Caregiver Perspective: Right to Decide
I often feel like I have multiple personalities, and knowing which one I should be using can be difficult. Sometimes I know who I want to be, but it’s not always the one I think I should be. There are even times I know who I am and who I should be, but I don’t want to be either of them.
I act as my husband's medical decision maker
Many times, I’m expected to act “in the place of” my husband. I’m his medical decision maker and his power of attorney. Not only do I serve in both of those roles, but he does not want anything to do with his medical condition. He relies on me to interact with all his healthcare providers and insurance carriers. I get all the information about options and discuss the pros and cons with the providers, and then I give Lynn the Reader’s Digest version plus my recommendations. He then decides what he wants to do. I usually communicate the decision. All Lynn does is get on a call or participate in a conversation long enough to give consent for me to handle it.
I make recommendations based on research
I know all about Lynn’s health and the medications he takes. After years of observing what works and what doesn't, I not only manage the triggers that produce fatigue to reduce their effects but recognize immediately signs of immune distress. If there is a change in color, texture or other body reaction, I'm immediately clued in that something is amiss and take action checking for a fever, hypoxia, or other reaction. I thoroughly research his medical issues — both MS and the secondary ones. When I make a recommendation to him about a course of action, I have taken all that into consideration, and I know what's best for his health. However, he still tends to push back because he hates to take medication and a part of him still denies that he has a chronic health condition.
Decides by not deciding
Many times, when I tell him he needs a change, he wants to take time to think it over. Being a hard-headed, die-hard procrastinator, he puts off making a decision as long as he possibly can. He often decides by not making one. I know often he wants to say "no" to an option, and by not saying anything, he's saying, "no." It drives me crazy because I know he's not only hurting himself, but he's hurting both of us.
Letting him choose the wrong choice
Letting him make his own decision at such times is very difficult for me. I’m responsible for keeping him healthy. The consequences of him making the wrong decision may result in him suffering physically and emotionally and may not be correctable. I know in the long run, he’s going to regret not listening to what I told him was the best option. He always comes back later and tells me he should have listened —but he doesn’t— time and time again. Lynn has to do it his way.
When he's not listening to me, I want to be able to act as his surrogate personality, but I can't. I want to be the medical decision-maker and make the decision for him that is for his own good, but that would be wrong. As long as he remains mentally alert and independent and able to exercise free will, I must let him make his own decisions good or bad.
Impacts us both
Not only though does his bad decision-making impact his health, but it affects my life too. When he makes a bad choice and gets sick, I have an increase of all of the following demands on my time and energy as a result:
- He needs more attention and care because he does less for himself.
- When he’s weaker, he's more challenging to move which causes more strain on my body.
- Family members need frequent updates and reassurance.
- It’s emotionally draining trying to reassure him and deal with his anxiety and agitation.
- He needs more communication support if he’s in the hospital, so I can’t go home to shower.
- I get much less sleep and limited access to regular meals if in a hospital.
- Extended illness brings greater financial burdens.
Must walk away
I have to accept the fact that it’s okay to be him when we're of the same, but when we have a difference of opinion on medical care, I have to be able to split off that personality and walk away because he is his own person. He has a right to decide his own fate.
Right to decide
I lived such an event this past summer. Lynn’s carbon dioxide levels were climbing due to his mitral valve flailing. His lung functions were beginning to crash. I had minutes to decide whether to put him on a ventilator or essentially, let him die because nothing was working. We both have always said we would never agree to put him on a ventilator to live if his diaphragm became too weak. I knew from previous episodes if he went on a ventilator, he might not come off again, but I felt this time was different. He had been doing very well with breathing until this event. He had been singing with good volumes so his diaphragm was in good shape. Most importantly, God seemed to be telling me everything was okay for me to say yes. Therefore, I was comfortable going forward with giving permission to put him on the ventilator. I was confident he could wean himself off again. However, this was one time I was not willing to make that decision alone.
Made his choice
I felt Lynn had the right to choose. If for some reason Lynn could not wean himself off the vent later, he would be the one stuck on a ventilator for the rest of his life. Therefore, he had the right of final refusal. The doctor did not want me to take the time to ask Lynn what he wanted to do. I told him they had to over-oxygenate him a few minutes to give me time to let him make a choice. The doctor reluctantly agreed because he understood the gravity of the decision we had to make. I explained to Lynn what was happening while he was still being supported on manual ventilation so he was never at risk. He agreed with me that the odds were good that he could wean himself off.
Everything turned out great. I made the right decision. Lynn went on the vent, had the heart repair, and came off the next week without any difficulty. Thought I had the right to decide on the vent alone, some decisions just take two people.
P.S. He asked me later what I would have done if he could not have answered. I told him I would have moved forward anyway, of course, because God already told me it was okay...
Does anyone else in your family have MS?