Meet Elaine
Meet Elaine M. Leonard. Elaine has been a caregiver to her husband since April of 2002, when his MS started to progress.
What does it mean to be a care partner?
To be a care partner means that I support my husband in his fight with MS. Depending on my husband’s condition, I dedicate about 63 hours a week to being a care partner. This includes house cleaning, meal preparation, phone calls to health care providers and government agencies, grocery shopping, going to my husband’s doctor’s appointments and handling complex financial matters (financial planning, tax preparation, investment advice).
Some don’t prefer the term care partner, but rather see themselves as fulfilling the duty of a spouse, child, etc. Thoughts on this?
Although I am a spouse and took the marriage vow to stay married for better or for worse, I sometimes feel that I am his nurse rather than a spouse at times. I do prefer the term “care partner” for this role, though.
Describe some of the emotions you go through as a care partner.
Although I am deeply satisfied when I can complete a task successfully, I am physically and emotionally exhausted most of the time. I sacrifice my own life at times to take care of my husband. I miss work, get little sleep, and have little time for rest, relaxation, and fun. I am amazed that I can still function at times. Still, MS has brought my husband and me closer together since we are fighting for the same thing, which is to deal with MS as best as we can. I am happy that we are care partners.
Describe your initial thoughts and reactions to your husband’s diagnosis and your new duty as a care partner.
It was a relief to finally get the diagnosis, which was in 1997. The diagnosis has strengthened our marriage, but initially I was angry that our lives had now changed. I was jealous of other couples who could do things at the drop of a hat. I have been in therapy for many years because of my anger and don’t think that I have really gotten over these emotions. But now, I have more compassion for those with disabilities. When things are going well, I appreciate life more so I am much happier during these times.
How do you balance your career or personal life with being a care partner?
I try to get away from my care partner and work duties at least for an hour or two per day so I don’t burn out. I walk every day and do yoga once a week. I also exercise at home three times a week. I read books, newspapers and magazines; attend concerts, plays, musicals; crochet, watch TV, e-mail friends and family, and volunteer as a tax preparer for a nonprofit and as a board member for a professional organization.
How has the MS Society contributed to your success as a care partner?
It sponsors a care partner support group, which I try to attend each month. I also enjoyed the Alaskan cruise a couple of years ago because the MS Society had people available in case my husband needed anything. Finally, the social workers and Scott Ahlgren have been very helpful with providing resources to take care of my husband.
Complete this statement — The ultimate reward for caring for someone I love who has MS is …
to see that my husband appreciates what I do for him.