As a care partner I am given a different set of challenges when it comes to MS. I know each MS fighter has a different set of challenges and a different way of handling them. Below are my thoughts, emotions and actions when Jenn started having issues with her MS. After my last post I received a great suggestion from Bonnie. I had been using the phrase caregiver and she said they use care partner. I was never to wild about caregiver and care partner really hits the mark and I will be using that going forward.
When Jenn and I got married I knew almost nothing about MS. I knew she had it and that it could pop up at any time and cause problems. She was not symptomatic when we got married. I was like "you have MS? You don't look sick"....one of the MS fighters most hated phrases. At that time Jenn knew a fair amount about MS but since she wasn't having any problems with it she didn't fully educate herself on it. I had no idea if or when she would have any complications from her MS. I figured we should just take advantage of this time in case things change.
When she first started having issues that is when I started really questioning things. I thought about all the "what if's" and pretty much scared myself to death. Then I realized my worrying about the "what if's" was a waste of my time and that I had to let that go and be here for Jenn now. Though she didn't say much about it I could see that she was scared. At this point I felt it was just best to "be there" for her. If she wants to talk about great and if not that's fine too. I didn't bring it up much. When I did it was to get a question or two answered that I had. I always carefully chose my time to talk and how I approached it. It was always premeditated.
As Jenn's care partner one of my biggest challenges was to watch the person you love struggle and there is nothing I could do. I can't fix it or cure it. As a guy my instinct is to fix problems it's just hardwired into me. Here was a problem I couldn't fix. I had to accept it and find the best way possible to be a great care partner. Since there is no rule book or guidelines on being a care partner I had to figure it out on my own. Challenge accepted. Since Jenn is the one doing the fighting I made myself her corner man. In boxing the corner man towels them off between rounds and cheers them on in their fight. I wanted to be the best corner man ever.
I never let being a care partner get me down or depressed. I have always had people comment saying "I don't know how you do it?". For me it's not that hard. You have to commit to being the MS fighters biggest advocate, support and leader. I am nothing special. There are thousands of care partners out there dealing with more than I ever have and they do it like a champion. My goal has always been to treat her the way I would want to be treated if I was the one fighting MS.
Like most newly married couples the discussion of having children came up. This was a particularly difficult area. Upon doing research we realized that having a child is horrible for MS. Most cases we read the women said they "never felt better" while being pregnant. Maybe it was hormones? After having the child is when the issues came up. We knew someone who had (she has since passed) a child while fighting MS. Before having her baby she was doing great with her MS and worked full time and was virtually symptom free. Five weeks after she had her baby she was in a wheelchair and never got out of it. I thought to myself that would be awful to take care of baby and your spouse at the same time.
After a lot of discussion and some tears shed we made the choice not to have children. It was very hard on Jenn and over the years she has felt guilty that her health was the reason we didn't start of family. We did take it upon ourselves to spoil our friends and families kids and at Christmas we started a tradition of not buying gifts for each other but finding a "Giving Tree" and pulling a bunch of tags off of it for children who might not have received anything for Christmas. We still keep that tradition and we have so much fun shopping for the kids.
From my standpoint what makes MS so difficult it that it has so many ways to effect you and there is no telling how long one thing will last or how severe it will get. Of course there is the physical aspect of MS and that is what people see. To me that is not the most difficult thing to deal with. I would say the most difficult things to deal with is everything you can't see. It's things like guilt and depression that really pack a knockout punch. If you suffer from fatigue and have walking issues you can for the most part plan around them. Not with guilt and depression they just linger around and constantly poke at you. To stay tough mentally is huge. Even when your health is getting worse and worse staying mentally strong is a challenge.
Jenn has never played the role of a victim. Even in her worst times she would point out to me "at least I don't have something terminal and there are always people in way worse situations than me". I have always loved this about her attitude. She really is a "roll up your selves" and get to work person. I have met others who are not as mentally tough and they play the role of victim all the time and are willing to tell anyone who will listen. I am not judging but just pointing this out. I have no idea what would happen to me mentally and emotionally if I was the fighting MS.
Another important thing I discovered for myself was to always be flexible. Even with the best of planning stuff happens and I am always prepared to change plans to accommodate the situation. It may be that we scheduled to go somewhere or meet up with friends and dizziness hits or massive fatigue. At that point we just change plans. I never feel cheated that we didn't do whatever we had planned. Jenn never planned for the stuff to happen and we just make the best of the situations.
As I pointed out in my first blog posting that being a care partner is not for the faint of heart. It is not always easy and can be very tiring but I will never stop striving to do my best as Jenn's care partner. I found that you have to be great at juggling schedules, tasks and staying flexible. Even though I do not have MS I feel very much a part of the MS community I have tremendous respect for anyone fighting MS and care partners that take their role seriously provide their fighter with love and support. The most helpful thing I have done for myself as a care partner is to realize nobody can care for Jenn better than God and I turn to Him for guidance and wisdom.
The next post will be In the beginning part 3: Good bye to employment.
Thanks for reading.
-Brent
Reject Defeat
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