Most people receiving care have the help of family members – either to directly provide the care or to help with locating and funding professional care. But what if you don’t have a family? Or what if family members are unable, or unwilling, to help?
For a person with MS who is on their own, the prospect of future care needs may seem daunting. But there are several things you can do to prepare, and ensure that help is available if that time comes.
Prepare early
No one really wants to think about the possibility of needing long-term care when they are still relatively young and healthy. However, that is the best time to prepare. Early on, you might have some options – such as purchasing long-term care insurance, or starting a retirement fund through your employer – that may become more difficult to accomplish as your disease progresses.
Even if your condition has started to advance, there are still steps you can take. Find out what options are likely to be available to you in the future, given your financial circumstances. Will you be able to pay for the care you may need, or will you need to apply for programs like Medicaid? Are there state or local programs that provide funding for long-term care? And what type of care would you prefer? A wide variety of care options exist, including in-home help, assisted living, and skilled-care facilities. The right choice for you will depend on your needs at the time, but knowing what options are available, the costs, and what financial assistance is available will help you to plan ahead. Your local Center for Independent Living is a good place to start. (See www.virtualcil.net to find a center in your area.) Or contact your local Area Agency on Aging (
www.n4a.org).
Transition slowly
For a person who has family available to help, the transition to care happens slowly. Perhaps at first, a member of the household just picks up additional slack when the person is not feeling well. Later, household members may take on additional chores, or a family member may come over weekly to help with tough cleaning jobs or mowing the lawn. Over time, family members take over more and more responsibilities formerly done by the person in need of care.
When you are on your own, you may feel you need to “hold out” as long as possible before seeking help. You may picture yourself going from managing on your own, to needing to move out of your home into some form of assisted living. But the earlier you seek appropriate levels of assistance, the longer you will likely be able stay in your home.
Seeking assistance does not necessarily mean professional help. As chores and tasks begin to become difficult, ask friends, neighbors, or members of your faith community for help. For example:
• If walking in from the grocery store parking lot leaves you with too little energy to do your shopping, could a neighbor take you along and drop you at the door when they go to shop for themselves?
• Would a friend be willing to help fold your laundry while you watched a movie together?
• Is there a teen in your church’s youth group who would be willing to weed your lawn for a small fee?
While it may feel awkward to ask, many people are happy to help. Doing so can also bring you closer to friends, neighbors, and others in your community.
Or you can find helpers for hire from sites like takl.com or Amazon Home Services. You can locate people, all of whom have undergone background checks, to do tasks like cleaning your house, mowing your lawn, organizing your garage, or making minor repairs. The jobs are pre-priced and both sites offer satisfaction guarantees.
You can also look for ways to maintain your independence longer. If you are having problems with routine activities – such as grooming, household chores, or driving – your doctor can refer you to an occupational therapist. These specialists can help you rehabilitate the skills you have lost, find new ways to accomplish tasks, or introduce you to helpful tools that can make daily activities easier.
Choose wisely
When the time comes that you do need assistance with your care, carefully consider what type of care and what providers you will use.
• If you have private long-term care insurance or Medicaid, review your benefits and see which services are covered and under what conditions.
• Know your rights and responsibilities as a person who is a recipient of professional care. Insurers and providers will generally give you this information upon request.
• If you have a choice of homecare agencies or aides, check references.
• When selecting a residential facility, read reviews, check with state agencies for complaints, and tour the facility yourself, if possible.
Those without family support are more vulnerable to potential abuse in long-term care situations. This is especially the case if you are experiencing cognitive or communication impairment because of your MS. Discuss these issues with trusted friends or a designated advocate. Have a plan in place to evaluate your well-being and the quality of your care.
Finally, don’t allow yourself to become isolated. Though you may have reached the point where you spend most of your time at home or in a care facility, you still have the ability to reach out:
• Invite a friend over to play a game of cards.
• Call a neighbor to ask how they are doing.
• Join an online support group.
• Write cards and letters to soldiers overseas.
• Get to know your caregivers and offer them some friendly conversation. Just because you may need greater care doesn’t mean you don’t have care to offer in return.
To learn more about the factors involved in preparing for, paying for, and using long-term care, visit longtermcare.gov.