Nothing can prepare you for the moment you find out your child has a disability. It slams into you like a freight train. As we pick up the pieces of our former selves and put them back together, we become more informed, worldly, and compassionate people. It’s a painful but empowering experience.
The life lessons we’re constantly learning from this experience can help us in other arenas in our lives. We don’t sweat the small stuff anymore. Because the small stuff is nothing compared to what we’ve been through.
We handle the big stuff better too. Those of us in the “Sandwich Generation,” people in their thirties, forties, and fifties who are caring for our children and aging parents at the same time, know this all too well.
Granted, it is harder to help out our parents if we have a child with a disability. Time and money can be tight because so much of it goes to the additional needs of our children. But the knowledge and strength we’ve acquired through helping our child goes a long way in helping their grandparents.
I learned this first hand recently when my father suffered a devastating heart attack. Through the pain and panic, you know how to power through. The parallels to my son being diagnosed with Down syndrome at birth and then spending 2 weeks in the NICU were very apparent.
Director of the Center for Family Involvement Dana Yarbrough has been living in the “sandwich” for some time. She said, “It was easier for me to help out because of being the only child in my family who had a child with a disability. I was very familiar with the ‘systems’ and terminology.”
Here is some insight on how the needs of these generations cross-over and how we can help.
DOCTORS ARE NOT GOD
We put so much faith into our medical professionals. But they do not know everything and they don’t always have your family’s best interest in mind. Do not hesitate to get a second or third opinion. Never feeling bad about asking the same question more than once. Do your research. Take notes. Keep files and paperwork together. Talk to others who have been in similar situations.
Most importantly, trust your gut. You know your parent better than anyone. If you see changes – negative or positive – let the medical team know. You are the best advocate your loved one has.
CREATE A WILL AND A LIVING WILL
Make sure you know what your parents’ wishes are before they are unable to speak for themselves. Get it in writing. If you can’t afford an attorney, there are templates and guidelines to follow online. When you are in the middle of an emotional roller coaster – your decision-making capacity will be clouded with your own fears and doubts. Making sure everyone’s wishes are clear now will make things so much easier when a crisis strikes.
YOU ARE YOUR LOVED ONE’S BEST ADVOCATE
All of the people coming in and out of your life to help care for your loved one are just doing their job. Sure, some of them care a lot. But they are not invested like you are. At the end of the day, they’re going home and forgetting about their hard day at work. For your family however – it’s your lives.
It’s on you to follow up with any therapy needed. You will probably have to make multiple phone calls to accomplish tasks that seem simple and straightforward. And you are going to run into people who will do the bare minimum.
You will have to be strong. You will have to be firm. You might not be liked. But none of that matters as long as you’re respected. If your child is in the hospital and respiratory hasn’t been in to treat them even though they were supposed to be 2 hours ago, demand attention. If your father has orders to sit up in a chair several times a day and the nurse isn’t making that a priority, talk to the charge nurse. Some people are only going to do the bare minimum. If they know you are watching, they are going to step it up.
And if you’re afraid to ruffle feathers – remember this – you are in the hospital because you need care that cannot be provided at home. If your loved one is not getting that sort of attention, what is the point of being there?
BE ON GUARD
Along the same lines, if you see anything out of the norm, question it. A bruise, a scrape, a soar; ask questions. It may be nothing. But it may be something. And if caregivers, therapists, aides, and attendants know your always watching, they’re likely to be more careful too.
When you discovered your child had a disability, you likely searched for all the ways you could get help for him and your family. You can use that knowledge for your parents too.
Federal guidelines require that all states provide some form of assistance to individuals with disabilities, whether that disability is there at birth, acquired later in life, or through aging. States have Area Agencies on Aging and Aging & Disability Rescource Centers who are there to help our senior population navigate Medicaid/Medicare services. Every state is different, so you will certainly have to do your research. If your parent never wanted to be in a nursing home or one parent is having a hard time caring for the other – it is a tremendous option to explore. It could help them retain some of their independence during a confusing and painful time.
No parent wants to hear their child tell them what to do when it comes to money. But you might be able to share with them why it is so important to move their funds around so their savings isn’t depleted through medical expenses and potential hospital, rehabilitation, assistive living, or nursing home stays.
It is a delicate conversation that might be approached better with a print out of research rather than you telling them what you think they should do.
Yarbrough knows how hard bringing up this topic is. “We needed to get my mother Medicaid eligible which meant removing her name from the house she shared with my father for over 55 years and getting her name off of other assets. Every state has different rules around time limits for removing assets so be sure to engage with an attorney specializing in elder law,” she said. “We also added my name to their bank accounts and drew up powers of attorney.”
RESPECT THE INDIVIDUAL
Just because our parents lose some means to care for themselves independently doesn’t mean they should lose their independence. We need to respect their wishes, their privacy, their everything. Even if we think we know what’s best, it’s still their life and their choices. We are there to help them, not tell them what to do. Ultimately what they want for their life as they age is their decision. Unless they are harming themselves or putting others in danger – we must back off.
“Some of our parents are from the generation who took care of themselves and couldn’t afford doctors, and kept things private,” said Yarbrough. “Have patience if your parent(s) need time to process what having these supports and services mean. I remember spending moths getting my mother (who has Alzheimer’s) connected to in-home supports to relieve some of the burden from my father. Two days before they were supposed to start, my father called and canceled them. He just didn’t feel comfortable having strangers in the home helping bathe my mother or giving him some ‘time off.’ A year later, he called and asked how to get the services reinstated! I had to respect the pace he wanted to set, even though it was much different than the pace I set for my daughter with disabilities.”
SAY YES TO HELP
If friends offer to help out, say yes and don’t feel like you owe them anything. A true friend really wants to help, no strings attached. Imagine if roles were reversed, would you expect anything? Probably not. And there will be a time in the future when they will need you and you are able to help – and that’s when you can return the favor.
In the meantime, if someone asks if there is anything they can do and they mean it, think of what they could do and tell them. Walk the dog while you’re out of town. Pick up a gallon of milk when they’re at the store. Walk your child home from school. Mow the lawn.
If your parents are far away and you can’t be with them, reach out to friends and family where they are to see if they can pitch in. People often want to help, but don’t know how.
Yarbrough has set up a system for her parents who live 12 hours from her home in Virginia in an ‘over 60 community.’ She says she’s established a signaling system with the neighbors. “If my father didn’t have the garage door up by 9:00am every day, one of them would call him. If he didn’t answer the phone, someone would go to the house to make sure all was okay (the neighbors have keys).” Yarbrough added, “When adult children of the neighbors heard about this, they all wanted the same signal for their parents!”
JUST SAY NO TO EVERYTHING ELSE
Now is the time to be selfish. It’s OK if you miss a few meetings. It’s fine if you can’t contribute to the bake sale. Decline a dinner party if you’re not up for it. When you are caring for so many others that you’re stretched thin, you need to do whatever you can to preserve yourself for those who need you most. The people you’re saying no to will understand.
TAKE CARE OF YOURSELF
We all know we need to do this, but how many of us do? When we’re “sandwiched” for caring for our children and our parents, however, it is of the utmost importance to make sure we’re also looking out for ourselves. It’s also extremely difficult.
Make little changes where you can. Go to bed 30 minutes earlier. Eat something nutritious even when all you want is a cheeseburger or a pint of ice cream or both. Go for a long walk to blow off steam. Listen to relaxing music in the car. Spend an afternoon binge watching something ridiculous instead of doing what you should be. And most importantly – try not to feel guilty. It’s easier said than done, but we’re all doing the best we can.