Sunday, June 21, 2015
It has been a hard couple of days but a wonderful Father's day
So on Friday we went over to the VA for an appointment. We actually got done in 3 hours which is a record! First we went and saw the pharmacologist who ordered his shots and gave us a schedule of how to clear Dan out so that he can have his peg tube (feeding tube) put in on Friday. Then we went and saw the Speech therapist and the person from the company that we are ordering his communication device thru. (Tobii Dynavox) Which is great since I can only understand him every now and then. Usually when he is yelling at me. Which is sad since he never yelled at me before he got sick. Back in January he changed to a yeller. Anyway while we were at the VA we went by and picked up his cervical collar. He said it really helps when he is tired and is having trouble holding his head up, which also helps his back. Then we went by to see his nurse Nikki. She was able to help us check and see why we didn't have a CNA yet and gave me some advice on how to help Dan better. She had had a really bad week because 6 more people had been diagnosed with ALS in the past 10 days. That is a LOT! I told her I really want to start a support group so that the ones who had been there can help the ones who are just starting out. She recommended someone whose husband has already died to work with because she would be really good, too. After we saw Nikki we went down to see Brent who works with the PVA. He didn't even recognize Dan. He told us that since Dan has gotten so much worse that Dan could get more money more than twice what we are getting now. That will help a whole lot! Since then we can hire a CNA and get some help in here. He told us that we had to have a quick check up with the benefits people so they could see how much worse he had gotten. After we left Brent we went and picked up the shots, Rick had ordered and we headed home. When we got home we were all exhausted so we took a nap. Saturday we were super busy again and then today the kids came in to see their dad. Well all but 2. One is on vacation and the other lives in another state. It was great to have them all here so that was my favorite part of the weekend! Our son from another state skyped in and the daughter on vacation called and sent a video to her dad. It was a sweet time for him. I love my family so much but some days it is hard to cope with having a husband who is sick and he is tired and having such a hard time with not being able to take care of himself!