older adult couple with grandchild

When Your Parent(s) and Your Child(ren) Have Special Needs

Written By Katherine Swarts
Read Time 7 Minutes

The sandwich generation is defined as a subset of family caregivers who are taking care of both an adult loved one and a child. Even if your children are self-reliant for their age and your parents just feel safer living with you, you still juggle more responsibilities than the head of a one- or two-generation household.

And you may have far worse concerns than driving your children to school and your mother to the library. Many people are dealing with “jumbo club sandwiches”: their parents have health problems ranging from Alzheimer’s to osteoporosis; and at the same time, one or more children have autism, cerebral palsy, Down syndrome, or any number of special-needs conditions.

If you’re in that situation, you probably have more than your share of worries:

  • Keeping a full-time job while simultaneously fielding family demands
  • Finding extra help for meeting your family’s needs
  • Avoiding caregiver burnout
  • Tracking multiple doctor/therapist appointments, plus medications, for multiple people

Take Strictly According to Prescription

If two or more household members have limited mental competence and are taking multiple medications, you’re all at high risk for the worst-case scenario: medication mismanagement and misdose. It’s easy to miss a dose—or take an extra—when caretakers are overloaded and stressed. And the consequences can range from worsening symptoms to fatal overdose.

Cristen Reat, BridgingApps Co-Founder and Program Director: The pandemic caused such high stress in our family, there were multiple occasions where we accidentally forgot our son’s medications or double dosed him. Those calls to Poison Control were some of the worst experiences of my life.

Dr. Paul Hines, CEO of DoseHealth.com, which manufactures the Dose Flip/Dose Anywhere medication-assistance system: Higher-needs populations tend to take more meds, and some of those medications are so delicate to get right [i.e., a missed dose may not be correctable by simply taking it later or letting it go]. Making a dent in the overall problem of medication non adherence can significantly reduce emergency room visits.

Don’t Go It Alone

Especially where medication nonadherence or some other life-threatening situation is a risk, you’ll need extra help to keep your household functioning. If there’s a formula for becoming your own worst enemy (and a potential threat to your dependents), it’s: Let pride convince you that you can and should handle everything by yourself. All you’ll accomplish with that attitude will be a fast burnout from fatigue, resentment, and lack of self-care.

No doubt your loved ones with special needs have doctors and/or counselors, but consider also:

  • Day care or respite programs to relieve the pressure on you, and to provide a broader range of experiences for your loved ones
  • At-home caregivers or housekeepers to further reduce your responsibility stress
  • Caregiver support groups
  • Therapy for yourself (you don’t need to have a diagnosed illness or any major personal issues—anyone can consult a therapist to get perspective and advice for any challenge).
  • Therapy for the family as a unit

Show Respect

You may also find that some of your best household help comes directly from family members with special needs, so don’t automatically dismiss offers of help—or rule out asking for it. Even those with severe mental impairments are capable of learning new skills and enjoying certain types of work.

They’re also capable of feeling hurt and resentful when they sense attitudes of, “You’d never get it right anyway.” Whatever a person’s age or special needs, they are as entitled to respect as anyone else. Give everyone their full share of responsibility, attention, and empathy. This includes the right to contribute ideas and the right to accept only the help they actually need.

Alaina Gallagher, DoseHealth Chief Revenue Officer: A good medication reminder system works alongside people rather than interrupting them. It gives them a feeling of independence and being in control of their own lives, which inspires them to take on more new challenges.

If you really want to understand your loved ones, try living like them for a day:

  • Let them plan the agenda and lead the activities.
  • Practice functioning with a physical impairment: blindfold yourself, tape your elbow in a straight-arm position, borrow a wheelchair.
  • Keep your mouth shut and communicate entirely by language app.

Gallagher: At our office, everyone uses the Dose Flip [smart pill-and-vitamin dispenser] and files a weekly team adherence report. The personal experience helps us identify others’ needs and head off potential problems. Speaking for myself, before I worked here I was always forgetting to take my allergy meds until I actually experienced a flare-up. The quality-of-life improvement from sticking to the right schedule was amazing.

Plan Ahead

Among the best stress-management tools is advance planning. Have a system (posted chart, dispenser tray, alarm timer, specialized app, etc.) to keep track of medications. And take precautions against other special-needs-specific dangers:

Clear your home of tripping hazards, exposed sharp objects, and other potential sources of injury. (This will actually benefit everyone in the household.)

Take precautions against “wandering syndrome” (about 60 percent of people with dementia, and around 50 percent of those with autism, are prone to disappearing absent-mindedly and turning up blocks or miles away):

  • Keep doors and outside gates locked (after confirming you aren’t cutting off emergency fire-escape routes).
  • Alert neighbors to keep an eye open for special-needs family members who seem to be alone and wandering.
  • Keep notes on your loved ones’ habits and favorite places, so that if they do vanish, you’ll have an idea where to start looking.
  • If someone has Alzheimer’s or another mental disorder, and can’t remember your home address or text number, a special needs registry can provide tools for helping others help anyone found wandering.

Special-needs planning also includes planning for your loved ones’ future:

  • If your parents are becoming mentally disabled, talk with them about preparing a power of attorney to ensure you (or a trusted third party) can manage their affairs if they can’t.
  • For your children, be aware that future assets from your parents’ (and your own) will and life insurance may affect their eligibility for special-needs financial aid. Consult a lawyer to determine what financial arrangements will be in the children’s best lifelong interests.

User-Recommended Apps

Hines: When my grandmother was having med nonadherence issues, my aunt would have to call her at four in the morning to check up.

One blessing of living in the digital age is that artificial intelligence can take a lot of pressure off the human brain. Check the apps lists below to explore options for medication management and other tech help.

Medication management apps in the BridgingApps database:

Reat: The apps I find most helpful as a caregiver for children and aging parents are:

  • Carely Family: I use this app every day, as it allows me and my husband to post updates on my 93-year-old mother-in-law to help organize visitors so everyone doesn’t go on the same day. It allows for posting pictures and for sharing information about her mood, eating habits, and any other helpful information for visitors in her circle. It is also helpful for remote family members to stay up to date on her care and what she may need.
  • MyChart: I use this app several times per month to communicate with my son’s doctors for medication management, documenting symptoms, asking non-urgent questions, etc. Because my son has multiple disabilities and several chronic medical issues, this tool is a lifesaver.
  • CaringBridge: I used this mobile app and web-based platform when my father was injured and in the hospital. It allowed me to post updates and pictures to a care circle of family and friends, saving the time and emotional energy of calling everyone about every update in his care, prognosis, and progress.
  • Simply Sayin’ Medical Jargon – This is my go-to app for helping my son understand medical terminology, procedures, and equipment. It has built-in interactive features that are helpful for explaining procedures like x-rays, barium swallows, endoscopies, Echocardiograms, and other medical procedures that promote high anxiety.
  • Also: I wish insurance would cover more helpful smart tools to help families manage medications in more efficient ways. And I wish there was better pay and training for personal attendants to help unpaid caregivers caring for two generations. Caregiving can be extremely stressful and time-consuming. Thankfully, it is also very rewarding.

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