Butte Home Health came out today. They have a Memory Loss Program and Medi-care pays for it. Rick received his assessement etc, it took forever. They will be changing his meds, trying to get the right mix of things to help with his sleeping, combativeness etc. After all was said and done, I asked the question I've been avoiding to ask a professional about. Mind you I had my own ideas, but somehow I really needed to know the answer from a medical stand point. My question, what stage is my husband at right now.....without hesitation I was told "7". He has started eating less and less over the past couple of weeks, his movements are slower than molassas and speach, it's all gibber jabber. I was told that the "hard" part is coming and coming fast. I feel numb. It was only 3 years ago this month that he was officially diagnoised with Early On Set Alzheimers, it's progressed so damn fast. If his eating continues as it is, things don't look so good. My god, what happened? I was told that Arcipet and Namanda aren't doing him any good and I should consider just stopping that medication all together. Has anyone else been told this? His previous doctor said not to stop, to continue, now I'm told it's doing nothing. All this is just too confusing.
Rae Ann, so sorry to hear this, no I haven't been there yet but I can imagine how you feel. Three years is really fast. Again, I'm not an expert but it seems to me that if he has reached stage 7 the AD meds are no longer working. (I'm considering stopping at stage 5). I hope others who have been where you are will be along to share their experiences.
Rae Ann, I can relate to your situation with extremly fast progression of EOAD. My wife was officially diagnosed 2 years ago at age 55 and is now past even doing a MMSE. The last Dr. visit after the nurse talked to Mar I saw her put the test in the back of the file. My wife also speaks jiberish, but not to me only to her imaginarry friends and enemies. As far as Meds I will continue with the exxalon and exiba until the end. Our Dr. filled out a form for nurses care for the insurance company and in the diagnosis box she stated EOAD terminal 1 to 2 years. She peed her pants today so I now will have that to deal with also. I also feel numb and can't sleep anymore. I would like to know what happened to. I'm sorry for just ranting but I think thats all we can do as we know there is no help.
Selwynfarmer: I guess we are both in the same boat. My husband was diagnoised in 2007 at the age of 53. Ranting and raving at this point is all we can do I guess. It's taken me 3 years to get any type of help from anyone and it took me moving to a different city and county. This program Butte Home Health has for memory loss is the only one in the US at this time and only covers 3 counties here. I guess I should be blessed that I found them. They have been so gracious in helping me not only for their program but for helping me find other resources I would never have known about. Respite being high on the list. Lord knows we all need a breat once in a while. They will be calling me again tomorrow, I'll let you know what they came up with.
This discussion has rather confirmed a suspicion I have. This last Monday, we had an appointment with our neurologist. It all went rather well, pleasant introductory chat to break the ice( our doc does that at every visit..chats about something of interest to DH and then moves on to more diagnostic things) and then, before the conclusion of our appointment, he said he wants DH to come in for a specialized computer test which he has. It is based on the tests neuropsychs give that take several hours. Our doctor went to the method as we have only 1 neuropsych in our area ( and doc has some patients who have been waiting 10 months for an appointment) and the others he would use are in UCSF and there are only 2 and they only work two aftenoons a week....he said there are not enough of these specialists anywhere. This test is nearly as good as what they would do but takes a little less time and is only a couple of points different. It has been useful in confirming DX as well as ferreting out some other issues..so we are on the books for that on the 13th July. He then went into all the eldercare lawyer needs and finally said I should start to look for Alzheimer's care facilities and he recommended 2 to start with. He said to it would be best to be on a waiting list than to suddenly face the need and be in a tight place and he added this would not be needed for a year or two. I took that as a quiet hint that things could be moving more quickly. My DH is fine with dressing ( though I have to nag about changing clothes) and will shower alone and do fine when he knows we are going out to an event. Otherwise he is sort of slobby whereas he used to be Mr. Spit and Polished. He reads, speaks completely and uses appropriate words. He does get disoriented and I don't trust him to make a sound decision alone.. I am familiar with the end stages as I lost my mom and favorite uncle to this disease. My mom forgot the words for boys and girls and when asked if she had children she said " Why yes, I have two blues and a pink".Later she reverted to speaking only German and then nonsense. But, bad as that stage was, somehow she knew we were there for her and she would nod and smile a little and she liked to be touched or have lotion put on her arms and legs. Anything soothing. And she liked soft music and to be spoken to as well. So something still clicked a little bit.It is the hardest stage of all...why? because WE are conflicted. We don't want to see them suffer the humiliation of this disease and somehow at the same time we don't want to lose them from our presence. It is a double edged sword.
I've been having an on-going battle (conversation) with the nursing home about the need for Namenda and Aricept which John has been on for several years. I don't understand the benefits for someone in the last stages with other health issues, too. I was told that they feel that the two meds also have other benefits, like helping to keep him manageable and non-combative....that they work with his other meds. I know nothing about that. Anyone else been told this? Insurance doesn't pay for any of it and I'm trying to find sensible ways to cut his expences.
Remember Rae Ann, the drugs only work for 50% or so of the people. Of course, we never know until you take them off. But it does sound like they have not helped your husband, so why keep giving him something that is doing no good? I know it is a hard decision to make - we keep hoping. But, for him, if he is that far along, why would you want to slow it down? What quality of life does he have?