Caregiving Support

1. Learn as much about your loved one's medical condition and physical needs as you can. Family  caregivers are an integral part of the health care team. If you have questions and concerns about  medical issues, medications, or a change in your loved one's symptoms, please contact his or her  physician or a member of the home health or hospice team. Knowing more about details of health can help you help them better and more efficiently.  

2. Prepare the home environment for safety and comfort. Make sure you know where the emergency  numbers are, and where the fire extinguishers are located. Make an escape plan. Have enough  emergency supplies, medication, oxygen, and water on hand for 72 hours. Write down the oxygen supplier number and ask to have a back up for your plug-in oxygen concentrator.  Also it's a good idea to have some travel oxygen tanks.  

3. Consult with members of the health care team on special products that might improve safety and  function, such as walkers, canes, wheelchairs, a raised toilet seat, grab bars, handrails, night light,  hospital bed, over-bed table for eating, etc. An occupational therapist is excellent at this kind of consulting. They can come to your home and review what equipment you have, see if your bathroom and shower safety can be improved, check if the recliner and couch are far enough up to ease safe transfers, and more. Ask your MD for a referral to home occupational therapy.  

4. Use correct procedures to make care safer, easier, and more comfortable. If you’re caring for a loved one at home, be  sure to learn and use proper lifting and moving techniques in order to protect your back from injury. Ask  your health care team for information about 'body mechanics.'  Ask your MD for a referral to home physical therapy and for home health or hospice, including a nurse and home health aide if you qualify.  Not only can the therapist assist your loved one in safe mobility, they can help teach you how to transfer safely, and turn him or her in bed.  A home health aid can help with bathing and can help you learn to help your loved one turn from side to side in case you need to change sheets when someone is in the bed. A nurse, too can help with teaching on comfort-in-bed positioning.  

5. Caregiving is a major change in your life. Don't be afraid to acknowledge how tough it can be  to be a primary caregiver for a loved one. Know that you're doing your best. And try to get the help you need. Please refer to Say Yes to Help and other articles in the caregiving section of this website.  

6. Re-learn to manage stress in the context of intensive caregiving. Take time each day for 'mini-breaks,' even in home if you can't go out. If you have or can arrange help, or when a home health aid is giving your loved one a shower, go out for coffee or for a walk or the grocery store. Call a friend to check in. Exercise. (Even a short walk is helpful.) Try to get enough sleep so that you feel rested. Eat healthily, insofar as that is possible.  These can sound like trite-sounding words, and can be overwhelming without proper help. Try and ascertain what ways you have been resilient in tough times before.

7. Ask your employer if you are covered under the federal law, "The Family and Medical Leave Act"  (FMLA). If so, you may be able to take up to 12 weeks of unpaid leave per year, to care for a seriously ill  spouse, child, or parent. If you have home health or hospice, the nurse or social worker can help with  the paperwork. Your MD will often need to sign these requests: they or their staff members may be able to help you also.  

 8. Obtaining help from a distance can be a challenge. If you are caring for a loved one from a different  state or area, the resources listed below may be helpful. Call or check on-line to see what supportive  long-distance caregiving resources are available. Consider calling a hospice or home care agency for a  consult visit. Ask your loved ones physician’s office to help identify local resources like Wheels on Meals,  Volunteer Chore Ministries, supportive faith communities and community organizations. See Helpful  Resources for Caregiving and begin to craft a “care quilt” of paid and unpaid help. If your loved one is  in an assisted living facility or a nursing home, ask for help from staff. They have local resources too.  

9. Put together a care plan. If possible, work with your ill loved one to establish goals and priorities for  care. If possible, work with a home health or hospice nurse or social worker.  What is important to him or her? Try to integrate events and activities you both enjoy into the  weeks schedule. Prepare information and questions for medical appointments. Ask health care  professionals for their feedback in creating/modifying the plan. Prepare a medication list of meds, times,  doses, and reasons for each medication. Purchase a med-e-set to organize daily and weekly meds. Use the discharge summary med form from your loved one's most recent MD visit.  Set med reminder alarms on your phone.  

10. Say 'yes' to offers of help. Allow friends and family to help out when they can. Check with your  doctor or insurance company about what kinds of professional home health or hospice help might be  available on a paid basis. Medicare, for example pays for home health (for a limited time) for persons  needing therapy or nursing and for a home hospice team, including a home health aide to help with  bathing, for anyone who has a limited life-expectancy of 6 months or less