Being a caregiver to someone who has been newly diagnosed with multiple sclerosis (MS) isn’t easy. As you and your loved one are reeling from the news, you also may be thinking: How do I handle all of this?
There’s no denying that life with MS comes with a learning curve. Early on, caregivers will often ask me how to navigate their new normal. There’s no one right answer, of course. But I always try to share some advice that I think will be helpful. Here are some of the things I tell them.
Give yourself time to make sense of the news
Both you and your loved one may be struggling to accept their new MS diagnosis — and figuring out how to move forward. Feelings of shock, anger, grief, loss, depression, denial, and even relief that you finally have an answer are all normal. You may also be wondering how the diagnosis may change your roles and your relationship.
Everyone has their own coping strategies. Often, I’ll encourage caregivers and patients to have open, honest conversations about how each of them is feeling. Sometimes sharing what’s on your mind can serve as a reminder that you’re both in this together. And that in itself can be comforting.
It can be helpful for you and your loved one to try to adopt a problem-solving mindset. Yes, the challenges posed by MS may always be difficult. But believing that you can work through them can help strengthen your resolve. Over time, you’ll come to feel confident that you can tackle any hardship that comes your way.
Get to know the diagnosis
The more you know about your loved one’s MS, the better equipped you’ll be to deal with it. When you’re clear on your loved one’s needs and limitations — and how they may change — it’ll be easier to find the right support. The members of your loved one’s healthcare team are a good place to start. They can help you understand:
- The type of MS your loved one has
- What to expect during flare-ups
- How the disease typically progresses
- How you, your loved one, and your family will be affected over time
Take practical action
While you and your loved one are processing the diagnosis, you’re likely also thinking about logistical steps you may need to tackle. That can include things like:
- Confirming whether your loved one needs additional experts on their care team and how to access those experts. They may need a social worker, physical therapist, occupational therapist, or registered dietitian, for example.
- Making your living space safer and more accessible for your loved one. An occupational therapist may be able to help you pinpoint possible tripping hazards. They can also suggest ways to modify areas of concern, like the bathroom or kitchen.
- Securing disability benefits, if your loved one will no longer be able to work.
- Making sure legal and financial documents for both you and your loved one are updated as needed.
Find new ways to be together
Becoming a caregiver can change your relationship with your loved one. Together, you can think about ways that the two of you can continue to feel connected. You could commit to taking daily walks outdoors or cooking healthy meals together, for instance. These sorts of healthy lifestyle activities can support your loved one’s medical treatment plan. And they’ll help you both feel good.
Take care of yourself
Honoring your own needs helps you be a better caregiver and prevent burnout. It’s important to take time for yourself to exercise, get enough sleep, and explore hobbies or spend time with friends. You might also think about finding a caregiver support group. The National Multiple Sclerosis Society is a good place to start.
Consider asking family and friends to step in to give you a break or hiring a professional to help at home. Even if you can only get away for a few hours a week, it’s worth it.
And if you find yourself becoming overwhelmed, reach out to a mental health professional. Together, you can find ways to cope with your emotions and make your load as a caregiver more manageable.
Get comprehensive MS care
Temple’s Multiple Sclerosis Program offers comprehensive treatment and support that’s focused on a person’s total health. To learn more, call 800-TEMPLE-MED (800-836-7536) or request an appointment online.
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