We’ve been dealing with a chronic cough and fever with ALS over this last month and it’s wearing on me. My husband is on hospice, which has been great in so many ways. They have provided regular care and are available for us 24 hours so they have already seen us through some tough situations since we decided to move to hospice in October of last year. The challenge is that hospice is not an expert in ALS and they are not there to “treat” anything. As a result after a couple of rounds of antibiotics they have decided the chronic fever and cough is just something that my husband will have to tolerate.
I couldn’t accept this as an answer so I reached out to a PA and Dietitian we know who both believe he has aspiration pneumonia. This means that the food and water he is swallowing are getting into his lungs and causing an infection. The solution is that he stops taking food by mouth for a while. Fortunately he has a feeding tube in place so he can still get adequate nutrition. The challenge is that he wants to eat. I don’t blame him, however, it is most likely the root cause of his infection and what’s making him so sick.
The problem with me finding out this information and it not coming from an outside medical professional is that he won’t believe me. I was hoping the hospice nurse would support me when I shared this possible cause with her, but her only comment was “well he has a right to eat.” Which he does… but it is probably causing him other problems.
So I am faced with the unenviable task of having this conversation with him. There is nothing good about this disease. It just robs the person of more and more of their abilities to enjoy life. My husband is alive but I would hardly call this living. I know what to do now but I don’t want to do it. He is not going to want to hear this and will most likely shoot the proverbial messenger. One of the many unwelcome tasks I must take on as a caregiver for my husband with ALS.
As you can probably tell from this post I am at the end of myself this week and between this and dealing with applying for medicaid, so we can afford care for my husband, I feel like I’m trying to carry around 500 lbs of luggage while climbing Mt. Everest. So I’m taking a little time for self-care and as I’m writing this I’m sitting in a cafe with two books beside me and drinking an iced coffee to smooth the edges a bit. Hopefully tonight when my four year old son “toots me” (yes that is what is sounds like), rather than order him into his room to put his pajamas on, I can giggle with him and we will fall down laughing.
The sun will yet shine…