Develop an understanding of MS and embrace being part of the MS community.,
Evaluate and organize your financial situation in regards to the medical expenses associated with MS treatment.,
Document the care needs of your loved one.,
Coordinate respite care.Respite care programs provide a break for the caregiver.
As a MS caregiver, you will need to educate yourself about the different aspects of the disease, as well as the specific diagnosis of your loved one.
Do some additional research at your local library or on the Internet about MS. The website of the National Multiple Sclerosis Society provides extensive materials on MS and related topics for people with MS, family members, and health care professionals.
Be honest with your medical professionals about the limits of your understanding of a difficult diagnosis or treatment option.
If your provider does not have the time or skill to communicate in detail with you about your concerns, ask if support staff (i.e. a nurse or medical social worker) is available to you.
Reach out to family and friends who have a medical background, discuss your knowledge gaps, and enlist their support for office visits when necessary.
Connect with a support group by getting involved with your local National Multiple Sclerosis Society.
Go onto the National Multiple Sclerosis Website under “Resources and Support” to register for an online or in person support group in your area.
Research other national organizations that are available to help caregivers lead more balanced lives.
The National Family Caregivers Association hosts an online forum where you can connect with other caregivers if you feel depressed, want to share a piece of advice, or feel isolated and want to talk with others who might be experiencing the same thing.
The Family Caregiver Alliance provides state-by-state resources for caregivers, including respite providers.
Work with your MS medical team. Although talking about MS and financial help doesn’t come easily, if you let your doctor know that you have a tight budget, he or she can help you find more affordable treatment strategies and advise you on the best ways to get any needed assistive devices, such as canes, walkers, or wheelchairs.
Reach out to pharmaceutical companies. MS medications may be expensive, but drug companies often have programs for qualifying families that provide prescription drugs at lower cost. Look at the drug company websites or ask your doctor or clinic for help to connect with the local pharmaceutical sales representative.
Take advantage of available programs such as Medicare, Medicaid, disability payments, Veterans Administration benefits, and other programs that can help offset some costs.
Taking a proactive role in budgeting can help you and your family feel more in control. Because MS reduces a family’s overall ability to earn and save for retirement, try to make retirement savings and savings for long-term care a priority, if and when possible.
, Develop a notebook of written information pertinent to your loved one’s care and have it readily available for anyone who is providing care in your absence.
You first want to make sure your notes include the following up-to-date information:
Doctors’ names and phone numbers
Preferred hospital or ambulance
Phone numbers of close family and friends/ who might stop by to visit
Information re: medications and other aspects of care
Medical alert equipment
You will also want to include information on the following things as well:
Where to find personal supplies such as eyeglasses, dentures, hearing aids, lift
Daily and weekly routines
Things that might agitate or could calm your loved one
Location of household and emergency supplies
Organize this information in a way that is most useful to you and easily legible for others who may use it.
, For those providing intense, daily care to a loved one, respite means being relieved of those daily caregiving responsibilities for a time to relax and re-energize.
Many caregivers can create their own respite care by coordinating with friends and family members who are willing and able to visit for a few hours, days, or weeks. However, respite care may also include the paid assistance of home care workers or companions who come into the home to help with your loved one.
You can also coordinate out-of-home respite car which involves intermittent, planned short stays of your loved one in adult foster care homes, nursing homes or hospitals.
These professional services can be purchased privately or provided through community or state-financed programs. Check to see what your health insurance benefits provide.