I have been hasitant to put into words what has been going on around here for fear it will be jinked ! I have had a much IMPROVED husband for the past 2 weeks. He was down to the point that I had to feed him most meals, lead him to the bathroom and put him on the toilet and stand over him till finished,he could not get in and out of the car by himself,could not wash his face etc..Well what is different you say---he can now do these things again. What has changed? To begin with we stopped the Haldo and Cogentin that he had been on for a year.We started a med to get the Ammonia contient down.We got rid of a bladder infection and I stopped the Nemenda.Now how do I know what helped???I do not and the Doctor told me today he did not know either.He just said whatever you are doing keep doing it because he is greatly improved. He could not say if this will last but I am just so THANKFUL for a little relief from the H--- we had been going through.No he is not well and never will be but for the time being, I can see parts of MY husband and I will try to make the most of this precious time. I pray this will continue
You know, I've had the same experience with my husband during these last two weeks as well. I'm sorry to admit that I wasn't on top of giving him the Aricept and Namenda since I often leave for work before he gets up and I don't always remember when I get home. So, he didn't have any meds for two weeks and I also saw an improvement in him. He actually wrote down a phone message for our son, taped it to our son's jacket and made sure he asked him if he saw it when he returned home. He also asked to go out with me a few times on different errands and seems a little more engaged. So right now, I'm not giving the meds. He's still in early stages and I hate to forego anything that might slow the progression, but he does seem a little better. What a strange and confounding disease!
Namenda could be one of the culprits. We have discussed this on other threads. When my husband tried it early 2010 he suffered: vision changes, confusion, exhaustion, felt like he was walking around in a fog. Doctor said to give it a couple months -we did and quit. Since it is approved for moderate to severe, I wonder if giving it too soon may make the side effects worse or is it just later on in the disease one doesn't know if it is the disease or drugs causing the changes. The doctor mentioned this last time possibly trying it again and the answer was a quick 'no'.
Don't forget, Aricept and Namenda and the other similar drugs were developed for AD. Since there still is no conclusive method to diagnose short of autopsy, I'm wondering if some who have adverse effects actually have another cause of their dementia--food for thought.
bak many of us have seen improvements after taking our spouses off the drugs. some just dont do as well on them and my DH was much improved without them but i found out only after many years using them. we feel fear of the unknown taking them off at times but in some cases it helps more than hinders. good to hear hes stabilizing.
marilyninMD I too wonder if maybe the DR.s are calling things Alz. because they do NOT know what else it is. Could be other types of brain damage masking itself as Alz. Guess there is no real way to tell for sure,we just have to use our judgement sometimes instead of the Drs.
Bak, I am so glad that you are having a better time now. You have had a bad run for a long time. In defense of Namenda, I saw an enormous change for the better in Gord. It only lasted a year but I was more than grateful for that year.
Always glad to hear good news....... Praying it will last as long as possible. I am so glad you can have an easier time cause it never last long enough..... hugs and prayers being sent....... rest while you can....
I am seeing the rapid decline of DW since Hospice has started giving her new Med. I was really only needing something to calm her down, It seems that the first Drug turned her into a Zommie and she was just looking at the floor all day. Then we switched a week ago and now her mental side is good, but she can no longer walk, or do anything with her body. It is really odd that the Hospice Dr never see her, just the nurse. I do not understand why they give all these powerful drugs, when all we are looking for is something to help with her anxiety.
in our case the hospice people need to ask upfront when signing on a new patient if we wish to continue with the patients personal dr OR switch to use of one of the hospice drs. i also dont know if the new rulings that make it mandatory that a hospice DOCTOR come to visit to recertify a patient may have made the use of personal drs arbitrary. i would clarify with the hospice nurse which they are relying on while your spouse is with hospice, your dr or theirs. if i was using my own dr i would ask that HIS office stay in touch with hospice on a regular basis with regards to meds and changes and request updates directly from the hospice RN who is assigned to spouse. otherwise there is a lot of passing the buck. we chose to use the hospice dr and it has been much easier and they are onboard with our wishes and work well to avoid confusions on treatments. also know that some drs do not wish to continue to be the primary dr when hospice is called in and ask that you use one of the hospice drs. what i do know is that to recertify for hospice its MANDATORY now that a real dr come visit the patient and sign off on the visit. this is new ruling that went into effect not long ago. i would question the hospice folks and get real answers just in case you have an emergency and need a dr asap. and if a hospice dr is assigned to your case then get the NAME of the dr andyou can call them directly! divvi