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Spouse/Partner Caregiver Forum
Bad day today
quote:The loss of executive function
quote:Originally posted by howdy2u:I'm a little confused - when you say "isn't interested in refining the specific deficiencies and trying to treat those (executive functioning and some suggestion of frontal lobe involvement)", what treatment are you looking for?
quote:Originally posted by howdy2uI also suspect that because she is such an intelligent person and probably presents herself in a normal manner, you may be lulled into allowing her to participate in activities that are beyond her ability now (disability accommodations).I would not discuss the disability accommodations with your wife anymore and work on that project alone. If she asks, a general statement telling her it's taken care of may suffice.
quote:Originally posted by RHW:quote:The loss of executive function Please explain what you mean by this. Thanks.
quote:Originally posted by jfkoc:I walk a similar road with my husband. His lack of ability is very deceptive. I have to be ever mindful. I concentrate on expecting nothing. He can not, will never be able to recognize his illness. It will not matter how or how often it is explained to him. That is the reality of the situation that I must accept and move on. My job now is to make the most comfortable and happy life for us that I am able to.
quote:Originally posted by howdy2u:This may or may not have been mentioned to you before, but because her biggest deficit is executive functioning and not so much memory, she may fit into the Lewy Body Dementia category. You may want to do some reading at this site - in the Online Community section, Discussion Forums, one of the first sections is called Symptoms and Diagnosis. The diagnostic criteria for LBD is listed there.http://www.lbda.org/category/3438/symptoms.htm
quote:Originally posted by lurk:On a very basic note, yesterday I had to leave just as the banana bread was ready to come out of the oven. I was going to get it out, and then have my DH take it out of the pans. I had told him, "When the buzzer goes off, loosen the bread with the spatula and turn it onto the cloth." I showed him what I meant.But it wasn't finished baking when I should have left home. I called and arranged to be at my appointment five minutes later because he would not have been able to "Check it with a toothpick, and when the toothpick comes out clean, take it out of the oven, set the timer for 10 minutes, and then . . ." (proceed as above). His executive function would not have allowed him to do those tasks depending upon the toothpick coming out clean or not clean. Simplistic, but that's the explanation.
quote:Originally posted by jfkoc:You might ask yourself why it is important that your wife recognize her illness. What would it matter? Her recognition will not enable her to improve and she may already be well into the stage that she can NOT recognize it. The one person you went to to solve/discuss a problem is not there anymore.
quote:Originally posted by Starling:Actually you got your diagnosis. Unless you think she has FTD, you've got what you can get.
quote:Originally posted by StarlingOne thing that might help during the MCI period (which is what they always seem to call the early stages of dementia) is cognitive therapy. My husband got his a bit too late, but what little he managed to keep hold of had him reading and writing his name until early stage 6. So I'm a believer.
quote:Originally posted by howdy2u:You may find it difficult to get him to pin down a more specific diagnosis than "dementia, probable Alzheimer's type". Personally, I think they hesitate to go further with a diagnosis because then how it is treated becomes more important (LBD patients may not do well on AD meds, etc.).
quote:Originally posted by howdy2u:Also, having to wait 2-1/2 hours in the waiting room is just unacceptable - especially when you are dealing with someone with dementia. I don't know what to suggest to work around it, because even if you called prior to ask if he was running behind I don't think the staff would tell the truth.
quote:Originally posted by Neoh:quote:Originally posted by howdy2u:This may or may not have been mentioned to you before, but because her biggest deficit is executive functioning and not so much memory, she may fit into the Lewy Body Dementia category. You may want to do some reading at this site - in the Online Community section, Discussion Forums, one of the first sections is called Symptoms and Diagnosis. The diagnostic criteria for LBD is listed there.http://www.lbda.org/category/3438/symptoms.htm Thanks. It is one of the things that I have run across - and certainly one of the things I would hope the neurologist would think to evaluate based on the test results and symptoms being reported.When I have time, I will do more research raise it with the doc if appropriate - I haven't had time yet, he hasn't been energetic enough yet to bring it up on his own.
quote:Originally posted by RHW:This makes a lot of sense! My DH was a Marine Biologist and advanced level college and high school science teacher. My DH has extensive neuropsych testing planned for Sept. 1st. They say it could take as long as 6 hours. I am anxious to see the results. I am not telling him about it until the day of the test and then just to alert him that we will be going to the Dr. I have found that this works better for him.
quote:drug-wise, what Neoh is asking for is, I believe, far outside the realm of current knowledge.
quote:Originally posted by howdy2u:Neoh, I hope you get a more specific diagnosis - we were never able to. It was always termed as probable Alzheimer's before she was placed.After she was placed, the geriatric psychiatrist at the NH said he felt it was vascular dementia. At that point, it wasn't so important to me to know and we had taken her off all her AD meds anyway.
quote:Originally posted by Cathy J. M.Only other suggestions that comes to my mind (totally without any solid foundation) is to help your spouse develop some teaching materials, organizing content that she knows.Does she know mind-mapping techniques? In a way this seems like the opposite of the kind of logical organization you'd like her to amplify -- but oddly enough I think it might help. It's a much different approach to organizing info, compared with outlining -- and it might work better for her.
quote:Originally posted by RHW:Seems almost too simple to ask.... but why don't you change Doctors?
quote:Originally posted by Neoh: With my daughter's disease, there is a lot of talk in the much smaller community of patients and caregivers about designer treatment - tailoring the management of symptoms to her particular needs and responses .I'll have to go back and look, but it seemed to me that in response to earlier postings (or in other threads) there was a lot more of that flavor - the importance of finding a doctor who was willing in the early stages to find the best (likely at least somewhat individualized) way to extend the period of relatively high functionality .I suppose it may just be timing, with the announcement last week of another drug trial being terminated because the results were the opposite of what was hoped for - but the responses in this thread seem to me to have a much stronger feeling of "nothing works - just get used to it " than earlier threads.
quote:Originally posted by Starling:Noah it sounds to me like you are at the stage in this disease where you are looking for ways to "FIX" your wife. There is no cure. All dementias, no matter which one she has, are fatal. There are ways to make life more comfortable and slow down symptoms, and the two drugs the doctor is talking about are the ones that usually work, not just for memory loss, but for what you are calling executive functions and even physical functions.
quote:Originally posted by Iris L.:Welcome to my world. On our boards ("I have AD" and "I have AD under age 65") we talk all the time about the lack of dedicated treatment for dementia patients, other than the standard drug therapy, if patients even get that.Have you read the book "Still Alice?" It's a novel, but it's a realistic portrayal of the early symptoms and development of AD from the viewpoint of a university professor, like your LO.. . . The prognosis for persons with these subtle symptoms of impairment is variable. . . However, in a majority of persons with stage 3 symptoms, overt decline will occur, and clear symptoms of dementia will become manifest over intervals of approximately 2 to 4 years. Consequently, . . . the true duration of this stage, when it is a harbinger of subsequently manifest dementia, is probably approximately 7 years.