Relationships in general are hard, whether it is a marriage or a friendship. They require dedication, ability to listen and most of all, desire. Fortunately for us, we have all three.
This December, we will celebrate 30 years of marriage. To this day, we are still the best of friends and make each other laugh every day. We have a way of feeding off each other’s strengths and help each other in weaknesses. As much as I support Tim in his daily life with MS, he has supported me in finishing my college degree, mentoring me as I returned to the workforce, and has shown me how to be a fighter. On the hardest of days, we each remind ourselves (either vocally or in our heads) that he doesn’t want to be a patient and I don’t want to be a caregiver. In reality, though, this is what we are, and our passion for each other will keep us together and going strong. Even on the hard days. We always tell people that neither of us signed up for this, however, neither of us is going to give up.
Together, we have raised 3 amazing children and we were blessed with our first grandchild in 2019. They are our world. We cherish the time with them as much as our own time together.
a partner’s perspective:
As the patient, my view is the caregiver has been thrown into a situation that they did not plan for or expect. Similar to myself. There are things my wife does for me that she probably doesn’t want to do, and I certainly don’t want her to have to do it, but I can’t do it, so she does. Many times, this happens without asking, it’s often unspoken. My wife just knows what I need and takes care of it. It’s really an amazing thing.
I feel so fortunate to be with a partner that approaches things in such a compassionate way. I have heard many stories of people that have become ill with a disease like MS, and the person who would be the caregiver has left. They simply couldn’t come to terms with how life had changed unexpectedly, and they did not want the task of caregiver. The patient is left to fend for themselves, and it is very hard as a patient to ask for help and ask others outside of your home to do things for you.
We were together before MS appeared. I think the caregiver is certainly affected by the changes they see in the patient, remembering how the patient used to be, and it takes a long time to come to terms with those changes, for the caregiver as much as the patient. All while balancing all the extra work that comes with being the caregiver.
The other thing the caregiver sees happen over time, at least in a marriage situation like ours, is that there are definitely times that the patient can’t go to a function where normally both people would go together. Therefore, the caregiver goes on their own, and the patient stays home more often. This is a big adjustment that takes time and it’s hard to accept. It’s often a large void.
There are more impacts to the caregiver than just the basic blocking and tackling of the day-to-day chores around the house. There are a whole host of life considerations that change, and they don’t only impact the patient. In fact, in many ways, the caregiver job is probably tougher than being the patient.
a caregiver’s perspective:
Caregiving in my particular situation is stepping in when my husband Tim needs an extra ounce of encouragement, needs me to take on a role he used to assume or just being present on bad days.
MS has humbled me more than anything. We lived a very fast-paced life prior to and up to Tim retiring in 2014. Great vacations, dining at expensive restaurants, and buying anything we wanted. Since then, our income has been greatly reduced and we find ourselves happier than ever. We found that while all of those trips, dinners and “things” were great, it wasn’t what made us happy. It was just being with each other that made us most happy. We are fortunate to be surrounded by amazing family and a very large friend group. We continue to be humbled by the fact that we can call on any of them at any time and they will be there for us in whatever capacity we need. It wasn’t until then, that I realized the value of a support system.
For me, the best part of each day is when I come home from work. Tim is usually sitting in our living room waiting for me to fill him in on my day at work. I am forever grateful that Tim is a great cook and happens to love doing it.
My wish would be that those suffering from MS (or any disease), would have easy access to equipment and medicines that would help improve their quality of life. Having a disease like MS is hard enough, let alone the hoops people have to go through to get medicines at an affordable cost and/or not knowing how to get equipment to make life easier and better.