My DH was diagnosed with "probable senile dementia" in 2011. I think he has Alzheimer's, but he has refused any further doctor visits. He is still quite functional in many ways, but has virtually no short term memory, is very impulsive, unable to plan or organize, and is having increasing difficulties with comprehending language.
I first noticed that something was wrong back in 2007, so this has been going on for a very long time. I have read several books about dementia and have been reading this message board plus the Alz Assoc board for quite a while. So I've learned a lot about how I'm supposed to deal with him, but doing it all the time is another story. I just feel like I'm not cut out for this. We are in the process of selling our house to move to a continuing care retirement community, so the stress levels are especially high right now. I'm hoping I can express some of my anxieties and frustrations here, to people who "get it".
Orchid, everyone here 'gets it'. There will be much support from we who have lost our spouse and from those who are going through the various stages now. We are here for you.
Yes, stay in touch, Orchid. You will get support and good, common sense advice here that you won't find anywhere else. Unfortunately, everyone here "gets it" only too well.
Orchid: At the time of your husband's diagnosis, were other tests performed to rule out treatable conditions that may have the same symptoms, like B12 deficiency, thiamine deficiency, hypothyroidism? His workup should have included a common list of tests for differential diagnoses.
Welcome to my website. Your first sentence describing your husband sounds exactly like my husband was for the first few years before and after diagnosis. I started this website in 2007, because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience".
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Marche asked a good question whether test were done to rule out treatable conditions. The official diagnosis term for AD they give will most likely be 'dementia of the Alzheimer's type' since it can't be definitely diagnosed until after death. They are getting closer to finding ways for a definite diagnostic method which is good.
My husband is 67 diagnosed 7 years ago. As all her can say 'we now can see there were signs long before'. I do not push for anymore testing. He was diagnosed on his neuropsych test results and family history. He did have an CT scan and MRI which did show some shrinkage in the frontal lobe, but has not had any of those in the last 7 years. He went back for a second neuropsych testing the next year and walked out. He said he didn't need to be reminded he couldn't remember. That was when he was still doing good.
Orchid. Everyone here totally gets it. Please use this site to vent your frustrations. We are all at different places on the journey. Many of the spouses have passed. Myself my husband is currently in the Geriatric Psych hospital for med management as Hospice could not manage him. Some are just starting the journey. Just try to take care of yourself although I know how difficult that can be when you are the main caregiver. One thing that has helped me is someone once told me we cannot save them, but we can save ourselves. In the beginning I think most people try to save them which is a killer. Dementia is a terminal condition.
Thank you all so much for your warm welcome, advice and support. DH did have a complete work-up in 2011, including tests for thyroid, B12 deficiency, etc., a CT scan, and neuropsych testing. After all the tests, the neurologist said it was "hardening of the arteries", not Alzheimer's. He said DH's condition would progress, but not as fast or as far as Alzheimer's. His explanation didn't make sense to me--I couldn't (and still don't) understand how he could tell the difference between early stage Alzheimer's and this generic dementia.
DH refused to go back for follow-up the next year, since there was nothing wrong with him. In 2013, I convinced him to go to a major university medical center for evaluation to prove that he was fine. I got all the necessary paper work done, but DH changed his mind before we got the appt. scheduled. He had decided they would listen to me and conclude that he had dementia in spite of the fact that he was fine and that it was just my "paranoia" that was making me think he had a problem.
I entered some info about us on the "new member" thread, but will just say here that he is 73, I'm 66, and we've been married 42 years. He has 3 sons from his first marriage. They are supportive, but live too far away to provide any day -to-day help.