Hi I am new to this forum. I have been reading posts for a few weeks now. I am 57 and my hubby of 40 years is 62. I have to say I have noticed for quite a few years now that he had a few memory problems but definitely visual spatial difficulties. He was seen by a neurologist last year who administered tests and did a brain MRI. He didn't do well on the tests but was told he didn't have dementia yet but they couldn't say for sure if he would develop it in the future. His MRI was normal. Today we went back. His test results were worse than last year and he is booked for an eeg and another test to check blood flow to the brain. My husband seems to accept he had a problem. His drivers license was taken off him today but quite frankly he hasn't driven for a year as he knew he couldn't. I'm scared. Scared for our future. Scared to see the man I love deteriorate before my eyes. Right now his deficits appear to be mild. He can't tell the time on an analog clock. Cannot say a number. ie 1,000.00 is one hundred thousand.I could go on. I am sure we will get a diagnosis soon . I am so thankful I have found this site. Any way I just wanted to introduce myself. I have a feeling I will be visiting regularly. I just wish I could stop crying. ( never in front of him)
Julie55, welcome. I am sorry that you have to join us here on this board, but I am glad that you found it. I was in total despair before I found this site, but so glad I did - everyone is so helpful and supportive, and if you need to cry or vent, this is a good place to do it. {{{{{hugs}}}}} to you!
Julie55, welcome. I am very sorry that you are a member however, you have found a safe haven of support, information, and lots of hugs. There is a wealth of information here. We are a friendly group and will never judge you. Come here often ...we are all ages and our spouses are at different stages. Help and support is always available. ((hugs))
It is wonderful that you found this forum. You will find lots of veterans here who will share lots of helpful suggestions and tips. I am glad the doctors are doing further testing on your DH and let's hope for a result that is something that can be fixed vs any kind of dementia. Try to stay calm and focused and keep us posted on how you are doing and what the doctors say.
I am so sorry that you are dealing with this. Glad you found this site. I hope you get answers soon. Welcome, they are great here. Most of the time I just come and read.
I'm afraid that all sounds familiar. It was the EEG and the range of a particular frequency that the neurologist so chattily explained showing me on the printouts that left no doubt in his mind. The poor man was clueless that his scientific insights were devastating.
From that point I looked up at the heavens and asked for two years for her and we did get two years where I made sure AD remained in the background. I'm glad we had that. However, I hope your experiences are coincidental and that the two of you do not come down this road.
welcome Julie55. its always very heartbreaking to see new members who need the support and guidance here at this website. but if you are in the throws of caring for a spouse with dementia of any sorts its a wonderful caring solid group of folks who care what we have to deal with on a daily basis. its an ongoing support from beginning thru the ends. its good to hear newcomers are able to find their way to help. having others who understand is crucial.
Welcome to my website. 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.
Julie, you have a double whammy in that your husband is so young. If it is Alzheimer's Disease, he would come under the category of EOAD ( Early Onset Alzheimer's Disease), which is now often called Younger Onset Alzheimer's Disease. This comes with its own set of challenges - loss of work, insurance, difficulty finding correct diagnosis, etc. On the home page - www.thealzheimerspouse.com - on the left side, there are sections on EOAD, including an excellent guide to Early Dementia.
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.
Julie55, about the crying - I know exactly what you mean. I'm on the verge of tears all the time but try not to cry when he's around. There are so many things to deal with and take care of in addition to watching the love of your life constantly declining. However, you will find so much caring and understanding here, it will make things easier for you. I've been here for over 5 years and I actually don't think I could have made it without all the information, advice and love we share.
Julie55 We have much in common. DW was 17, me 19 when we married 53 years ago. Onset was quite as you described as were all the initial test results. Once we had a definitive Dx, 7 years ago, DW enrolled in an expirmental drug test. The 8 mos. of the rigors of the test led to my devouring every written word on AD. I was sure somewhere there in the literature was a cure. Being a former R&D pharmacist I was sure I'd uncover something.
Gradually the realization that DW had an Incurable disease became my reality( acceptance) and my focus became how to cope with what was our current reality and the future.
We had a second annual visit with the Neuro and I concluded henceforth there was no need for DW to endure the hours of testing and the overwhelming depression resulting from her inability to respond to or carry out the tests appropriatly. The Neuro told me what was all too apparent, she was declining. (what I described as a piercing glimpse into the obvious).
We are fortunate our PCP we've been seeing since moving to FL in 2001. He is an Internist/Gerientolgist and has been just great in managing/controlling each new behavior as it appeared in s very compassioniate, responsive fashion.
What Stage she was at ceased to be of any relevance. Keeping her comfortable, safe and happy has been all that counted. In short, you're at the start of a long journey. stay focused on productive efforts, crying I can relate to. the sadness and depression just drains us of our ability to carry out our role of caregiver. When it overwhelms , switch gears, my cure is put on some fun R&R and blast it. DW loves it, she can no longer speak, but with The Eagles, Santana, The Dead, etc. blasting the mood in changes instantly.
So here we are 7 years later, the highs and lows, the laughs and moments if terror (wandering) too many to mention, but I'm still capable of saying I'm fortunate, it could be much worse
I do feel a need to comment on your statement; "I am sure we will get a diagnosis soon."
My wife's symptoms began at age 55 and she died at age 63 (however not from AD-long story for another time)
At our first visit with the PCP I described the symptoms and WITHOUT FURTHER TESTING she 'diagnosed' AD and prescribed Aricept. There was one CT done at my insistence and no EEG or other testing.
Not willing to accept such a caviler conclusion I took my wife to a major university geriatric neuro-psyc program and after 3 days of 'talk testing' we had a family meeting and we were told "We can't exactly say what is wrong with her"(!) "We SUSPECT AD but nobody can be sure until an autopsy" (!)
I am an RN myself and I was surprised at my reaction. I WANTED SOMEBODY TO CLEARLY SAY WHAT WAS WRONG. Truly, I knew in my heart what was wrong and I could see the symptoms myself, but I wanted someone to say it. Even today I dont know why it was so important to hear somebody say it, but I did.
We changed doctors and they were happy to accept MY conclusions and they were happy to prescribe whatever medications I wanted. (meds for behavioral control is something you will learn) but no further testing was ever done. (and it was not really needed)
Only at her autopsy did I finally get a pathologist to say un-categorically that she had the plaques and tangles of AD.
I mention all this because in this disease, firm conclusions and scientific proof of exactly what is wrong is not always as easy to acquire as for diseases such as cancer. Learning to live with making diagnoses and drawing conclusions based on YOUR observations and findings, is a unspoken part of the journey. Your expertise will commonly trump the doctor's.
Welcome Julie55! It would be nice if none of us needed to be here but we do. Since we do this is a wonderful place you and many of us have found. They are all on your side and with you every step of the way. Being scared and crying is normal so anytime you want...we have big shoulders and lots of ears!!! Also big hearts!
M-mman Thank you for putting this down so well. We went though the same things and were told that the autopsy was the only way for a definite diagnosis. All of my DH's symptoms were dead on as to what they have suspected and his testing shows a definite decline since last year. There will be no more testing and as I watch the changes that are taking place I know in my heart what it is and having someone give me a definite diagnosis is not going to make it better. He has what he has and that is it. He has been upset because he feels he has no purpose anymore so we solved that to some extent by giving his the responsibility of doing the dishes. His job an no else's and he was elated. I now have to find lots of little things for him to do like pick up the fallen leaves off the lawn and such. This has made he very happy and now it is just a matter of waiting until he goes into LTC in the next month or so. Please keep sharing your experiences as they sure help