Support for Caregivers
Caring for someone with multiple sclerosis can be as deeply satisfying as it is emotionally and physically exhausting. This is especially true for the person who is the primary caregiver of a person with multiple sclerosis.
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, as partners in MS, the relationship will require work from both of you in order to succeed.
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 may become 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 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.
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, it is critical that you seek professional help if there is the potential for abuse.
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. Sexual intimacy does not have to disappear though.
Open and honest communication about sexual needs and pleasures without fear of embarrassment is the first step toward rekindling intimacy. Partners of people with multiple sclerosis can begin by discussing what a rewarding sexual relationship is for them.
You should consult your healthcare professional with any questions relating to sexual 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 alleviate 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 your own hobbies and interests. 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 an MS caregiver support group They can offer an outlet for your emotions and provide practical information and support.
