- Should I Stay or Should I Go? Thinking About Assisted Living for MS
- Good Reasons to Choose Assisted Living
- Potential Downsides to Assisted Living Facilities
- Another Option: In-Home Support and Assistance
- How to Prepare for Needing Assistance
- Start Thinking and Talking About Assisted Living Now
Should I Stay or Should I Go? Thinking About Assisted Living for MS
What happens when individuals with multiple sclerosis (MS) can no longer take care of themselves and their homes? Do they attempt to continue living at home anyway? And if not, where do they go?
This question confronts most Americans if they live long enough, but it often happens to people with MS at an earlier age. Eventually, most people with multiple sclerosis need assistance to live at home, or they need to move to an assisted living facility.
Few of us like to think about such choices, but thinking and preparing in advance can reduce worry and lead to better outcomes.
“Most people would rather stay at home,” says Tony Chicotel, staff attorney with California Advocates for Nursing Home Reform. “But in many cases, there is what we call ‘self-neglect’ at home. People would rather suffer or have a low quality of life in their own home than get more services and better care in a new environment with a lot of strangers.”
Good Reasons to Choose Assisted Living
Increased personal safety is one reason to consider assisted living. If you’re falling a lot, have mobility problems that get in the way of self-care, or have cognitive problems that result in you forgetting to turn the stove off or getting lost, you probably need the level of help offered in an assisted living facility.
Social isolation is another reason. If you’re stuck at home and rarely have visitors, or you don’t have anything useful or interesting to do with your days, you might to do better in a residence where you’ll be with other people.
A third reason to consider assisted living is if daily chores, such as cooking or cleaning, or tasks such as dressing or bathing have become too difficult for you to do independently or as often as you need to.
Moving to an assisted living facility solves a lot of these issues, while still allowing you a measure of privacy and independence, although how much depends on the facility and the level of care you need — and whether it feels like enough depends on the individual.
Barbara, 70, a Buffalo, New York, resident with MS says of her move to senior housing, “I’m so glad I moved. No stairs, no maintenance worries, and activities they provide — things you wouldn’t have if you were sitting home.”
If you’re considering assisted living, research what’s available in the geographic area you want to live, then call or send for information from each residence. Plan on visiting strong contenders, and visit more than once, advises Chicotel, including “once on a weekend or evening.”
Make a list of the reasons you’re considering assisted living, and use it as a checklist to help you evaluate potential residences when you visit and meet the staff. Observe some interactions between staff members and residents, and talk with some residents or their families yourself. See if there’s anyone you can imagine spending time with.
Potential Downsides to Assisted Living Facilities
Assisted living isn’t for everyone. For one thing, it’s expensive. Depending on where you live, prices might range from nearly $2,000 a month for basic room and board, with minimal care and no programs, up to $7,000 a month or more for significant levels of care, with activities and outings.
People with MS tend to be far younger than other residents of assisted living, which can make it hard to find friends or even to agree on what to watch on TV in the social area.
Some facilities may not be set up for electric wheelchairs, and staff may not know how to handle your mobility or computer equipment.
If you’re enrolled in a meal plan at an assisted living facility, it can be hard to get used to having other people decide what and when you’ll eat.
Leaving home can mean leaving your community, your friends, your church, and the things you liked to do there. The psychological adjustment to assisted living can be difficult, and some people become depressed after making the move.
If any of these sound like significant barriers for you, and your current home is livable for you, you may want to research getting more in-home assistance.
Another Option: In-Home Support and Assistance
Families are usually the first line of help, so you’ll want to stay on good terms with your family so they feel good about helping you. Learning to communicate and negotiate are crucial to maintaining good relationships with those who are assisting you. You might also benefit from counseling to become more comfortable with being helped.
You can also pay for help with cooking, cleaning, laundry, shopping, yard work, and even personal care. Make a detailed list of your needs, then ask around for referrals. The website Paying for Senior Care, created and maintained by the American Elder Care Research Organization, can also help to locate sources of help and the means to pay for them.
If you qualify for Medicaid, you may be eligible for in-home assistance through your state’s Medicaid program. These programs allow you to hire your own family or friends as caregivers, and they also maintain registries of qualified caregivers for people who need them. You can find out more about each state’s program on the Benefits.gov website.
A wide variety of government and nonprofit organizations provide services for elderly and disabled people, such as delivering meals, taking people on outings, and even providing respite care for caregivers. To find services, visit the website of your community’s Caregiver Resource Center, which you can find with a Google search.
Most cities also have adult day programs that provide socialization and lunch and may provide transportation, some health services, exercise programs, and sometimes legal services. Rural areas may have far fewer services available. Again, though, most participants will be much older than the average person with MS seeking such a program.
Some MS centers have wellness programs that offer group classes, exercise programs, social groups, and outings specifically for people with MS, as do some chapters of the National Multiple Sclerosis Society (NMSS). The NMSS Find Your Wellness Program search tool may help you locate programs in your area.
How to Prepare for Needing Assistance
“You don’t have to start thinking about this stuff when you’re diagnosed,” says Chicotel, “but you don’t want to wait too long.” Whether you like the idea of assisted living, or you just need a more accessible place or more help, it’s wise to start looking before you need it. By the time you need it, it may be too late to do a proper search.
Chicotel says the first thing to ask yourself is, “How important is it to stay in my home?” People who are used to trying new things and moving a lot may be more likely to accept moving to an assisted living facility than someone who has lived in the same house for 40 years and doesn’t like meeting new people.
You also need to do financial preparation. “If I’m diagnosed with MS,” says Chicotel, “I want to be thinking about a financial appraisal and a caregiver appraisal. Who among my family or friends would be willing and able to help? What can I afford? I’ve got so many years to make my money last.”
Preparation for staying put and moving out are two different things. To stay in your home, you may need to make your place more accessible. You might need grab bars, hand rails, wheelchair ramps, an accessible kitchen, or a walk-in shower. For assistance planning and paying for such modifications, check out the resources listed on Eldercare.gov. The NMSS and the Multiple Sclerosis Association of America may also be able to provide financial assistance for home modifications.
If you choose to stay home, you will also need to plan for who can help you and what each helper can do. If you spend a lot of time alone, you might want a medical alarm device you can wear at all times in case of falls.
Start Thinking and Talking About Assisted Living Now
The answer to the question, “Should I stay or should I go?” will be different for each person. A lot depends on your income and savings, your age, your family, and your wishes. It’s not too early to start thinking about it and talking with your loved ones, because your decision for the future will affect how you live now.