy Goyer was a caregiver for her grandmother, and she is now a caregiver for her father who suffers from Alzheimer’s Disease. She knows all too well about the struggles and rewards of caregiving and she just wrote a book called ‘Juggling Life, Work and Caregiving’ which will be released on November 7th. Amy was kind enough to join me for an interview yesterday to discuss who family caregivers are today and the struggles they face, the importance of finding time for yourself and how to do so, why you can’t do it all on your own and need a caregiving team, and AARP’s Caregiver Kindness Contest.
Candace Rose: Who are family caregivers today?
Amy Goyer: “We know there are about 40 million family caregivers in the U.S., and one in six adults are family caregivers. It’s a growing phenomenon and we know that 40% are now men. We know one in four are millennials between the ages of 18 and 34, so we’re not just talking about baby boomers. It’s really across the age range because we also have many caregivers over the age of 75, and they’re more likely to be doing it on their own, which is so surprising without help from other relatives or paid professionals.
We also know that 60% of family caregivers are working, so they’re doing a fuller part-time job and at the same time an average of 18 hours a week caring for loved ones. Many of us are doing much more than that. Combine that and it’s like they have two full-time jobs or two part-time jobs. The value of the care all these caregivers are giving is about $470 billion dollars if we were paying someone to provide that care.”
Candace Rose: Why do you think we’re seeing more young caregivers today and the caregiving demographic changing?
Amy Goyer: “I think we are seeing as baby boomers are aging, we’re going to have people who have smaller families, there are going to be fewer people to actually care for the folks as they age. We’re going to have a smaller care ratio which means people who are caregiving are going to be taking on more responsibility by themselves. As we see that, we see the younger generations pitching in to help, we see baby boomers who are also needing help. We have younger caregivers who may be helping someone with temporarily fighting an illness – dealing with a hip replacement or a knee replacement surgery things like that, and then we also have people who are actually caregiving for their grandparents or their great grandparents.”
Candace Rose: What are some of the challenges family caregivers face?
Amy Goyer: “We are dealing with an awful lot. As I said, we’re juggling work because 60% are working. We’re also dealing with financial challenges. 68% of us are spending our own money to care for loved ones, I know I certainly have and that’s a time in our life when we should be saving for our own retirement, trying to deal with things in our own lives, so there’s that financial challenge. In my book ‘Juggling Life, Work, and Caregiving’ I focus a lot on these challenges – whether it’s dealing with the legal issues, the financial issues, healthcare for our loved ones and taking care of ourselves. I have a whole chapter on taking care of ourselves because we tend to put ourselves at the bottom of the list. We’re really focusing so much and putting out so much in caring for our loved ones and often for other family members too – our kids, our spouses, other people in our lives.
We put ourselves at the bottom of the list and we need to do the opposite. The first chapter in my book is about assessing our own needs because we’re the ones who are pivotal in the situation in terms of we need to look at our needs, our resources, what we can offer, what our loved one’s needs are and then we need to see how we can fill the gap by building a caregiving team.”
Candace Rose: Caregiving can be very rewarding but it’s also very stressful. Do you have any tips for caregivers who are feeling burned out or feel caregiver guilt?
Amy Goyer: “Exactly. I can do anything but I cannot do everything. I look at it very practically, we don’t expect our cars to run on an empty tank of gas, but we expect ourselves to? It doesn’t make sense. We need to be very practical about this. We need to fill our own tanks so that we have the energy to do the care that we need to do. We need to look at lots of different ways to fill our own tanks. It’s not being selfish, it’s truly being practical. I look at real quick tank fillers, whether it’s grabbing a cup of coffee, walking around the block, chatting with a friend, going on Facebook and checking in with friends and feeling that connection to more things that I sort of consider a ‘premium fill up’ where you get away for a couple hours. You can find out about respite care in your community, there may be volunteer programs or sliding fee scale programs that don’t cost so much, so that somebody else can be taking care of your loved one and you can go take care of yourself. You can go out with a friend, you can go to a movie or go just do nothing for a few hours to not be focusing on taking care of someone else.
You need periodic tuneups where you’re going to go on a vacation, you’re going to go on a retreat and do something to really get away, and then you need the routine maintenance. We need to take care of our own health, we need to exercise, we need to eat right, we need to go to our doctor checkups. I’ll tell you what, sleep has to be a top priority. If we’re exhausted, it makes everything else twice as hard. It robs us of our ability to cope, so sleep for me is just a huge priority in my caregiving experience as well.”
Candace Rose: It can be very frustrating as caregiver when you aren’t getting help from family members. Do you have any advice for those who may be feeling upset or frustrated because you’re the one who is doing the caregiving on your own and they aren’t helping at all?
Amy Goyer: “Yes, and that’s why I encourage people to look at it as a caregiving team. There are a lot of different roles on that team. We tend to think in our minds what we need the most help with. What I need to encourage you to do is look at the people you want to help and know what they’re able and willing to do.
Again, you have to just accept that some people are not going to do what you would prefer for them to do, but maybe then can do something else. For example, some people will be hands-on caregivers, and some people are better with the hands-off. Someone who is hands-off, asking them to come and help your mother take a shower, they’re going to find a reason not to do that…but maybe they’re very comfortable with finances and they could manage someone’s finances from afar or they’re happy to go out and organize the garage for you because you just don’t have time to do that or they will go and run errands, pick up prescriptions, do all kinds of other tasks of caregiving that are all so equally important. They may just be willing to sit with your mother and watch a movie for a while so that you can get a break. Looking at what people are willing to give and able to give and filling those gaps in different ways and looking at your caregiving team non-traditionally. My mom’s hairstylist would come to her house and do her hair for her sometimes when I couldn’t get her to her appointments. He was an integral part of my caregiving team because he made that possible. Would it have been nice to have someone else who could take my mom? Yes, but if that isn’t going to happen, figure out another way and build your team very creatively.”
Candace Rose: Can you tell us about the new AARP contest that encourages people to do acts of kindness for caregivers?
Amy Goyer: “Absolutely. Coming up in November (November is National Family Caregiving Month) and I’m really excited that AARP the magazine has an incredible article about 24 hours in the life of a caregiver. We profile several caregivers across the country, created a very moving video that shows the joys and the challenges of caregivers – go check that out. It gives you an idea of what caregivers are going through. Then we have a list of 100 things that people can do to be kind to caregivers. We are launching a Caregiver Kindness Contest and that is at AARP.org/CaregiverKindness. You can go there and submit what you’re doing.
We’re encouraging people to mow someone’s lawn or run an errand for them. I have someone who sorts my mail, which is incredibly helpful. You might bring dinner or go sit with their loved one and spend some time so that they can get a break. Do these kinds of things and submit them at the Caregiver Kindness. We’re going to choose 12 winners to split a $10,000 cash prize in March, and you can submit once a week until then. We also have a virtual caregiving fair coming up on November 19th from 12 to 4 pm eastern where you can go online and visit the virtual exhibit hall, watch presentations in the auditorium and mix and mingle at the lounge that I’m going to be hosting for four hours and have other experts there as well so you can get some good input with experts, but also other caregivers because we often learn so much from ourselves/each other.”
Candace Rose: Well, thank you so much, Amy. Where can we go for more information and to purchase your book?
Amy Goyer: “Well, you can go to AARP.org/Caregiving for the AARP Caregiving Resource Center. There are tips and tools, practicals, connect with experts, videos and all sorts of things there. My blog is found there. My book ‘Juggling Life, Work, and Caregiving’, you can pre-order it now on Amazon or at Barnes & Nobles, and then you can get it after November 7th for purchase.”