No parent plans on being a special needs caregiver to their child and no child plans on providing elder care to their parents. Yet in an age when autism and developmental disabilities are on the rise, and baby boomer parents are expected to live longer than ever, the possibility of taking on a caregiving role is a reality for many of us.
When my husband and I decided to have children, we made a lot of plans. We made plans about childcare and diapers, preschools and pumping breast milk. Once my daughter was born I was proud of us for getting our wills done and buying life insurance within the first month. I felt like we were planning for the future. But when our oldest and then our youngest were diagnosed with autism, nothing I read in the baby books prepared me for the caregiving life.
Start with Your Own Financial Housekeeping
As with any other potential crisis situation, the better shape your personal finances are in when you start, the better you will be able to weather the journey. Paying down high interest loans, not accumulating debt and contributing regularly to retirement and savings accounts is always a good place to start. I still remember the day we sent off our last student loan payment — two months before our oldest daughter was born. What a blissful feeling of relief!
Assess Your Resources
I’ve found it’s a good idea to do a full assessment of your net worth every couple of years. All accounts, holdings, real estate, jewelry, and anything else that has cash value should be included. If your caregiving is for an elderly family member, sit down and talk to them about their resources as well. What kind of health insurance, life insurance, disability insurance and retirement savings/pension do they have? What about Social Security income? What happens if they are no longer able to live in their own home? If they are moving into your home, what kind of adjustments (like wheel chair ramp or special shower) need to be made? If you have siblings or extended family who are not able to personally help in the daily caregiving, what can they contribute financially to help care for their loved one? Go over wills and living wills (both theirs and yours) to make sure everything is current and complete.
Look for Outside Resources
If your loved one is disabled, there are outside resources to call upon for help. Since both of my children have autism, they are both enrolled in the Arizona Long Term Care Service and have their own Medicaid Insurance through the Arizona Health Care Cost Containment System (AHCCCS). Ask your pediatrician or doctor about the Medicaid/Medicare agencies in your state. There are also caregiver support groups on both the national and local level, like: the Family Caregiver Alliance, AARP Caregiving Support, and National Family Caregiver Support Program
Don't Go It Alone
When my daughter was first diagnosed, friends and family asked me what they could do to help. I smiled and thanked them, but I was so overwhelmed that I just couldn't think of anything they could do. Here is a short list of helpful things that others can easily do for you:
- Cooking: Yes, please bring some healthy, nutritious meals over in microwave- and freezer-safe containers.
- Cleaning: A once-a-week or twice-a-month cleaning service just might be the very best thing anyone can do for someone adjusting to the new job of caregiving.
- Childcare: Just sitting with the kids to watch TV for half an hour so mom can take a nice hot bath and flip through a fashion magazine is a gift.
- Shopping: Personally, I recommend putting everything you can on recurring order from Amazon, or somewhere else that delivers staples, and then make a list of perishables that you need from the store. Let someone else do the shopping for you.
- Respite: This is hard for the parents of special needs kids because you never want to leave them with a stranger who doesn't know them well. But at some point, you will need to find the right person so you can spend some time on your own and maybe even have a date with your spouse.
Even though “caregiver” is rarely included on anyone’s list of what they want to be when they grow up, it can also be an amazing journey that brings a family closer together. The best way to ease into the role with grace and keep it from feeling like a crisis is to recognize the possibility ahead of time and take some steps to be prepared.
Jen Turrell is a member of the DailyWorth Experts program. Read more about the program here.