So Jon went to see his doctor a few weeks ago - like the first week of January I think it was. He had a lab slip from his last appointment with the surgeon in November - he was to get his B12 and D levels rechecked since they gave him ONE B12 booster shot at that appointment. They said to get the labs done in January. So with the upcoming visit to the family doc, I made sure he got rechecked before then.
Fast forward to the visit. Jon pleads with the doctor to do something because his pain is getting worse and unbearable, and he can't take it. The doctor silently stares at his computer and clicks all around at who knows what. He softly says I see you had labs done earlier this week. I speak up and say yes - what were the results? He says "The D results aren't in for some reason, and your B12 is borderline, but not that bad. We do still need to get it up." I reply WHAT WAS THE NUMBER? He says "It does need to come up some, but we have to give it time". I repeat WHAT WAS THE NUMBER? He finally says 179. 179? Seriously? It was 178 three months ago. He has been taking obscene amounts of B12 (he takes 7500mcg/day) and he had the booster shot in November that everyone said would help tremendously. So besides the fact that it's obviously NOT coming up at a reasonable pace, 179 is NOT acceptable. His neurologist at Hershey (who discovered the problem) stated that his levels should be around 1,000. So Jon spoke up (which I was proud of) and said no, Hershey says it needs to be 1,000. Doctor simply stuttered and moved on to the next topic. He is thinking out loud and says "Have you ever tried Neurontin for your pain?" To which Jon & I both quickly replied YES! Mind you he was on around 3,200 mg every day for oh, 5 years?!? But obviously he didn't remember that or bother looking (and yes...it's on his chart med list). He then says "Have you tried XYZ (the name is slipping my mind at the moment..)?" To which we replied YES. He can't take that because it tears up his stomach. Again - on the chart med list). So he says well, let's try Lyrica. He had prescribed it once before, but we were in the midst of a Medicare and secondary insurance issue and it wasn't approved. So he said he would try again to have it approved. Fast forward a little - it was approved for 3 years at 75mg twice a day. Praise God! He also then says, well maybe we can increase your Imipramine, but maybe I should check your bloodwork first. So that's where he left things. They gave him a B12 shot in the office and said they will give him one monthly until we can get his levels up where they need to be. We left and got the labs done.
Last week we got a call that his Imipramine levels were borderline toxic. Doctor states he will "have to keep a better eye on that" and that he should decrease his dose from 5 to 3 pills a day. Gee, glad he complained he was having more pain that prompted you to check his levels....ugh. So, here we are and he is trying a new medication (the Lyrica) and decreased his Imipramine. However, he put a call in to the doctor yesterday because his pain is getting unbearable. It seems his meds are just losing their effectiveness. The doctor increased the Lyrica to double the dose, hoping it will get built up in his system faster. So we wait.
He's falling more, his headaches are worse, his memory is worse. We had a couple over to watch football on Sunday, and had a nice time. Yesterday he says to me "Hon, Nevaeh said R & S stayed all day yesterday, is that true?" I said yeah, you don't remember? He said not really. I remember them being here, but not really details. How late did they stay? I honestly find it so sad and heartbreaking. I know it's just a very, VERY small taste of what families who have loved ones with Alzheimer's go through, and it's sad.
So yesterday I put an emergency call in to MOM. I said mom, Jon's going downhill -- I'm gonna need more help. She already watches Riley every other Thursday. She said she could take him today overnight (she just picked him up) and next week she'll take him Tues/Wed/Thurs, so that's a good start. Jon is in bed, and hopefully won't *need* to get out of bed until Thursday morning (this is mom's off week for Riley). I'm settling in at my desk for a few hours of typing until the girls get home from school, then it's homework and dinner. Jon's mom comes tonight to read to them and put them in bed...I may just take a break from work and go to the couponing group @ church tonight...but I feel guilty. I should focus on getting stuff done here - there's so much! Hopefully this weekend I can get some baking/cooking done to have some meals in the freezer. Unfortnately, I know the signs, and I can see Jon is going down. I don't know when, but probably one of these mornings he just won't be able to wake up and he'll be in a *coma* for a while until his body regains some strength. So I need to prepare and pace myself. We have a gift card for the movies and we have a babysitter for Friday night - we were planning on a date night, so I'm praying maybe he can get enough rest these next 3 days that we can do that. Our relationship is so strained and we need that time together. Sure, we're with each other 24/7 since I work at home, but it's not meaningful time because it's kids, cleaning, laundry, bills, etc. and hardly ever just enriching time together. We're trying to make it a point more to do dates...but this is what seems to happen. It's hard to plan! So that's the life around here.
Just keep those prayers coming, we appreciate them!!
