Is That Your Final Answer?
Once you become a full-time caregiver to your spouse, the relationship takes on many new dimensions. While in the traditional marriage roles, the husband takes care of the wife and makes many of the final decisions regarding big issues, if the one being cared for is the husband, and the one doing the caring is the wife, those roles often reverse. That reversal has happened to me and my spouse, Lynn. Though I try to maintain our husband/wife roles in our marriage, I have to admit that now that I do almost everything for him and our home, it's really difficult not to just make all the decisions without including him.
When Lynn was first diagnosed, he took a "bury your head in the sand" approach to learning about MS. He felt he had learned enough about the condition watching his Dad become progressively worse when Lynn was a young adult. I think he was afraid to find out that treatment options had not improved since then so as I searched for information, he refused to hear what I was finding out. Gradually, as I would ask questions when we went to the doctor, he heard more about the new treatment options and take a greater interest. Though his interest increased, he still prefers not to be very involved in managing his illness other than making sure he abides by what we (medical team and me) tell him to do. Basically, he still only wants to know what he specifically asks about; however, he wants me to know it all and make decisions on his behalf. He also wants me to keep up with all his medical information and to discuss options with the doctors. He wants me to make recommendations to him and explain his options. For decisions that will affect how he feels, he will make those. For most of the others, it's up to me.
Having a medical background, I definitely have opinions when it comes to drug treatment or therapies. I often campaign for my position with him trying to use my influence to get him to decide the way I think is best. He doesn't always make that choice, however. Especially in the beginning, it almost seemed at times that he would select an option in spite of what I recommended. In almost every case, he found out that my recommendation was best and he would come along to my way of thinking. He even admits now that I'm usually right...but....he's that he's going to choose his own way...again. So, I bite my tongue and let him find out for himself.
This approach seems to work best for us while he's doing pretty well but I learned early on that there is a real need to get all the forms filled out and given to the right parties that will allow me to have access to his records and authority to make decisions on his behalf. If you don't have those forms filled out, getting information just isn't going to happen unless the patient is right there giving verbal consent. Under HIPAA (Health Insurance Portability and Accountability Act) no one can have access to personal health information without the signed consent of the patient. The only exception to that is if the patient is unable to make decisions due to physical or mental incapacity (which may at times require a judge to determine) Therefore, one of my first priorities was to get him to sign consents to release all his personal health information to me. Once those release forms were completed and signed by him, I was able to talk to his healthcare providers, pharmacists, therapists, etc. directly and manage his care the way he wanted me to. If the healthcare provider does not have access to the consent forms, I have to hand the phone over to Lynn to give consent each time. That's a pain and frustrating.
The other document I found that I needed was to be named as his medical decision maker in the event he was unable to manage that role. This document allowed me to make decisions regarding his treatment when he was in the ICU a few years ago. He was conscious and periodically alert but often was confused or too tired to participate in decisions. This document allowed me to talk strategy with his healthcare team and make decisions the way I knew he wanted them. I always discussed them with him afterwards but at that point, he just wanted me to handle everything. He felt too bad to be bothered and he totally trusted me to act on his behalf. Having this authority really helped keep things moving at a time when delays could have caused more setbacks in his recovery.
Once I started assuming that role however, he was reluctant to take it back. I often have to "make" him make the decision by just refusing to decide. I realize doing research to find answers and the effort needed at times just to figure out what they are talking about can made the process of "deciding" just too difficult. Therefore, I try to anticipate what he is going to need to know and making sure he is informed in advance. I also am in charge of keeping other members of our family informed about what is happening to him.
Making decisions on your own is often difficult but it's much harder to make someone else's decisions for him/her when they choose not to participate. If you know that is likely to happen, try casually bringing up the issues and talking them through in advance. Having an idea of what to expect and what you will need will truly help a lot with the burden of responsibility required.
Have you ever experienced any of the following financial struggles due to your MS?