Giving care to others
One of the many realities that we must deal with as individuals with a chronic disease like RA is the notion of being a caregiver. It may sound strange but the fact is that most of us will be caregivers during our "tenure" with RA. How can we accomplish this in the face of a disease that by its very chaotic nature makes caring for others a challenge at best?
Understand that I am not only speaking of being a caregiver in the most recent meaning, i.e., caring for elderly parents or family members or a medically needy person and being deemed their Caregiver. I am also adding to that list caring for our families on a daily basis, or our pets, or others whom we encounter who made need some type of regular care.
By extending the scope you can see that we are very likely to become caregivers at some point in our lives and we best be prepared to deal with it in the context of RA.
So how do we do that? Well, as I have often shared with you, planning is an absolute necessity when managing RA and if you add caregiving tasks to that it is even more crucial to plan. By that I mean take a close look at what those caregiving items are exactly and how can you accomplish them? For those with a busy family and all that entails, setting up a schedule/calendar can be very helpful, RA notwithstanding. By visually reflecting on upcoming demands you can carefully and consistently plan ahead in terms of your own physical ability and disease activity at any point in time. Divvy up what needs to get done among all the family members taking into consideration your own situation. Not to mention that this can also relieve some of the stress and worry that goes along with a busy family life.
For example, when I came to the very disquieting realization that cooking was no longer a possibility for me, it meant coming up with a way to still get food on the table for my family. After much discussion and compromise we worked it out and it made a huge difference in my RA management and in fact, meant I could do other tasks that did not bother me as much as cooking.
This applies at the workplace as well. You need to manage your schedule so the fact that others "need" you does not trigger a flare, fatigue or unnecessary pain. As the Director of three elder service programs I have a "grant season" where I am swamped with the demands of fundraising. If I did not plan in advance and do as much work ahead of time as possible I would be completely overwhelmed and unable to respond to the needs of the staff I supervise during that time and beyond. Instead, by planning I can alleviate a lot of stress and do a much better job while managing my RA.
Of course, despite any amount of planning we have to be prepared for the unexpected because life happens and we have to be able to respond to caregiving needs we did not anticipate. Asking for help may be necessary either professionally or from friends or other family members. Even if you have always been the go to person you need to recognize that if you hope to successfully manage a chronic disease like RA it may mean making some changes in the way you help others. After 20 years of having RA, I am pretty adept at knowing my limits but that still does not mean I don't push those limits from time to time.
I have learned that I must be honest with others AND myself when it comes to what I can and cannot do. It will only take a few times of being completely debilitated from overextending for you to learn that it is not smart, not productive and in the end no one benefits.
Take the time now to plan out how to be a smart caregiver. Everyone will be better off!
Do you find the pain scale is an effective tool?