How much to fight?

In the last week Joe has met with his neurologist and his primary care doctors. After these appointments I feel less than.

I know the FDA granted approval though controversial for a new Alzheimer’s medication. I have read some literature. I am terribly concerned about the potential for brain swelling and brain bleeds. I have read information that there is doubt on whether this medication works or not. On article I read said it would improve cognitive function by 0.6 out of 30. And in my job as a pharmacist in an outreach program I know how much new drugs can cost someone.

Joe’s Neurologist has him on a list to potentially prescribe this medication for. She isn’t actively prescribing it but she is thinking of him as someone to try it with. Though she has also heard it could cost $1,000 a month out of pocket as well as before and after MRIs. She said that if it were her she would want to try anything available.

Today we spent an hour with our primary care. She told us of the joys of flooding Joe’s brain with the nutrients of a colorful diet (fruits and vegetables).

I know and I realize these amazing women feel for us. They realize how young my husband is to be facing this nightmare of a disease. They want him to be around longer. They want our children to have more time with him. I want that also but at what cost?

I don’t mean financial cost, though that has to figure in. But a year ago Joe tested cognitively at an 8/30. He has declined since then. Is it worth paying who knows what to increase that 0.6 out of 30? Is it worth the potential financial cost but more the trials of multiple MRIs?

I feel so guilty for not wanting to give it a chance. I don’t want to fight for what maybe in the future. I want to keep him as safe and comfortable as possible. Yet in my head the future may potentially be my children.

I have trouble with taking care of him and making sure he feels safe one day to the next. Right now, I can’t go any further even if the guilt rocks me.