What Caregivers and Partners of People With MS Can Do
Most people with multiple sclerosis (MS) don’t become so severely disabled
that they require full-time long-term care. But MS is unpredictable, and each
person’s experience with MS is different.
Regardless of what kind of care a person with MS needs, it’s important to
remember that you, the caregiver and he or she are in this together. Whether or
not you were partners in life before, you are now partners in multiple
sclerosis. And in order to succeed, the relationship will require work by both
partners.
Multiple sclerosis care comes in different forms
Making practical decisions
When you have multiple sclerosis, financial planning and life planning are
essential for continued financial stability and should be started early. This
will require research into a broad range of topics including income tax issues,
asset protection, medical insurance, employment rights, and state assistance.
Since each person’s situation is unique and laws vary from state to state, it
may be necessary to seek professional advice and assistance.
Deciding the level of care
Ask your medical team to assess what multiple sclerosis treatments and
changes are necessary to provide optimal care. Some people will just need
self-training for administering multiple sclerosis treatment and coping with
multiple sclerosis symptoms. Others will need at-home care. And for others, a
nursing home or assisted-living facility is the best option.
Most of all, it’s important to be realistic about the needs of the person
with MS, and whether you can commit to them in terms of kind of care, time,
and/or financial responsibility. Don’t let rational decision making get
side-tracked by guilt, grief, anger, or shame.
Caring for a person with multiple sclerosis at home
Taking care of a person with MS at home may require some changes, or even
renovations, to increase safety, accessibility, and comfort. But sometimes the
best choice is moving to a house or apartment with a more accessible layout and
a more accessible location.
Your home isn’t the only thing that may need to change. Your household roles
may need to change as well. Caregivers can and should make appointments with
healthcare professionals to get information, advice, and training in
administering therapy, if appropriate, and symptom management.
As a caregiver, you'll need to take and then give back responsibility for
household tasks all the time. Plan to re-evaluate task assignments as needs and
circumstances change. And remember, if a task seems impossibly difficult, your
medical team can probably recommend an easier way to do it.
Sometimes children will have to assume responsibility for major household
tasks if a parent has multiple sclerosis. However, children should not be
responsible for a parent’s medical needs or daily functions. In addition, older
teens and young adults should not be expected to be responsible for long-term
primary care of a parent with multiple sclerosis.
On the other hand, family members and friends of someone who has multiple
sclerosis can be crucial in creating an extended network of care. The first
step is to tell them that their help is welcomed and needed. Keep a list of
projects and errands friends and family can do, making sure they are specific,
time-limited tasks.
Depending on the situation, further help may be needed. If professional
home-care help is required, make sure that the person with multiple sclerosis
is part of the interview process.
Direction on delicate issues
Avoiding abuse
Anger is a common emotion for caregivers. The situation feels and often is
unfair. It’s crucial for anger and frustration to be dealt with and healthy
outlets developed before angry encounters become physically and emotionally
abusive. Because abusive behavior is never acceptable.
But tensions can mount in even the most loving families. If tensions are
mounting, you need to call for a time-out, and call in professional help.
Nurturing intimacy
At some point, caregivers who are also spouses or partners will usually face
changes in their sexual relationship. MS can inhibit both sex drive and
function. MS fatigue can impede sexual activity. Most of the MS symptoms that
interfere with a healthy sexual relationship can be managed, so it’s a good
idea to get help from a healthcare professional.
Changes in your roles can also affect your sexual relationship. Caregivers
sometimes begin to feel that they are performing a parental role, rather than
acting as a lover or spouse. Sexuality does not have to disappear though.
Partners of a person with multiple sclerosis can begin by discussing what a
rewarding sexual relationship is for them. Open and honest communication about
sexual needs and pleasures without fear of embarrassment is the first step
toward rekindling intimacy.
Care for the caregiver
Providing emotional support and physical care for someone with multiple
sclerosis can be deeply rewarding, but it can also become overwhelming. The
strain of balancing care with other responsibilities can lead to feelings of
martyrdom, anger, and guilt. One of the biggest mistake caregivers make is
thinking they can handle everything alone.
There are several things you can do to avoid burn-out.
- Reach out for practical and emotional support. Sharing your stress can help
relieve it
- Don’t ignore your own health. You need a healthy diet, regular exercise,
and uninterrupted sleep just as much as the person you are caring for
- Don’t give up enjoyable outside activities. Research shows that the
emotional stress of caring is related to how "trapped" by their
situation caregivers feel
- Keep the lines of communication open. Many emotional stresses are the
result of poor communication. You should be able to discuss your fears and
concerns openly
- Join a support
group. They can offer an outlet for your emotions and provide practical
information
Source: Some tips and facts on this page are based on information
from the National Multiple Sclerosis Society. Their comments are based on
professional advice, published experience, and expert opinion, but do not
represent individual therapeutic recommendations or prescription. For specific
information and advice, consult your personal physician.
