Up Front
The cover story in our spring issue of The Motivator explains the challenging and rewarding role of the care partner. Whether caring for a parent, spouse, child, or another relative or friend in need of assistance, care partners must devote their time, energy, and emotions to helping a loved one.
With many of our cover stories, I am able to relate and reflect through my personal experiences. My role in a care partner relationship, however, has been limited. For this reason, I have asked MSAA's Board of Directors' Vice Chairperson Paul Favorite to provide some insight on this vital topic.
Paul's wife of 31 years was diagnosed with MS in the late 70s.Since that time, he has been dedicated to the happiness and well-being of his wife and their two grown children. While they have had many wonderful years together, Paul recently determined that his wife would be safer and more comfortable in a nearby home. (Please note that having one's MS advance to this degree is uncommon, and most individuals may continue to enjoy a full life in the comfort of their own home.) Difficult as this decision was, Paul explains how this has proven to be a positive move for both of them. Here's his story...
Paul and his wife, Anne Marie, realized something was wrong after the birth of their second child, and eventually came to find that Anne Marie was experiencing symptoms of MS. Anne Marie's father now believes that his daughter may have had her first MS event when she was just 15, but that was at a time when MS was even more difficult to diagnose, and the immunomodulating therapies had yet to be discovered. As with many people diagnosed with MS, Anne Marie began with the relapsing-remitting type of MS. Her illness, however, eventually became progressive.
Anne Marie was able to function well until the early 90s. Fortunately, by that time, the children were old enough that they did not need a sitter, and Paul took on the role of care partner. Wanting the children to still experience a normal childhood, he made every effort to keep the children from having to take on the extra burden of caring for their mother – aside from bringing her meals and doing other helpful tasks.
In addition to working full-time, Paul assisted his wife with daily care, including dressing, bathing, meals, and medications. He also handled the errands, routine chores, and housecleaning.
"The house would be messy sometimes," jokes Paul, referring to the fact that keeping up with housework was not always the top priority. Taking care of his wife always came first, and this sometimes meant extra time in the mornings and sometimes during the workday.
"Fortunately I have an understanding boss who was flexible with my hours." Paul continues. "That really helped. I was also able to have an aide come in twice each week to provide assistance, and eventually someone came in every day at lunchtime to visit and make lunch. This is a good thing to do if you can work it out financially."
Over the years Anne Marie's condition worsened, and she was affected both physically and cognitively. By this time, both of their children had finished college and moved out on their own. Friends, family, neighbors, and people from their church would come by regularly to visit and socialize. But despite everyone's efforts, Anne Marie would often be home alone.
"Having my wife home alone was a big worry to me. We had our dog to protect her, but there were other safety issues. We were especially concerned about fire, because she would have no way to get out of the house. Last year, Anne Marie and I made the difficult decision for her to move to a facility nearby."
While most people with MS are able to live a full and rewarding life in the comfort of their home, a few need the care and security that an assistive facility has to offer. Paul visited a few centers, talking to the administration and touring the facilities. He is very pleased with the one he found. Financial concerns were a big issue with getting care, but Paul was finally able to work out the details.
"Moving Anne Marie to a facility was actually a very positive thing. She receives excellent care and has constant socialization. This gives her the opportunity to interact with others throughout the day. The center also has daily programs, which include games, singing, and entertainment, plus an MS support group that meets regularly.
"While this is not what we had planned, it is a big relief for me. I can finally have the peace of mind to know that she is safe and happy. I love my wife very much and I visit her every day. This move has actually improved her quality of life greatly."
When asked about his role as care partner, Paul has kept a positive outlook. "Life is a process, and having a partner means being there through sickness and health. Everyone has problems, and I know there will always be others who are worse off than we are. Staying upbeat is very important; depression doesn't help anything. I do my best to change the things I can, always asking about my options, and I don't worry about the things I can't change. I'm very thankful for Anne Marie and our children. Being so close to my wife, I am fortunate that I could be the one to assist her throughout our years together."
