BOTTOM LINE by Julie StachowiakEven if we are not bedridden and totally dependent, things are usually different than they used to be when it comes to the relationships with our caregivers. Where does that leave us?
If you have MS (or any other disease which requires care), there are some things you can do to help take care of the people that care for you:
- Give Them a Pass: Encourage them to take breaks and enjoy something they like, even if it means that you can’t come along.
- Spread the Responsibility Around: Ask other people for help besides your spouse or the person who always helps you. Someone (I don’t remember who) once said: “If you want someone to be your friend, ask them for help.” Many people love to be asked for assistance and would love to do something for you -- they just need you to make a specific request.
- Get Your Doc to Help: Mention problems to your neurologist and ask for suggestions. Perhaps an occupational therapist could come to your house and help make modifications that would help you be less reliant on your caregiver.
- Keep Them Informed: Share all information about MS and specific symptoms that you are having with your caregiver. Send them to this website, for example. Show them articles that describe what you are feeling or what you are worried about.
- Have Frank Discussions: Try to present the situation as a team effort. I found MS and Your Feelings, by Alison Shadday, helpful in guiding such discussions and helping caregivers see that they are not alone (there is a section in there specifically for caregivers of people with MS). This book also has wonderful stress-reducing suggestions that may be useful for both you and your caregiver.
- Plan for a Relapse or Symptom Worsening: By making a list of all your responsibilities, organizing all of the tasks, deciding who can be responsible for them and enlisting help before you need this type of assistance, you can eliminate a great deal of stress for yourself and your primary caregiver. This will allow both of you to focus on getting you through treatment, helping you to heal and giving both of you space to adapt to any new situation.
Last wordsCaregiving can be particularly stressful for couples. One person being put in the position of caring for the other (even if this just means giving a little help some of the time) can change any relationship. MS can transform things from a partnership between lovers to more of a parent-child situation, stripping people of dignity and introducing embarrassment and dependence, even though that is not intended. By being aware of this, you can both do your part to prevent it.
Marriage and Multiple Sclerosis