I agreed with him, and said that I was beginning to understand what the oldest daughter meant when last summer she would say she just couldn’t accomplish a task. It is not a lack of initiative but something physical, almost a weakness, but it cannot be completely explained that way. It might be more like a tiredness that should not be there. Or as Hubby stated a lack of being able to…
Hubby has had a bad week of just totally not being able to function beyond the simple things such as helping with the dishes and the care of his dad. I am beginning to seriously consider that he needs to start a more “killer and toxin removal oriented” treatment sooner than later. There is no way we can afford the blood work that would be required if we were to visit with the Lyme doctor. While everyone says that you should not self-treat this, it seems to me that using a standard protocol would be better than doing nothing. There seems to be no answers for those folks that cannot get the necessary treatment. Hubby is 100%VA –which means he has no outside civilian coverage. Paying out thousands on labs is not financially an option for us right now. So keep us in your prayers as we consider moving forward with his treatment options.
As far as our Lewy resident, he has developed an exhaling noise that the nurses assure us is not his lungs. It is like when he exhales he pushes it through his sinus cavity in such a way to make this horrible noise. Hubby says he thinks it is the vocal chords—the nurse found the source of the noise with her stethoscope. At any rate it can be at times distressing and to say the least it can be a point of distraction. Literally can drive nuts! It does not seem to be something he does at will and it is not all of the time. It may have something to do with the way his body (parkinsonism) tenses up.
Recently, he would not wake up enough to eat his lunch, at least not coherently awake…Hubby got his lunch into him and he ate the whole bowl full with his eyes shut most of the time. Like a man eating in his sleep. After getting him fed we all gathered around the table to eat our lunch but this exhaling noise was distressing to our digestion systems so I got up and quietly closed the dining room door, in order that we could attempt to eat without the stress of hearing him do something a kin to a loud wheeze. Within a couple of minutes I could hear him hollering so I got up to check on him. “Open that door!” I assured him that I would leave it open. He never ceases to amaze us. Here we are sitting around our table feeling a bit solemn over what might appear to be his new normal, sleeping through a meal with this increased exhaling noise….and then for him to come to and demand that we leave the door open!
He has begun to sundown more in the evenings. He used to get up from his nap and be fairly clear for an hour or two but this week he has been sun downing. I am beginning to think this is his new normal but then with LBD, these things seem to come and go. He has been sleeping more and there is less coherent conversation with him due to more sun downing. He does sleep quieter at night and for this we are very thankful. Hubby usually only gets up a couple of times a night to change the bed pads and to check on him (still having to check on him from time to time to make sure he isn’t upside down in the bed.)
He did not sleep well last night talking a lot in his sleep and this morning he was still somewhat vocal and it seemed that it was going to be a bad day for him. So we gave him something new- Bach Rescue Remedy. I read about this product on the Lewy Forums and having a friend that swears by the Bach Flowers, I thought it might be worth a try. It did seem to calm him down. We tried to give him one on Friday night when he was upset over some hallucination but he adamantly refused to eat this “little piece of candy” as if it was poison. So we were glad that he was willing to eat it this morning. The good thing about this is that it did not knock him down like the sleeping pills. It did seem to make him rest more peacefully in his chair without the sleep of the dead affect. Over all its been a pretty decent day for him.
The three younger ladies have been out of the house all weekend. They are off on an adventure. The parents got to realize how much help they are to us…but at the same time, we have enjoyed the opportunity to just be alone for a few minutes here and there.
I know it has been a long while since I last wrote. Life was full of busyness. I will try to be more frequent in the near future.