yesterday russ saw the neurologist at the va. he is extremely well known and respected in the area for his work with AD. russ and i spent almost an hour with him, discussing the many changes that have occurred in the last 6 months since he last saw him. russ has had multiple brain bleeds, thought to be what they call cerebral amyloid angiopathy (CAA), which is not uncommom in patients with AD. to make a long story short, a decision was made that it is an appropriate time to start weaning him from his AD drugs. over a long period of time some feel that the cumulative effects of these can cause weakness (which is significant in russ) as well as the fact that russ has declined so much that he is not able to do much for himself anymore. i will start by stopping one, wait a few weeks to see if there are any negative behavioral changes, then stop the other and see. we are even going to see if we can eventually wean him off the risperadol. his demeanor is so passive that that may no longer be needed as well. i am to call every other week with a status report and take him back in for a follow-up in 2 months. dr "A" was very happy to see that russ has already been admitted to hospice service.
how do i feel about this? so many thoughts were racing through my mind yesterday and last evening. as i sit and look at my dad, and see what his life is like now compared to even say 2 months ago, i know the decision is the right one. that is not to say i don't wish that things could be different, that we could still go for long walks, do errands together, laugh and have him tell me jokes like he use to. but if the drugs are no longer helping, than what is the use of struggling to get them down him, to complicate his life more than it already is and to possibly be adding to his weakness. i pray to God that this will be the right decision for him.
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8 comments:
Nancy, I will be keeping a close watch on your posts and hope russ will regain some strength being off those meds. I'm glad you have a doctor you are so comfortable with.
Nancy, I'm sorry to see your dad's decline. I had no idea. Please keep us posted on the medication situation. I've never heard of AD meds causing weakness, but I am seeing a lot of it in my mom these days. I just assumed it was part of her disease progression. Stay strong, friend.
Nancy, You've got to trust your gut on this - remember, you know Russ better than anyone. And you are doing this exactly right -- slowly and methodically. Don't second guess yourself. You are taking great care of your dad. love and hugs and strength coming your way.
Jamie
lori,
thanks for your kind thoughts. i know you understand how i feel.
betsy,
AD meds do not necessarily cause weakness but it is a possibility. with my dad's already weakness from the brain bleeds and just overall progression of the disease in the last few months, we decided it was getting to be to difficult to have him even take them. his decline has been so severe the past few months. if however we see negative behavior we will start them back up.
jamie,
thanks for your words of support and love. i really do appreciate them and the fact that you care!
Nancy, I have to agree with Jamielee. You have to trust your gust on this. I have watched you for the last year and a half. I have followed every decision you have made, and not once have I seen a decision that you made, that was not extremely well thought out. You analyze a problem, you explore all the possible solutions, and you invariability choose the best one. There is no doubt in my mind that you have the best interest of Russ in your mind. Do not let self doupt cripple you. All we can do in life is the best we can do. In your case, that is excellent.
I love you, and am ever so proud of you.
UNK
Dearest Nancy,
I hope that Russ does well off his meds.
I will continue to hold you both in my daily prayers.
With warm regards,
Pier
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