1st Sep, 2002
Real Living with Multiple Sclerosis
IF WE LOOKED toward the future and tried to guess what our lives would be like a year from now, none of us would truly know what to expect. There really is no way to know if things will stay the same.
I found this out for myself several years ago. I was at a conference and our speaker asked each of us to write down on a sheet of paper the present date and 10 of our biggest concerns. We were told to put that slip of paper away for 1 year. We were to take it out at the end of that time and see if any of the worries we had then were still in our lives. I was amazed that the 10 things I'd written down were no longer a concern-in fact most of them were nonexistent. I'd done nothing special to change any of those things; it just happened.
One way we can control our future, however, is to be aware of the rewards found in being an active member of a support group. Sharing our feelings and thoughts with others can ease part of our burden. Exchanging information and hints on how others deal with their caregiving problems is one of the many compensations of being part of a support group.
Being a primary caregiver can be a struggle. Our emotions can become overwhelming as we turn our thoughts and feelings over and over in our head in an attempt to come up with a way to improve our loved ones' health. Each of us is aware that mild to severe emotional consequences can arise from the pressures of being a caregiver, yet some of us still neglect our own emotional health.
Keeping abreast of all new MS developments and research, including medical, economic, and legal issues, is important. When we are miserable and unhappy in the present, it's foolish to expect to be happy in the future unless we assess our present situation and make changes. Some times we may even feel that our life will inevitably improve. To wait for something to happen in the future to eliminate our present pain is wasting today.
Annie and Mike
Annie's husband Mike has primary progressive MS and uses a cane. At the moment, their situation isn't too dire, but they both accept the fact that a crisis could be just over the hill.
Annie has a growing concern that, before long, Mike will need more of her time and assistance. She and Mike are preparing for the future by investigating all of their options and accumulating all the information possible about MS. Mike goes to the local library and uses their computer to stay up on the latest news concerning MS. He is also interested in holistic living. Although Mike is having some memory problems, he is willing and able to discuss his feelings about their future with Annie. He hasn't closed his eyes to what is happening to his body. Both of them are making adjustments to the present situation and the future. Together they are taking steps that will make Alice's future caregiving easier.
We all need to keep a realistic view of our situations. When the care recipient is your spouse and the going gets tough, you may not have a shoulder to cry on. Plans and dreams need to be altered. Life as a couple is no longer part of the equation. Intimacy changes in most cases. Even under the best of situations, the relationship must be modified. The freedom to take a vacation or to come and go at will is gone. If both husband and wife have been working, adjustments must be made if one must retire. Difficulties arise when only one paycheck comes in.
If a parent has MS, your spouse may be there to help you and the commitment
may be shared. If you are lucky enough to have siblings that live close
by you're not so alone. Anytime you're a primary or part-time caregiver,
whether for a child, spouse, or parent, you need someone to share the care
and uncertainty. All of us have feelings of loss, but by making allowances
for these losses and planning for the future, life can be easier.
© 2002 Real Living with Multiple Sclerosis