For some reason yesterday, in spite of having just seen my PCP for pre op testing for myself, I had second thoughts about not having taken my DW to see a Neuro or Geri Pscy in nearly three years. I sat down and sent the following fax to our him. FYI: Our PCP is Board Cert in Internal, Geriatric, Hospice and Palliative Care Medicine.
July 24 3012 Dr__________ I am writing requesting your advice regarding DW's Alzheimer's. She has not seen Dr S ..or any other Neuro for several years now. I see no reason to subject her to all the memory tests which leave her in a depressed state for days therea just to determine what stage she's at. I would say 6C on the Fischer scale. She can no longer perform any of the Mini Mental tasks let alone the more sophisticated tests. As far as staging: my feeling, it is what it is, no matter what the specifics of her diagnosis there nothing medical science can do for Alzheimer's patients, other than to treat the patients symptoms as they appear with the appropriate medications. For the moment Ativan taken pro actively, not after she's agitated, Ambien and Melotoin and the occasional “generic marinol” appear to be manage her symptoms just fine
Her receptive and expressive cognition has declined significantly, but that's all part of the normal disease progression as is aphasia – reading is no longer possible and speaking is little more than a never ending search for the right word. 52 years of marriage and dating from we when we were 14 and 16 years old permits us to communicate effectively on a “wave band” no one else can comprehend
With her history of being Dx'ed with stage iv bowel cancer and having had 1/3rd of her liver excised she is certainly not a candidate for any new drug trials, nor would I expose her to the testing required.
I have complete faith in your ability to manage Sue's Alzheimer's, BUT I want to ask, do you think that there is anything to be gained by having her consult with a neuro or a Geri psych at this phase? I just want to be sure I'm doing the best thing for her. I fully comprehend is a no win situation and all we can hope for is the ability to successively manage her symptoms as they arise. Thanking you in advance for your guidance and advice
He replied within ten minutes of my transmission responding as follows: He would not suggest that I change one thing or do one more test, see any more specialists. “I've been treating your wife since 2007 and according to my notes you were aware of her symptoms for some time prior to our initial DX. I think she's doing great given her diagnosis. She's progressing very slowly and you care can take credit for some of that. Every time I see her, she's happy and smiling. Yes, she's progressing, but we discussed the inevitable changes that would occur Patients progress at different rates often due to changes in their environments, stresses or who really knows with AD. The reasons they progress isn't important at this phase, the label we place on her stage is irrelvant, there is nothing in the medical armory that will change the inevitable outcome. I wouldn't see any benefit to subjecting her to any testing or the need for change of meds as long as you are happy and able to cope with her behavior. If her symptoms change you call me and we'll deal with it. I think you're doing a great job, keep dressing her as well as you do when you bring her in she always looks so bright and cheery, she's still at home with you, and appears to be very comfortable with herself, I've never seen her really appear agitated or angry and like I said she's always happy and smiling. I wish I could say the same of the vast majority of AD patients.
What a great response, marty! He is so right - you are largely - maybe totally - responsible for her happiness! Bless you both. You are doing a great job.
I took Sid to our PCP a few months ago - his specialty is geriatrics. I updated him on all of Sid's ailments and various specialist apts. He asked me if I had taken him to the cardiologist lately, and I said - "What for? So he can put him through more tests?" He said to me - I agree with you completely, but I have to ask for the record.
I agree with you also - No more tests - the plan is to keep him as pain free and happy as possible.
Same thing happened to me when I took my dh to his neuro right after he started this fast down hill slide...and he asked if I want another MRI and I said no...We know what is wrong with him and we know now he is in the beginning of the end and nothing is going to stop this terrible condition. His reply was...I totally agree, but I just wanted to be sure you didn't want me to do something.
Hi Marty, I still take my wife to her neurologist but we have an understanding that will be no more test which her neurologist totally agreed with. She simply talks with Kathryn like you would if you were a visitor in our home.
I believe you are doing the right thing for you loved one. In my opinion our job at this stage is simply make them happy, keep them safe and do our best to care for their personal needs to the level they would if they could. To me that means if they liked wearing a dress then we help them put on their dress. If they liked Blue then we try to get them blue clothe etc.
I no longer worry if something is sugar free or not. I watch how much I give her if it has sugar and watch the Carbs but I let her have whatever she wants at this stage if it makes her happy. My Kathryn likes to go out on the front porch so I put some nice chains across so she would not try to go down the steps and fall so she can go out there and just watch the world when she wants to.
It doesn't matter what stage they are in or what anybody else thinks. The only thing that matters is what you think and that you do what you believe is right for your loved one.
as we well know its an individual choice how to proceed with our spouses care but for what its worth i agree with your drs insight-- and think your wife is lucky to have you doing such a great job. at this point, painfree, non aggression, and as happy as possible is the goal. divvi
marty, what a wonderful letter you sent and you can take a bow for the kudos the doc gave you. He must really take notice and be genuinely concerned with her well being to take the time to mention all the things that he did. She is a very blessed woman to have you as her husband and her caregiver!!!!!!!!!!!!!!! clap clap