Right to Decide

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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.

Lynn Doesn’t Want to Make Any Decisions

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.

Lives in Denial

I know all about Lynn’s health.  I know what medications he takes and why.  I’m aware of what triggers fatigue. I can take one look at him and recognize when his color is off indicating fever, hypoxia, or other reactions.  I know other signs that something’s amiss with his immune system. 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.

Decide by Not Deciding

Many times, when I tell him he needs a change, he wants to take time to think it over. He’s a hard-headed, die-hard, procrastinator and puts off making a decision as long as he possibly can.  He often decides by not deciding.  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 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.

Surrogate Decision Maker

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. If he remains mentally alert, independent, and able to exercise free will, I must let him make his own decisions good or bad. 

Not only 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 causing 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.

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.

Ventilator – Yes or No

I lived through such an event this past summer. Lynn’s carbon dioxide levels were climbing due to his mitral value flailing, and his lung functions were beginning to crash. I had minutes to decide to put him on a ventilator.  We both have always said he would never go 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; however, he had been doing very well until just very recently.   I was inclined to say yes to putting him on the ventilator because I was confident, he could wean himself off again.

He Needed to be Included in the Decision

However, this was one time I was not willing to make that decision without Lynn being offer the choice for himself because if he could not wean himself off, he would be the one stuck on a ventilator. Even though 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 for a few minutes to give me time to 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, and he agreed with me that the odds were good 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. Though I had the right to decide on the vent alone, some decisions just take two people.

This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC and has been reposted with permission.

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