While caregiving is often a journey of partnership and devotion, it’s simultaneously a rollercoaster, filled with surprise ups and downs and twists and turns. This rollercoaster analogy is especially true when caring for someone with as complex and unpredictable a disease as multiple sclerosis. But the good news is that with the right frame of mind, a good support network, and healthy lifestyle habits, the physical and emotional highs and lows of caregiving can be managed (even embraced) well.
Care for Yourself
The precise physical needs of caring for a loved one with MS will vary, but may include activities like bathing, dressing, lifting, feeding, assisting with home therapy exercises, driving, and completing household tasks.
Other activities may be less physically taxing, but require mental stamina like:
- Calling insurance companies
- Scheduling doctor and therapy appointments
- Picking up and administering medications
- Managing finances
With that, in order to combat the daily toll of caregiving and prevent burnout, it’s important to care for your own body and mind. This means ensuring you are up-to-date on your own doctor visits, as well as your cancer screenings and vaccinations.
Stay active, sleep well, and eat nutritiously, so you feel well and have the energy to perform your sometimes arduous caregiving tasks.
Lastly, be attuned to your mental health by taking breaks throughout the day to engage in relaxing, enjoyable activities. Try reading a chapter of a book, calling a friend on the phone, or going for a walk while a friend or another caregiver takes care of your loved one.
Isolation is a common problem for caregivers and may create additional stress, as well as that dreaded “cabin fever” feeling. To avoid this dilemma, consider joining a caregiver support group or reaching out to a friend or neighbor. It’s incredible what ten minutes of laughter, good storytelling, and distraction can do for your soul.
Along with isolation, be cognizant of symptoms of depression like a change in your appetite, sleep problems, and a loss of pleasure in endeavors you once enjoyed.
Of course, be sure to talk with your doctor if you are experiencing any symptoms of depression, as there are effective ways to manage your mood.
Get to Know Your Loved One’s MS
Developing a basic understanding of MS is essential to caring for your loved one, especially when it comes to grasping their specific symptoms, worries, and frustrations.
For instance, even though the person you are caring for may be quite functional physically, he or she may frown upon attending social gatherings because of MS-related speech problems or because of thinking and memory problems. In this case, it’s important to respect their concern, provide empathy (for example, saying, “I’m sorry you are worried about speaking in front of your friends.”) and together work on a way to navigate this struggle.
Another example is if a person with MS uses a wheelchair or other mobility assistive device, he or she may get frustrated (understandably) by accessibility accommodations. This is a clue to you as the caregiver to call ahead and/or have a backup plan when going outside the home.
Likewise, the person you are caring for may prefer that he speaks with his doctor alone or that you communicate with family members about major health changes or decisions. Try to respect these wishes, even if you do not fully understand or agree with them.
Know Your Limitations
It’s important to be candid with yourself about what your abilities and comforts are in terms of providing care for your loved one. If bathing and dressing your loved one every morning is too physically draining, consider asking another family member to help with that task. Alternatively, you could hire a home care nurse or aid to help you for a couple hours every morning.
Remember, at some point, a person with MS may need more extensive care than his or her caregiver can provide. This is not a failure on your part, but rather a function of the disease.
Adopt a Calm Attitude
In MS, symptoms often ebb and flow unpredictably from one day to the next. By adopting a “go with the flow” attitude, you can help your loved one with MS feel calm (and you too). That said, maintaining the face of resiliency in front of your loved one is no easy feat. Be sure you have someone you can be vulnerable with and express your feelings to, whether that’s a friend, partner, family member, or therapist.
Everyone needs a break from caregiving, regardless of whether you are caring for a family member or whether you are being paid to provide care. In addition to small daily breaks, it’s important to take longer breaks, like a vacation or even a night away.
One option is respite care—you may consider talking with your local chapter of the National MS Society for further resources on their Respite Care Program.
Caregiving is a special role, and while it may be physically and emotionally exhausting at times, it can also be quite satisfying, especially with the right tools and support. In the end, remain kind to yourself by taking care of your needs and refreshing your mind and soul each day.
Lastly, remember, your presence and your care is enough. No one expects you to be perfect or perform miracles. So rest assured that your hand holding, your hug, your chit-chat, your sense of humor, your hard work, and your listening ear mean the world to your loved one.
If you know a loved one who could benefit from attending an adult day program click here.