Last week I reported that Jim was having surgery. That went fine. Then he was readmitted to the hospital on Tuesday and got out today. The stress from the surgery caused his Crohns to flare up. He's fine now...has more energy than before this surgery thing started.
We learned some lessons. I hope there won't be a next time, but if there is, I hope we can remember them.
Remember that each person is a whole body, with each issue impacting on the other. With chronic issues such as Crohns--or PD or LBD--plan ahead to limit these clashes. For instance, if Jim had increased his Crohns drugs prior to surgery, he might not have had to experience a flare-up of Crohns. For someone with a Lewy body disorder, a similar preventative measure might mean adding a small dose anti-anxiety drug a few days prior to a known period of stress, such as a move into residential care or a visit from distant relatives (see 4-3-15 blog).
When a crisis occurs, don't let the urgency blind you to the power you still have to change the situation. When Jim started hurting, we forgot all about the fact that the first thing they always do for a Crohns flare-up is "nothing"...nothing to eat or drink, that is. All we could think of was getting him to the hospital, where he'd have professional help. And so Jim sat in the ER for eight hours waiting to be seen, another two lying in an ER bed waiting to be admitted to the hospital and then a whole day afterwards with nothing to eat or drink. That was exactly what he needed but, "I could have done that at home and been a lot more comfortable," he said later. Have you had experiences like this as a Lewy body disorder caregiver. Times when you let the crisis take over and it made things worse instead of better?
Be willing to speak up, ask questions and demand answers. Most of you have been in situations where your loved one was treated for something other than Lewy symptoms, and perhaps given drugs that were either not helpful or even harmful. Jim was admitted to the hospital with a diagnosis of "infection," instead of Crohns. Well, they look a lot alike on an x-ray and, "In the ER, the tests tell the story," a nurse told us. But patient history means a lot too, and we caregivers are the ones with that in spades! Naturally, I was making myself heard on the subject. I didn't like to see Jim getting antibiotics that he probably didn't need! Finally, after the blood tests came back negative for infection, they stopped the antibiotics. I don't know if they would have then if I hadn't made a fuss--they might have left it, "just in case." When Jim was finally given something for Crohns, he improved immediately.
Please understand that we greatly appreciate the generally wonderful care that Jim had during his stay. The staff were all very kind and helpful. I simply wanted to pass on something that we as caregivers seem to have to learn over and over...we actually know more than we think we do--but we let the fear that a crisis generates cover that up and we end up looking for help--often in places that know less than we do about our loved ones and their specific issues!
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia