The last few weeks have been quite challenging. At last update, we were trying to dial in meds that would help Dad sleep more soundly, as well as keep his anxiety under control so he could attend daycare without flipping out. I'm happy to say that after changing his meds he has been attending daycare successfully for the last 2 weeks. Of course, I should probably qualify that by defining "successfully," as not getting any calls asking us to pick him up early. Dad isn't participating in any of the activities as far as we know, he just watches. And sits. But he no longer tries to open the door to leave. He is also, for the most part sleeping well enough that Mom can also sleep.
However, the last few weeks have also seen a huge decline in his abilities. It's almost shocking to me how each week another thing that he used to do perfectly is suddenly going, going, gone. Here are some examples:
1) He wears disposable underwear 24/7. For the most part he stays dry, but on a semi-regular basis he is no longer able to tell us that he needs to go until he has already gone. It was extremely stressful for Mom to wake up in the middle of the night to see him standing in the middle of the room, and realize he tried to use the bathroom, but couldn't untangle himself from the CPAP machine, or undo his clothing quickly enough. Once she put him in the disposable underwear she could be very matter-of-fact about taking him to the bathroom to change him. She also had a few nights where she slept so deeply she never knew he was getting up and having trouble. One day she was thinking out loud and said, "you know, it's too bad there isn't some kind of reverse pressure sensor that we could put behind his pillow, or under the floor mat next to the bed, so if he got up, it would trigger an alarm." Mike and I talked it over, and he remembered he had a spare motion detector that we used to have on our driveway. We put it on a dresser facing dad, and the transmitter on Mom's nightstand. It worked GREAT! The first night was hilarious because she woke right up, turned off the alarm, but then turned it on again. Mike and I sleep next door and I heard the transmitter chiming over and over again, all because Mom took Dad to the bathroom, then went back herself, crossing in front of the motion detector each time. Ha! After that night we set it on the lowest volume and covered the speaker with packing tape. It was still loud enough to wake up Mom but we never heard it again. And she remembers to leave it off until she gets back into bed. :)
2) Over the weekend he lost his ability to swallow his meds and supplements. I don't mean that he can't swallow, he just doesn't know how to do it. He puts the meds in his mouth, drinks the water, then spits out the pills. When Mom asked him, "What are you doing?? Your'e supposed to swallow them!" He said, "well it's been a long while, I can't remember how anymore." This was in the evening, and he had just swallowed them perfectly that morning. After that it was one frustrating haul for Mom 3 times a day, trying to get him to swallow all those pills. Finally I called the pharmacist at his primary care to ask if it was okay to crush some of them and mix them with water, or in food. The pharmacist was great, told us which ones we could do that with, and which ones we definitely couldn't do that with. She also suggested that we discontinue some specific supplements because his recent bloodwork looked great and he probably didn't really need them anymore. Finally she said she was going to work with the pharmacy to send us different version of some meds. I'm not sure if they are easier to swallow or in liquid form, but we shall see when they arrive. One trick we discovered that seems to work (at least it's worked the last two nights!) is that we have Dad sit back in his armchair with his head tilted back. Mom places the pill on his tongue and I immediately give him water while keeping his head back. After a few swallows the pill is down. Another pill is a capsule, and we empty it into applesauce to give him after meals. I end up feeding it to him to make sure all the little beads don't get left behind in the dish.
3) He is sometimes having trouble with forward motion. Meaning, if you want him to go anywhere, you can't tell him to just go anymore, you have to lead him by the hand, or gently/continually push him from behind. Otherwise he will just stand there. Physically he is still very capable, even on stairs, but he just forgets what he is doing, and needs continual encouragement.
4) If he starts talking about any one thing, chances are he'll be talking about that one thing all day. Sometimes if I agree with him, I can get him to move on to what I want him to do, but sometimes not. It's just a crapshoot.
On the plus side, he can still read the bible, esp. now that he has the large print version. He recognizes his brother's voice on the phone, even though (this morning at least) he doesn't talk anymore, he just laughs. We have a canine visitor with us for a couple of weeks, and I think he really likes her. She IS a very pretty dog, and he enjoys watching her go here and there.
So here we are. Dad is still in there, only it's getting harder and harder to see, as he becomes progressively impaired. We appreciate everyone's prayers, esp. for Mom. We continually tell the kids that they are here so Mom doesn't get worn out trying to take care of Dad alone, and get sick herself. But still, when something else starts to go she fights it as long as she can. However, I have noticed a calmer spirit in her. She doesn't get angry as often, she will take a very long time to coax him forward the few feet to the bathroom, instead of snapping like she used to. All this I see as her way of coming to acceptance. What she wants for him right now is to remain peaceful in mind and heart.
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