Illness, including ALS, can attack without warning and can happen to anyone. No two people with ALS are living in the same situation and no two ALS illness courses will exact the same toll. But all couples, where one partner is placed in the dual roles of loving partner and personal care provider, will experience the greatest test on a marriage and that of their commitment to it. It is essential that couples continue to function as partners, and not become only patient and caregiver.
With the physical changes brought on by ALS, comes a shift in the balance of power that is naturally created in all relationships. As one partner becomes less physically able; the other becomes more physically active to make sure that the household functions, the kids are raised and/or cared for, and provide physical care and emotional support for their loved one. Without paying attention to our emotions, resentment can easily crop into our lives.
How To Preserve The Relationship?
- Maintain equality within the relationship and find ways for both partners to make significant and meaningful contributions. Take advantage of the resources available to you. The power of technology can allow a person with very little controlled muscle movement to become an active member of the family and its day to day operations.
- Keep communication open through family meetings and make decisions as a team. Remember, to try and end the ALS journey as you started it, a team fighting together.
- Focus on your Relationship: Research indicates that the better you feel about your relationship with the person receiving care, the less stress you will have. Talk with him or her. Get counseling. If there is serious conflict, invite a third person–one you both know and trust–to help mediate. The results can be gratifying: spouses with the highest morale generally attribute it to the continuing companionship and good relationship they have with their partners, which can also help sex lives to stay healthy.
- Get help! Take advantage of resources available – especially respite care. This allows caregivers to get away from relentless and potentially overwhelming responsibilities for an hour, a day or several weeks by having skilled care personnel stay in the home, or by having their partner stay in a facility which provides an appropriate level of care. Most caregivers report that providing personal care for their spouse takes away from the sexual intimacy needed to maintain strong bonds of marriage.
- Stay Independent and Avoid Isolation: Keep in touch with friends, have people over/visit them, going out independently will help decrease isolation and foster independence. Not many married couples, independent of ALS, spend 24 hours together and do all activities together
- Pay attention to each other’s health, both physical and emotional. Honor each other’s need to manage stress, relieve frustration and grieve by taking enough time for themselves.
- Manage Stress – Stress can cause physical and emotional exhaustion. Its symptoms include diminishing self-esteem, a negative attitude, a loss of concern for others, a loss of focus on your own life. If let unattended for caregiver’s, it can lead to burnout – It’s real and It happens!
- Get Your Finances in Order: Regardless of how little or how much you have, get some help sorting through insurance policies, retirement programs, social security and other government entitlements to find out what there really is to draw on. Keep in mind that specific benefits and programs change from year to year, so re-check periodically. This will help to minimize endless worry about financial strain.
- Accept Help: Don’t try to manage ALS all alone. Taking advantage of the offers of help that come from family and friends, can make time to be set aside as couple time. It is important to continue dating activities, or those activities celebrating your love for each other that were in place prior to ALS.
You may not be able to do anything about ALS being in your life, but you control how it impacts your time, energy, attitude and quality of life. Finding ways to acknowledge and nurture your personal life will bring new energy and enthusiasm into your life as a partner, patient, friend or caregiver. Even the strongest individuals, and marriages may need extra concern and help along the path of ALS.
For more information and resources on caregiving, please visit http://www.alsa-stl.org.