OK.

Ok. I think this is the third time that I have tried to sit down and blog. I am on an airplane and have 1 ½ hours so maybe this captivity will help keep me focused. I think that it is getting harder to share because the journey is getting harder. It is getting more difficult to leave Mom. It is becoming more consuming to be with her. Kind of tough to work and come home and work. Don’t want to take care of her – don’t want her to be sick but also know beyond a shadow that there is no other place I would rather be. Wondering what the next year of my life is going to look like. Afraid. Enjoying my family. Being with people always. So many areas of life can be so bittersweet. Unpredictable. Totally beyond understanding. Wanting answers, wanting healing, wanting peace. Want to be happy without having something else nagging at my shoulder. Wanting honesty, but wondering if I can really handle it. Wanting understanding and ignorance at the same time. Wandering through thoughts and feelings.

Ok. To explain where we are. Mom has been enrolled in hospice for about 1 ½ months now. I am not totally impressed and convinced that this is where we need to be right now, but I am trying to adapt. Jer and I have always agreed that we wish we had enrolled Dad into hospice earlier. But his issues were more consumed with pain. Hospice is so good at dealing with pain. Thankfully, Mom is not in pain. Well, only occasionally at the insertion site of her PEG (feeding tube), which seems to be taken care of with liquid ibuprofen. I am so glad that I don’t have to give her anything more potent than that, for fear that it would suppress her respiratory function. The biggest issue remains to be the incredible amount of saliva she is able to produce. I think we have gotten to the point that nothing is making it down to her stomach through her esophagus. It either goes down her trachea to her lungs or, hopefully, comes out her mouth. We have three different medications that we are using to help minimize and dry up some of these secretions. One is in patches behind both of her ears. The problem is that the skin is becoming very excoriated and bothersome to Mom. The second is a red syrup that goes under her tongue, only 1cc, but most of it is ending up on her shirt, bathrobe, or the carpet. The third is a liquid that we only put two drops under her tongue every 4 hours. It totally tastes horrible. I have checked. Not fair that the only thing Mom gets to taste is so unsatisfying.

Ok. The second and third issues are interrelated. She continues to lose weight even after we started using the feeding tube. So about a week ago we increased the number of cans of food she is receiving daily. Six cans a day instead of five. More calories is good, but it is not normal food. And I have always expected and dreaded that one of the major side effects of having a diet solely of tube feeding is the diarrhea that can follow. As all nurses know tube feeding =’s liquid stool. ALS affects all muscles and sphincters and FTD is the cognitive functioning. All these things against us are not a good combination. But hopefully we will maintain her weight and manage the side effects.