Trisha,

I was my husband’s caregiver for three and a half years and I would like to share my experience with you. I was his “case manager” throughout. Yes, I certainly made his intake of water and feeding my business. I kept records of everything. It included a list of medications he was taking, the dosage, the problem it was prescribed for and the dose. Whenever he had to go in for a procedure, I printed out the list and handed it to the nurses. It made things so much simpler for them and for me. Because my husband took his medication through a feeding tube, I always checked with the pharmacist that any new medication he was prescribed could be crushed or could be tube-fed. That, I learned was important because if we were not careful, John could overdose on some of the meds because of the way it was administered. I learned about possible side effects of meds and watched out for those. For example, when he was hospitalized for pneumonia, he had symptoms of serotonin syndrome and I was able to discuss the case with the hospital pharmacist. When John was going through radiation, I made sure he had his saline soaks several times a day. I kept track of his blood pressure and temperature daily and kept a record for the visiting nurse. I discussed with his palliative doctor about why John couldn’t be put on hydromorphone (because he had hallucinations when he was given that in hospital). I talked to his friends about how we could better socialize since John could not eat or drink but would still like to see his friends.

Sometimes doctors assume that the patients would be able to tell them everything but that’s not always true. My husband was so muddled sometimes that he would not be able to talk about the doses of his meds accurately, for example. He could not always advocate for himself because he was physically so weak or he might be embarrassed to admit to something, like feeling dizzy at the moment he was talking to the doctor. I learned what I needed to learn by following this forum and by talking to all the professionals. I made sure I took notes and wrote down questions for doctors ahead of time. At doctor’s visits, I would tell the doctor that I had a certain number of questions ( three, or four, or five) so that they would know not to sprint out of the office becfore I had finished.

There’s a lot a caregiver can do. It helped me greatly in coming to terms with John’s illness. I was playing a very active role and that was how I stayed even-keeled. It is something you can do too, not only for your husband but for yourself.