Communication and Support

I had an interesting conversation today with someone during my physical therapy. The topic was caregiver stress and how that stress effects the relationship between the MS patient and their loved one. Especially if the caregiver is the husband/wife/significant other of the patient. As the "patient" I often forget how MS directly impacts my "caregiver", my husband Mark. On a daily basis, between exacerbation's, life goes on for us as "normal". It's DURING and immediately following an exacerbation that the caregiver needs extra support as well. After all, I become (for obvious reasons) pretty caught up with how it's directly impacting MY life and in all honesty, tend not to seriously think about how it impacts Mark. Sure, I can tell when his stress level is too high (what wife can't?!), but as far as really being sensitive to how he is coping with things during the actual exacerbation, it doesn't happen. That being said, it's not in my "wiring" to be a whiner or a complainer. In fact, I tend to isolate myself. So, at least Mark is spared that. If anything I think his frustration during an exacerbation is based primarily on the fact that he can't stop or prevent it. Nor can he take away the side effects of treatment. I will however be honest when I say that when Mark IS frustrated with ME, it's generally because I'm being stubborn and pushing myself too hard. (That goes back to the not wanting to be a burden). The key on both sides is communication. (Sadly, not a strong point in a lot of relationships. Add a challenge to the relationship and this becomes VERY apparent). Mark and I do A LOT of talking. It's not always easy. Sometimes the MS makes it hard for me to find the right words. (Try telling someone how your feeling about something and your brain won't give you the word). Sometimes it's my frustration and anger over the disease that makes it hard to open up. I can't answer for Mark, I won't even try, but I'm sure that there are times when trying to get what he's feeling or thinking across to me isn't easy for him either. I can't imagine what it would feel like to watch someone I love go through this, and not being able to "fix" it. I imagine I'd experience every emotion out there. Anger, sadness, grief, frustration, depression, every one of them. I would imagine there would also be times where the feeling of being overwhelmed would be pretty powerful. In other words, every emotion I feel as an MS patient, I'm sure my husband feels as a caregiver. So, how do we deal with it? How do we prevent stress issues, both caregiver stress, MS stress and day to day living stress for becoming a problem? It's not easy. It's one day, one exacerbation at a time. It's CONSTANT communication. We TALK. We devote an hour each day, every day to communication. No TV, No phone, No distractions. As Mark travels on business every week we have that hour by phone EVERY night he's gone. The same time every night. No exceptions. Is every night's conversation "heavy" NO. That's not the point of the hour (which often becomes 2-3 hours even on the phone). The point of the hour is that it's OUR time. Face to face (or ear to ear) uninterrupted attention given to each other. Our time to "reconnect' after the hustle and bustle of our days. Our time to focus on the most important person in our lives, each other. We know that if we do this, communication flows freely and it's much easier to talk about any POTENTIAL issue before it BECOMES an issue. Another thing I can't recommend enough. The caregiver and patient need outside support. When you are faced with a life altering disease attending a support group ought to be a requirement! Both for the patient AND the caregiver. No one understands what Mark goes through better than another caregiver. No one can support him, encourage him or point out another way of thinking in dealing with a loved one with MS better than another caregiver. Same for MS patients. As a fellow MSer you've heard the fears whispering in your ear. You know what they sound like and what they say. No one can tell an MSer to stop feeling sorry for themselves and get away with it like another Mser! (We ALL need to be told that now and then. It's OK to allow yourself an infrequent "pity party now and then, but then you need to snap out of it. Pull yourself up by the boot straps and move forward). So, my suggestions: Work on communication and get active with your local MS support group! BOTH patient and caregiver!