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Organizing a Team
By Stephanie Mensh, wife of a stroke survivor Paul Berger
Create a Calendar, Know Where to Go for Help
Bringing my husband, Paul, home after he suffered a stroke was the most frightening thing I had ever faced. I found myself in charge of Paul’s health, recovery, personal care and all our financial, legal and household concerns. He was in a wheelchair, unable to talk and needed intensive speech, physical and occupational therapy to recover his independence. I recognized I couldn’t do some of the things Paul needed. My first caregiver team included:
- My neighbor who built a ramp up the few steps into the front door.
- A health care professional friend who located outpatient therapy services.
- The receptionist in my office who helped me to find a companion to drive Paul to appointments and help around the house while I was at work.
- Friends and family who brought meals and stayed with Paul when I had to work or run errands.
Organize Your Calendar
The first step in building your team of caregiver helpers is to take a calendar and pencil in important dates:
- Holidays, birthdays, graduations and visitors. Include medical appointments, filing financial or legal forms, taxes and other dates you can’t miss.
- Sketch in weekly and monthly items such as billpaying, hairdressing and grocery shopping.
- Plan your daily routine. If you work, note when you leave and return. Note the dates and times the survivor will attend therapy or other appointments.
Tip: When scheduling, remember, stroke survivors may need more time to get ready, or eat snacks and take bathroom breaks, or transit to appointments.
Help for the Survivor’s needs
The helpers needed to accomplish the daily, monthly or special activities will depend on the survivor. For survivors with significant medical and personal care needs, consider a home health agency that offers nursing evaluation and supervision and trained personal care aides.
Tip: Some insurance coverage might be available for a few hours a day.
Build a therapy team
Many stroke survivors benefit from continued physical, occupational and speech therapy. A home health agency might be able to schedule home therapy visits. Some hospitals provide outpatient rehabilitation services, offering sessions two or three days each week. At the rehab center, I recommend scheduling speech first, followed by occupational and then physical therapy. Be sure to include rest, lunch and/or snack breaks between sessions.
Tip: Clinic and office-based therapists are available in some areas and can be a more affordable.
Enlist household helpers
The team should include help with grocery shopping, meal preparation, housecleaning, laundry, lawn care, and home and auto maintenance. These can be volunteers or hired cleaning or handyman services.
Tip: When neighbors or family go shopping, they can add a few items from the caregiver’s list.
A primary care physician is crucial for ongoing medical care, referrals to specialists, home care and therapy, and documentation for insurance. Other professionals include an accountant/financial planner for budget and tax planning and preparation, and a lawyer to draft a power of attorney and/or to negotiate medical insurance, disability and employer- related regulations.
Resources to Check out
Lotsa Helping Hands offers a free, interactive calendar system: www.nac.lotsahelpinghands.com
National Alliance for Caregiving: www.caregiving.org
The Well Spouse Association: www.wellspouse.org
The U.S. Administration on Aging: www.aoa.gov
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