Crisis of Care - 11 Million People Are Raising Kids and Caring for Parents. Here’s One Therapist’s Advice for Them Crisis of Care - 11 Million People Are Raising Kids and Caring for Parents. Here’s One Therapist’s Advice for Them

Karin Murphy is a licensed professional counselor based in Doylestown, Bucks County. She wants sandwich caregivers to know they’re not alone and that it’s OK to ask for help.

Pennsylvania has one of the oldest populations in the nation, with 2.4 million people—or 19% of all residents—over the age of 65. That number grows every day, as  does the number of seniors requiring care. Most often, that care falls to family members, such as spouses or adult children. 

In the case of adult children, many of them are forced to juggle care for their aging parents while simultaneously raising their own young kids. These “sandwich generation” caregivers—most of whom are women—are a growing demographic in Pennsylvania and across the country who face unique challenges that have often been ignored by lawmakers. Many feel overwhelmed, experience financial and emotional distress, suffer mental and physical health consequences, and feel isolated in their care responsibilities. 

To better understand the issues sandwich generation caregivers face, what help may be available to them, and what they can do to maintain their health, we spoke to Karin Murphy, a licensed professional counselor based in Doylestown, Bucks County, who focuses on grief and loss. As part of that, she also counsels caregivers who deal with anticipatory grief of the loss of a loved one that they know will come.

This interview has been condensed and edited for clarity.

The Keystone: How can being a caregiver affect your mental health and emotional well-being?

Karin Murphy: Sometimes proximity is a stressor. ‘I’m here, my parent or my sibling is in a state or a different area that I have to drive to that’s not convenient to my home.’ There’s sometimes financial concerns, like ‘I can only do so much to care for my loved one. I would like to be able to hire support, but there’s just not the resources to do that.’ So that can cause stress. 

If it’s actually an adult child caring for a parent, sometimes the stress is actually touching on something from an issue that stems from childhood for that adult child. Sometimes the stress becomes the dynamic that had existed in the relationship, and now it’s being strained or maybe coming back up to the surface because there’s more interaction with this particular parent. 

There’s also just the physical toll of trying to do everything for everybody and not feeling like there’s any time for the person who’s the caregiver. A lot of times there’s that idea of, ‘Well I have to take care of everybody else first, and then, whatever is left over I will do what I need for myself.’ 

There’s this idea that there’s just not going to be time in the day for that adult to be doing what they need to do for themselves because of all the different aspects—child care, they’re likely working full time or at least part time, doing all the things that needs to be done at home, as well as whatever they’re doing for their loved one that they’re carrying for. 

Those are some of the more universal things that you hear. A lot of times, too, there’s that emotional stress of, ‘I don’t feel like I’m doing a good job, I need to do this perfectly. I don’t want to let my loved one down.’ 

That really can take a toll as well—especially if this is a parent/adult child relationship—because there’s all kinds of expectations that maybe were there when the adult child was growing up that they’re now feeling again, as they’re now having this role reversal of caring for their parents.

How can sandwich generation caregivers better manage? Are there resources you recommend? Or do you have any advice or tips? 

The truth of the matter is the resources are very limited. A lot of times people that are in this situation feel very isolated, feeling like ‘I don’t know what to do’ or ‘I’m doing something wrong. It can’t be this hard.’ But really a lot of it is, ‘OK, we have to kind of assess. What’s your support system like? Are people offering help and maybe you’re saying you don’t need it?’ 

Sometimes it’s taking a real honest look at, ‘Is this something that I can have someone come and help me with?’ And if you prefer to do the hands-on care or if you have to drive your parents to a doctor’s appointment because you want to be present for that appointment, then is there something else where you can accept help—maybe help with the kids at home so that you’re not trying to do everything. So a lot of it is kind of being honest with yourself and taking a look at ‘Is there a way that I can reorganize this?’ You don’t have time to do everything.

A lot of it is like—and I kind of hate to say this because it sounds like such a cliché—when you get on an airplane and they tell you you have to put your own oxygen mask on first, I think it bears reminding when you’re a caregiver, you have to take care of your own needs. If you’re not getting a good night’s sleep, if you’re not going for a walk, if you’re not eating well-balanced meals, you’re not going to feel like you have the strength to do all the things that you need to do. 

Sometimes it’s also that permission that we give ourselves that we don’t have to do everything. There’s ways that we can outsource maybe the parts of jobs that we can’t handle and that doesn’t say anything about us as a caregiver. We can’t do it by ourselves. We need to learn how to rely on others to help.

I know you’re not a policy expert or politician but from your perspective, what do these caregivers and families need? What would help them?

I really feel like if there were more adult daycare centers—that’s more specific for adults with dementia—so that they have a place that they can go that’s going to give their family a break, and that they know that their loved one is safe and being cared for, [that would help]. But the resources are hard to come by, and it’s difficult to find a caregiver to come into the home. Then, of course, we have everything with COVID and how that kind of upended everything over this last year and a half. I don’t think that there’s a lot of attention on this particular issue. 

Right now, it’s very much all handled family by family, and there’s not a lot of social support, and there’s not a lot that’s available. That’s certainly my impression.

Is there anything else you want to share or think is important to know?

This is going to obviously become more of an issue as the population continues to age. I think that when people who are making policy are having this issue personally, then it’s going to have a lot more recognition and feeling like things need to change. 

But it’s really important for caregivers to know that they’re not alone. This isn’t anything that you are the only one that’s going through. This is definitely something that’s becoming much more prevalent, and it does help to talk about it instead of trying to take it all on yourself.

Here are some resources available to caregivers and elderly adults in Pennsylvania:

  • Your local Area Agency on Aging is a good place to start. Enter your ZIP code to find the office closest to you and their contact information. They can help connect you to services and help you learn more about what benefits (such as Medicaid) may be available to you or your loved one, such as home health aides, adult day care centers, and other respite services.
  • The Family Caregiver Alliance provides family caregivers with care planning, wellness programs, financial assistance, and more. 
  • As the leading national resource for all things seniors, the AARP provides comprehensive information regarding in-home care, long-term care, medical care, financial and legal tips, and more.
  • Community organizations, such as the Jewish Family and Children’s Service of Greater Philadelphia, provide help in areas including caregiver support, care management, financial assistance, and counseling. They also help caregivers and seniors apply for assistance programs,  such as rent rebates, utility bill reductions, and the Supplemental Nutrition Assistance Program (SNAP), better known as food stamps.
  • Local organizations, such as Legal Aid of Southern PA, can help seniors in Bucks, Chester, Delaware, and Montgomery counties across a host of legal issues, including elder abuse, Medicaid, Medicare, nursing homes, and waiver services. No matter where you live in the state, the Pennsylvania Legal Aid Network is a good resource to find legal services in your area.
  • The Alzheimer’s Association provides care, support, and information to those Pennsylvanians with Alzheimer’s and other forms of dementia.
  • The ALS Association helps people with ALS by providing resources, information, and connections to possible treatments.

Part One: Family Caregivers Struggle with a Broken System

Part Two: The Financial, Mental, and Physical Toll of Being a Sandwich Caregiver

Part Three: A List of Resources Available for Pennsylvania Caregivers

Part Four: Pennsylvania and America Are in ‘Huge Trouble’ Unless We Help Families With Caregiving