Life with MS

When a Caregiver Has MS

By Gayle Lewis, Ph.D, MSCS
It is not uncommon for people with MS to also be caregivers. Like anyone else, they may be providing care for their parents, children, siblings, and/or their significant other. Caregiving is a stressful undertaking under the best of circumstances, but there can be substantially greater levels of stress to be dealt with when the caregiver is also struggling with the effects and uncertainty of MS.
The demands of dealing with your own health, compounded with supporting and caring for someone else, can certainly take their toll. This can have an effect on each partner in the care relationship, and on the relationship itself. So how do you balance taking care of your own needs and those of the person to whom you provide care?
Secure your mask first
Self-care is atop the list of things I recommend to anyone who is providing care for someone else, regardless of whether the person providing the care has MS or another health condition. I often remind people of the way flight attendants tell passengers about the oxygen masks on planes. Should there be a decrease in air pressure on a plane, a mask will drop down to you. You are instructed to put an oxygen mask on yourself first, before putting one on someone else in your care. If you cannot breathe, you cannot help anyone.
Similarly, it’s important to ‘take a breather’ as a caregiver, monitoring your own tiredness and taking breaks when needed. Make sure you schedule and keep your own doctor’s appointments, and get the right emotional support too. If you attend a support group for people with MS, you may want to attend a caregiver support group too, or accompany the person in your care to a support group for their condition. And, of course, do not forget about eating right, exercising, and getting enough sleep.
Ask for help

The second thing I recommend is honest assessment. You must realistically assess your own strengths and limitations to know what can and cannot reasonably be done to help yourself or your partner.
Sometimes, outside help is needed. This can mean swallowing your pride – not an easy thing for many to do. In fact, it can feel quite scary, which is why so many people forego asking for help at all. But when you don’t reach out, you leave yourself and your care partner isolated. You don’t reap the
advantages you might get if you just asked.
While challenging for many, it is important to openly communicate with your care partner. Share your honest self-assessments. This will allow you and your care partner to know what each of you can provide for the other, and what you can each provide for yourselves in terms of self-care. This open communication will help you identify areas of need, giving you a clear idea of when and where you need to seek outside assistance.
If one or both of you already regularly get outside assistance (as a result of having asked for help – bravo!) but find you need more help, have a frank conversation with the people who help you. Use this time to find out if they are willing to either take on a more prominent assistance role, so that you or your partner have more opportunities for self-care. Sometimes caregivers are already maxed-out and not able to take on more responsibility. If that’s the case, and you know you need help, keep looking for ways to get it.
Tap into your broader base of support – family and friends that you know you can turn to for help. One solution would be having a family/support team meeting – either in person or by conference call. This can be a valuable and effective way to make sure everyone on the care team is on the same page. If you find that not all your needs can be met this way, contacting an MS organization, such as MS Focus, to help with the coordination of care for you and/or your loved one can sometimes be the best direction to take.
The situation of both care partners having health issues can be overwhelming at times. It can also be an opportunity to find ways to work together, to recognize and acknowledge strengths, to better understand each other, to connect more fully with each other, and to experience gratitude for the help that is
available to you.
Dealing with Denial
I recently had an experience moderating a group of support partners of people diagnosed with MS. I asked if any of them felt angry about their partner’s MS. Without skipping a beat, one support partner began to shout, “What is there to be angry about? It’s a waste of time and energy to be angry!” He scoffed at the idea that some people do, in fact, feel anger at dealing with their partner’s MS – though he sure sounded angry in the way he rebuffed my question.
Unfortunately, amongst patients and their support partners, I’ve found that too few people are allowing themselves to recognize the effects that a serious health condition has on their lives. Many people do not want to face the seriousness of their or their partner’s disease, which leads to flat-out ignoring what it is doing to both the patient and their support partner. However, in refusing to acknowledge what is and what might be, they are missing out on learning the constructive ways that MS can be addressed.
Ignoring reality, even if you think it’s the best way to move forward, will only lead to more problems. Suppressing feelings is a surefire recipe for those feelings to emerge in unwanted, uncontrolled ways. If we take the time to pay attention and understand what MS, or another chronic illness, is doing to us and those around us, it can be dealt with in a more manageable and self-directed way.