He used to sleep ten to twelve hours. Then multiple trips to bathroom at night. Then we started rivastigmine. First night no change....multiple trips to pee, but back to sleep. Next night a little difficulty falling asleep, only one interruption to pee, but seemed more awake earlier. Tonight difficulty getting to sleep. Woke about midnight to pee and now up and down already several times in the last hour and unable to go back to sleep. Very unusual for him so I am figuring a side effect. Dr doesn't have office hours on Friday so no point in trying to call tomorrow. Is this going to get better as his body adjusts or will this be a permanent side effect? Do I stop med tomorrow to see if it improves?
My wife has FTD and had a very bad reaction to the Exelon patch. I had to take it off of her within an hour, she was extremely anxious. She didn't have a dementia dx yet and Exelon and FTD don't mix well. So keep you eyes open for increased anxiety, it could be related to him not sleeping as much. I am not familiar with Exelon and Alz and it may be that he will adjust to it. If he seems generally OK I suggest keeping him on it and observing how he does. Does your doctor's office have an emergency or after-hours number?
Thank you for your advice. He is a neurologist and older. I'm going to check on the emergency number. I've also considered calling his PCP to see if he has experience with Alz patients. I haven't felt the neurologist has been particularly involved in Ron's care. Or certainly in my well being. He has never once asked if I have a support group or family or if I've considered what will happen in the future. He's never even listened to Ron's heart or taken his blood pressure! He usually asks the screening questions and not many at that. You know...what day is it? What year? What's your address? Add these numbers. Repeat these numbers. What are the similarities between a peach and an apple? And he actually used the word similarities and when Ron didn't understand what he was asking he never tried the word same. Of course Ron couldn't do much, just exactly like the way he couldn't a year ago. I wondered if he was just trying to prove to me that Ron was at a severe stage. He wasn't particularly interested in the rivastigmine study that I showed him which showed that administration in three doses a day was far more efficacious than the usual two a day. I'm sure if I hadn't brought printed documentation he wouldn't have agreed to write the script. He also did not go over any possible adverse reactions. In fact he got on the computer to look up what strength to prescribe. I guess he figured I would research adverse effects myself. Sigh! Yakima apparently isn't big enough to support any alzheimer specialists. The nearest centers are Seattle and Portland.
I took my husband off the Exelon patch after 6 years. He was not sleeping and pacing most of the night. They gave him a small dose of trazodone and he is sleeping better not great but better. He is in ALF and they told me I have to move him to long term care as soon as the insurance is approved. Dont know how this change will go. It is so unsettling. I am grateful that the nursing home will accept him.
Ragsgolf, your husband's neurologist sounds like the first neurologist my husband went to see. Disinterested and not helpful...didn't even give us the diagnosis he made. Just never told us until I asked the nurse and then it was "pre-senile dementia". What does that mean?! Told me to buy pepper spray and spray my husband in the face when he tried to hurt me (that was his version of keeping me safe) but immediately wrote to motor vehicle dept to have my husband's license suspended (I guess it was ok for dh to hurt me but not innocent strangers).
Do as I did...dump the idiot and find a better doctor if you can. You have enough to worry about without having a disinterested physician "treating" your husband. Many here have had great success using their pcp. You shouldn't have to research side effects and bring documentation...he should tell you and your husband about those.
Ragsgolf - did not realize you live in Yakima. I am only 60+ miles from you. My husband still has to go to Portland to see his VA neurologist. I had hoped he could get transferred to Spokane but am told he will have to stay with Portland or go to Seattle. I went to my first support group a couple weeks ago and a couple women praised a neuro here in Richland. I found out with a new bill for veterans, since his is 5 hours away, I might be able to go to the one at Kadlec. I looked and do not see any group in Yakima but maybe call one of the memory care facilities - they might have a support group. You could attend one meeting to see if they have recommendations for neurologist. Also see if his primary is comfortable or maybe there is gerontologist to treat it all.
His neurologist doesn't do anything more than give the MMSE, check his walking and reflexes, ask me what has been going on. The nurse does take the vitals. The VA requires you keep seeing the neurologist and PCP. His PA here at the VA claims he is experienced dealing with dementia - time will tell. Or I might switch him to the one that come highly recommended here in Richland if the VA will pay for it and the doctor will accept.
Thanks all. I don't know how a day went by without checking for your replies. Thank you to all for taking the time to reply.
I think that another side effect he is experiencing is anxiety. He has been so very preoccupied with the what ifs. I've never ever seen my husband cry until this week. Not just tears but gulping sobs. It has been heartbreaking. He is afraid of what will happen to him should I die. It is so hard for him to verbalize what he is feeling or worrying about so that makes it even harder to comfort him since I'm unsure just what his latest fear is. I have had such great hopes that the rivastigmine might help his cognitive levels. I hate to give up already.
Charlotte, Ron is also a vet. Vietnam-two tours. Another phone call for Monday is follow up at Walla Walla. I had seen there are some neurologists in Tricities. Might be worth exploring. I am definitely going to call his PCP and see if he has experience with Alz. I did attend a support group here in Yakima. They only meet once a month and they were all dealing with very elderly relatives. My husband is much younger and it wasn't a good fit. I do see a counselor almost weekly which has been a great help. I also have a social worker through Aging and Long Term Care; she is helping make my application to Medicaid. I also have applied for Aid and Attendance through the VA, but haven't gotten word yet.
After this last few days of sobbing it is very apparent that my DH is very much aware of where he is and what placement would mean. There is no way now that I can consider placing him in a facility. I'm determined to be more aggressive at finding ways to get help without resorting to placement. There is a possibility of an adult day care spot opening up at the senior center here which would be a big help if he will accept it.
Getting late and Ron seems to be asleep. I had better take advantage of this quiet and get to sleep myself. Thank you all for being there. It is such a comfort to get input from others who truly understand.