Being a kid is fun. Having a kid is fun. Raising a kid is fun.
What is less fun is when the kid you have had, the child you have raised, has turned into an adult, with kids of his or her own, and you have become the matriarch or patriarch of that family. The problems start when an adult child has to be the adult; the adult child has to lose the child part, to be a parent to their own children — and almost to parent their parents.
That situation is never easy, although it comes with many nuances and variations. There are the parents who, due to health concerns, have to be placed in a facility. There are parents who want to stay in their own homes but have to be supervised. There are parents who, due to dementia or Alzheimers, no longer have the ability to make any decisions.
Whatever the case may be, the responsibility to care for their parents usually falls on one child, even if there are many siblings.
This is not an easy place to be, stuck in the sandwich generation. We love our parents and our parents love us, but when the roles switch and our parents no longer are there to take care of us, the shift of power can cause a lot of sadness, tears, and heartache on both sides.
Where can we start to make the process easier? Is there a way to feel less guilty when you cannot always run to see your parents and help them change the light bulbs or take out the garbage? How do we draw the line?
And then there are the more substantial issues, the ones that can totally depress these members of the sandwich generation, when we have to deal with things like power of attorney documents, wills, and health care proxies. With putting in stair lifts and selling childhood homes. Who wants to be an adult then? We want our parents back! They are supposed to be our protectors!
“Older parents realize that they aren’t capable of what they used to be,” Susan Braun, a licensed professional counselor in Wyckoff, said. “They need to learn to accept where they are in life, and if capable and competent, make those decisions for themselves before someone else makes it for them, whether it be moving or getting rid of the car. It is all a process, and a difficult one at best.”
I know this all too well.
Three years ago, something happened to my dad, something neurological and his doctors still aren’t quite sure what it is. The way I describe it is that after a few steps, it would appear that he almost forgot how to walk. He would take a few steps and then he would start to shuffle. But physical ailments aside, this is when I realized that I had become part of the sandwich generation. And I talk about it. I talk about it a lot. I have even started a support group, which meets every third Tuesday of the month. (Our next meeting is on August 15, at CareOne of Teaneck; see box for more information.)
Why did I start this support group? Because like everything else we go through in life, if you haven’t gone through a similar situation, you just can’t relate. You mean well when you ask, “How is everything?” But you never really know what to do with the answers that come flooding out, along with a big batch of tears.
The support group enables its members to share in an environment that is safe and supportive. It is important that those of us in the middle of the sandwich take care of ourselves. Of our own emotional needs, so we stay sane. Of our physical needs, so we stay healthy.
The group also gives us a chance to share things that we have learned during the process of caring for our parents. For example — do you have a parent who served in the military for at least two years? If the answer is yes, your parent is entitled to a myriad of services, ranging from basic medical care to chair lifts, social services and light housecleaning. I never would have known this if someone who had gone through it hadn’t told me about it.
Part of caring for our parents is making sure they are safe and well cared for. One of the ways to do this is through a home health care agency. I recently discovered that my friend’s husband, Ethan Keiser of Teaneck, is the president of Synergy Home Care, a Bergen County-based company that supplies aides to those families that need them. “I went into this business because I saw how hard it was for my parents to take care of their parents, and I don’t want others to have to do the same,” he said. “We” — he’s including Synergy’s director of operations, David Bersson of Teaneck — “could interview 20 candidates and hire only one, because we only want to hire people who we would feel comfortable taking care of our own family members.” Synergy interviews clients and figures out which aide to match with which client. “Some clients want someone to talk to for four hours and others just want someone to sit with them and be silent,” Mr. Keiser said. “We make sure we make these matches so the client feels comfortable and safe.
“When a parent lives with their child, having an aide gives the child a much-needed break,” he continued. “When a parent or parents live alone, having an aide for a four-hour visit gives the child peace of mind that their parents have company, their home is cleaned, their meals are cooked. Perhaps they want to go for a walk or need a ride to the doctor. Having a service like this is good for everyone’s peace of mind.”
I talked to Ethan about my situation for quite a while, and he totally got it. That’s because not only does he want his business to be successful for financial reasons, but, more importantly, he sees how many of his friends are now a part of this sandwich generation. He wants to be able to provide the best care possible for these friends’ parents.
It is very hard for parents to accept help. And that is totally understandable because it is a relinquishing of independence. So what are you supposed to do when your parents need an aide or physical therapy, but they insist on refusing it?
It is important to address your parents’ physical and safety needs, but there are other issues to keep in mind as well. Sarah Hiller-Bersson, a geriatric social worker with 14 years of experience as a hospital discharge planner, a geriatric community social worker, and a geriatric psychotherapist, notes the importance of addressing both an elderly person’s mental health and the caregiver’s stress, since one impacts upon the other.
Ms. Hiller-Bersson, a licensed clinical social worker, now helps clients and families in the community by providing private duty caregivers through Synergy. “You probably have heard of taking a holistic approach to health,” she said. She believes in the importance of a holistic approach to the elderly. “I reinterpret and apply that term” — holistic health — “to look at the client’s whole situation, a person’s physical abilities, their safety, their emotional state, and the caregiver’s well being,” she said.
The reason parents who need help sometimes refuse it, she continued, is because often as people age they develop cognitive inflexibility, which looks like pure stubbornness. No amount of logic or reason can change the minds of people with cognitive inflexibility, because they lack the ability to consider any reality other than what they believe reality to be. They are incapable of recognizing the potential possibilities in alternative ways of looking at situations. It is unlikely that you will convince them that home care is what’s best for them if they refuse a caregiver.
“You have to appeal to your loved one’s personal goals, concerns, beliefs, and core values,” Ms. Hiller-Bersson continued. There are many ways to address the refusal, she said, but individualizing the approach works best. Try suggesting to your parent that home care would benefit you as the primary caregiver; you’d feel less stressed. Explain how you would prefer to come to your parents’ home and not have to do the dishes and laundry, or cook meals for the following day. That would free you up to spend more time with them, talking or playing cards. Describe the relief you would feel knowing they’re safe and that they have someone with them, helping them with their personal care needs and ensuring their safety.
It took almost nine months for my dad to agree to an aide coming over once a week. Nine months. The aide takes him to outpatient physical therapy once a week, but he really needs PT more than once a week. It seems that the only thing that all of his doctors agree on is that he needs to keep moving.
If your parent is at home recovering from a hospital stay, or a stroke, and getting him or her out of the house isn’t so easy, this could help. When my father was in that situation, I discovered the joy of in-home physical therapy. My dad would be happy just sitting in his comfortable recliner all day — and I know that other parents feel that too. Add to that the fact that some of them can no longer drive and the situation becomes even more frustrating, for them and for you. And if you have a parent who never liked to exercise, you have even more of an uphill battle on your hands.
“Education is the key to reducing resistance and improving a patient’s outlook on what is possible,” Jessica Lowy, a physical therapist who owns Balance Body Rehabilitation, a physical therapy practice in Bergenfield. said. “We can educate our family members by providing them with information that demonstrates the importance of therapy and exercise and how it can positively effect their daily routine and independence with function.”
In-home physical therapy also helps the therapist understand the patient’s life more completely. “It gives us more than just a keyhole perspective into a patient’s daily routine, and allows us to implement a home program that will be more effective and will allow for improved compliance,” Ms. Lowy continued. “It also allows us more time with a patient one on one, than it would in a clinic setting.
“Many of our patients see themselves as completely independent and want to be able to handle their own health care decisions on their own. However, they do often need assistance. The majority of our elderly patients do have a family member involved in their health care decisions and planning.”
With more than 10 years of experience, Ms. Lowy and her business partner, Michal Porath, another physical therapist and the co-owner of BBR, both stress the importance of doing a home safety inspection. “A house evaluation is first and foremost,” Ms. Lowy said. “Having a therapist come in and evaluate the home space and what can be modified is key. Anything from grab bars, to removal of loose rugs to minimize trip hazards, to modifying the kitchen and bathroom so that patients can be more independent.”
One of the emotional somersaults the sandwich generation must do is make sense of the fact that while their parents used to make sure that their children were safe, now the children have to do that for their parents. And they still have their own children to take care of. Diane Thomson of West Orange is a professional organizer and coach; she’s also the owner and operator of Thomson Blueprints. She likes to work with clients before her services are necessary. “I would ideally assist clients to prepare for the potential ahead of time, anticipating the amount of time, energy and attention caring for both parents and children would take,” she said. “When people find themselves being sandwiched they may feel they cannot keep up with their own lives. As a result, routine and important tasks fall by the wayside. The house becomes chaotic and disordered, while they are torn in multiple directions at once.
“Therefore, I would coach them to determine their best strategy to be the son/daughter and parent they want to be in the face of the challenges. It is a matter of recognizing all that is required of them, what they are not doing that they want to do, determining a strategy, identifying resources and support, and recognizing limits — and doing this all while also maintaining some form of self-care.
“That is not an easy task.”
Another part of being sandwiched is all other responsibilities that come with it — the day-to-day tasks, the emotional and physical challenges, the financial and legal issues. Paying the bills, finding out what kind of insurance your parents have, and so many other things.
Legally, it would be ideal if the parents have all their affairs in order, but most of the time they don’t. Charles Kleiner, a lawyer with a practice in Hackensack specializes in trusts and estates, says, “The adult children in these situations should have their affairs in order, even if when they are doing this, their parents aren’t in need of their help. Nobody wants to think about the future, but if the adult children have their legal issues in order, they can set an example for their parents and guide them to do the same.”
When you talk to an elderly parent about their legal affairs, it is best to do it with the help of a social worker, Mr. Kleiner added. “It is a process that doesn’t just happen overnight, and there is a lot of trust involved.”
Long-term-care insurance is another piece of the puzzle. It can be very helpful in covering many different expenses. But sometimes it is sometime difficult to navigate these policies. We activated my dad’s policy after he was hospitalized last summer. So what have I learned about long term care insurance? It is designed so that the person who needs it cannot possibly fill out all of the paperwork by himself. If you do not have a family member to help you, you need an advocate. It is impossible for an older person, especially one who is impaired, to do this on his or her own.
Edgar A Brisbon of Maplewood is a certified senior advisor from the Society of Senior Advisors and the CLTC designation from the Corporation for Long Term Care. I met him when he came to one of my groups, thinking that it was an informational session rather than a support group. (The support groups are confidential, but he was there in a professional capacity, so I am not breaching any confidentiality.)
“When working with children of individuals facing long term care needs my focus is to provide navigation, education, and advocacy to logistically address the care plan and identify and facilitate available and appropriate resource,” he said. Children whose parents do not need care immediately nonetheless should start a conversation about it, “to better understand the desires of their parents, gathering information on income sources, financials, and insurances. For folks with parents already in need of care, all of the above still applies, but I encourage children not to be afraid of seeking knowledgeable help in navigating the process.”
It’s not easy being part of the sandwich generation. I never thought that I would be doing this. I don’t think that any child does. Our parents are supposed to be our caretakers. We all know that! Don’t we? When did these roles switch, we wonder. I am not going to sugarcoat it. This is really hard.
Some of the professionals I have quoted in this story have been very helpful to me. Without them, I would have had a nervous breakdown. Is that too honest?
What I have learned is that you need the right guidance and the right support, but what you need most is a tremendous amount of patience. Nothing gets accomplished when everyone screams at each other. Children want what is best for their parents, even though sometimes the parents do not believe it. With communication, and professional intervention if necessary, everyone can be on the same page.
Banji Ganchrow lives in Teaneck and has a masters degree in social work. Write to her at Banjiari@aol.com.
Who: Writer/columnist/social worker Banji Ganchrow
What: Offers a support group for the sandwich generation
Where: At CareOne, 544 Teaneck Road in Teaneck
When: On Tuesday, August 15, from 7 to 8:15 p.m.
Why: To provide a place to talk, vent, and share information
For more information: Email Banji at firstname.lastname@example.org.