Meet Daniel
What does it mean to be a care partner?
As a care partner, I provide physical, emotional, psychological and financial support by managing those aspects of Jean's daily living for which she needs/asks for assistance. I spend between 20 and 40 hours a week being a care partner, depending on Jean’s condition. I'm responsible for many of the household chores (cleaning, cooking, etc.), I assist with dressing and some personal hygiene, provide transportation and manage the household finances. I'm an advocate for Jean with her health care providers.
Some don't prefer the term care partner, but rather see themselves as fulfilling the duty of a spouse. Thoughts on this?
I prefer the term care partner. Being in a relationship means finding a balance that satisfies the needs of both partners. MS tips the balance in my relationship with Jean. Sometimes I need to give more of myself to the relationship and sometimes expect and accept less from her.
Describe some of the emotions you go through as a care partner.
When life falls out of balance and Jean needs extraordinary care, I've experienced emotional and physical exhaustion with feelings of disappointment, frustration, anger and sadness. I use meditation and my faith to turn over those feelings to the God of my understanding. Sharing my feelings with my support group and my friends helps me bring balance back to my life. I get a very peaceful feeling when the balance returns.
To help me maintain my physical and emotional health, Jean and I negotiate times during the week where I have a choice to step away from most of my responsibilities as a care partner and do what ever I decide I need to do to maintain my personal balance. MS is an isolating disease separating Jean from her friends and family. Finding ways to bring back that part of her life gives me joy. Seeing her enjoy the company of others and makes me more peaceful.
Describe your initial reactions to your wife’s diagnosis and your new duty as a care partner.
The diagnosis came with little surprise and some relief. We finally had an answer. For several years, Jean had been experiencing unusual symptoms and we knew something "just wasn't right." Shortly after her diagnosis, I felt inadequate, confused and ignorant about how we'd move on with our lives. Eventually, I put down my binoculars and picked up a magnifying glass; my vision of our future became shorter and wider. I've learned to let go of my expectations and look around to appreciate the “new normal” in our lives. There can be humor and joy in a world with MS.
How has your relationship with your wife and MS changed your plans for the future?
I'm a self-employed computer/IT consultant with flexible hours and understanding clients which helps maintain the balance I need. Personally, the loss of my dreams for our future was huge. The unpredictable nature of life with MS makes planning for those things in life that bring joy and pleasure more challenging. Sometimes a dinner out with friends or a quiet evening at home can mean as much as a week's vacation to a favorite place.
How has the MS Society contributed to your success as a care partner?
The people and programs provided by the MS Society gives me some of the things I need to move forward with the hope I need. I know a friendly ear is only a phone call or e-mail away. As a co-facilitator with Jean of a couple’s self-help group, I can give back to the MS community by helping others live well with MS.
Complete this statement — The ultimate reward for caring for someone I love who has MS is…
finding a better life living and spitting in the eye of Jean's MS.