I am the spouse of a person with AD and need some of you to help me. My DH has been diagnosed with "dementia of unknown origin" or "multi-factorial dementia." He is 51. He has responded positively to the combination of Aricept and Namenda (does this confirm he has AD?). Here's what's driving me nuts: my DH's symptoms keep going all over the board, the doctors can't decide what he actually has (and we have been to SO many), and I need someone to validate that what I am seeing and feeling are ... not crazy. When I look at the symptoms for AD, I see my DH in almost all of them. Yet, people who don't know him, don't really see that he is not normal. He is quiet and reserved and they think that is his normal personality, but it is definitely not his personality. His memory is all over the board. He remembers some things and not others and there's no pattern - other than he forgets things that he would NEVER have forgotten 2 years ago - things that you and I (and most people) would not forget. And, then, he remembers something random that I don't (and most often wouldn't) remember.
I discovered tonight that he has a rash on both of his feet. He thinks he's taking a shower every day and he's not. I am having to remind him to take a shower. Now, with the appearance of this rash (which I will need to examine closely tomorrow morning), I need to make sure he's not only taking a shower more often but is also putting something on his feet to heal them.
The thing is that he's OK as a dad, friend, etc. Just not really OK as a husband. We don't have an intimate relationship anymore. To be frank, I am scared to try to make love. The last time I tried to have an intimate moment, he got distracted in the middle and just stopped. The last time we made love, it was awkward and he almost didn't climax. Sorry to be so personal, but who is EVER going to understand if this group doesn't understand? If I try again, I am not sure I can handle it if I can't get him to climax - what do I tell him? I am hoping that he forgets!
Also, I have been thinking about a vacation and I am not sure what to do. Should I plan to go soon, while he's better (as in, the next 6 months) or am I looking at something with a little more latitude (as in, the next 18 months).
Last year, he declined so fast. Then, when we put him on the Aricept with Namenda (the Aricept without the Namenda didn't help as much), he seemed to get some of his faculties back. His Central Sleep Apnea also improved once the Namenda had kicked in (down from 33 episodes an hour to 8 episodes an hour - on the V-PAP). He had gotten down to where he could not remember anything for 10 minutes. Now, as noted above, his memory is splotchy - remembers some things, but not others. He had gotten where he could remember 1-2 of the 3 objects, but he's back down to not remembering any of the 3. He had gotten where he could count backwards all 5 levels, but he's already down to 2 correct out of 5.
Any thoughts, suggestions, helpful tips, words of wisdom, or simple understanding? I feel very alone out here.
Sharan - you are not alone any longer. Everything you write is typical of AD--or perhaps another dementia--it is very hard to diagnose these conditions, but you are not crazy. Memory is often all over the place, remember this, remember that & then it's all mixed up again. Most people will not see what you see because you are w/him 24/7 & know him best, they will tell you they don't see anything wrong, but if you see it--it's there. The sex situation is also very common, altho it can take different scenarios, but it is a problem for most marrieds. There has been many discussions about such intimate moments. Others will come along with more to tell you & welcome you, I have to leave now, but I did not want you to spend the rest of the night thinking something was wrong with you--you are going to be OK--now that you are here. You'll hear much more in the morning from others. Try to sleep.
We are glad you found us. The greatest stage of confusion for us caregivers seems to exist right after the diagnosis (DX), I know I was really confused and frantic during these early stages and made a lot of assumptions many of which proved to be wrong. Now seven years later I still am not sure what my DW is really going through. We have a DX of Vascular Dementia / possible AD. The combination of Aricept and Namenda are very commonly prescribed and do work well for many AD patients. Both of these drugs work differently and help to extend the amount of time of our loved ones can function in society, they will help slow down the progression of Dementia/AD in many AD patients. They do not work for all patients.
If your DH is 51 years old he may be suffering from Early Onset Dementia (EOD), there are some here on the forum who have a lot of experience with this type of Dementia and can help you as you travel this road. There is a lot of good help and experience available here, I'm sure as the day progresses they will check in and will be able to share their experiences with you, I know they will be a source of support and will be able to offer you good advice.
There are other drugs that Neurologist's commonly prescribe to control some of the behaviors associated with AD. Many of the people our loved ones come in contact with, inculding our own families, do not see the personality changes we spouses see on an hour to hour basis. We spend the most time with them, they become almost totally dependent on us and we become the target of their behaviors. This is all part of the disease.
This is a very difficult road we are traveling, you are not alone.
Welcome to my website. You are not crazy. You are not alone. We have all been exactly where you are. Especially me. People still think I'm the crazy one. My husband is still so socially functional, and so good at hiding it from others, that anyone who isn't with him for at least 3 days straight think I'm a whining witch (witch with a "b").
Please log onto the home page of this website, and look at all the resources on the left side. I would suggest starting with "Newly Diagnosed/New to this website". Then read the section EOAD - it is the one with the star. Most doctors are reluctant to diagnosis Alzheimer's Disease in someone so young. There are videos and a lot of information in that section. Then read the section "Understanding the Dementia Experience." When you get a chance, click on the "previous blog" section and scroll through the topics. There will be many you can relate to, including at least 3 on sex and intimacy.
Go to the top of this board, and do a search for topics on "sex". I don't know how many discussions there are, but it's quite a few. Everything that is concerning you about sex and MUCH MORE has been discussed here. We treat the subject seriously and with dignity. Spouses understand.
Please be sure to check in on the home page every day, as Daily News and blogs are updated regularly.
Again, welcome. I know many others will be along to help and welcome you.
Yup, your husband sounds like a pretty average mid-stage dementia patient. And it isn't unusual for outsiders not to realize anything is wrong. I think most of the people at our favorite diner, where we eat at least a couple of times a week, have not clue that anything is wrong, except the ones who notice that I do all of the ordering and I'm the one who pays the bill. Needing to be reminded to take a shower is pretty normal at the stage you describe.
On the other hand, a neighbor who my husband spends a lot of time with, did notice and let me know it when I first went public with what was wrong with him. They knew. They understood. And it was still OK with them when he came around even as the disease got worse.
It is OK to discuss your sexual issues here. We've all done it before and there are multiple threads about those issues. Just about everyone who has posted has felt the same way you felt. At some point sex will simply go away. When it did in my house it was a relief for me. And possibly for him as well since it wasn't going well for either of us the last few times. There is also a thread about taking care of ourselves sexually, so you see no one here is shocked that there are issues or that you talked to us about them.
There are some specific issues for early onset, but most of the issues aren't all that different no matter if the patient is 45 or 85.
About the vacation, if he is going along with you, do it sooner rather than later. There comes a time, and it can come very quickly, where traveling stops. They can't handle it and you can't handle the issues. In my husband's case it was very quick. In November 2007 he drove from Pennsylvania to New York City for Thanksgiving at my daughter's house (a two hour trip) and needed no help navigating on that trip we had made many times. In May 2008 he no longer could drive. A month or two later it was obvious that he no longer could do any traveling. In June 2008 I stopped leaving him alone for more than an hour or two at most. He is still safe alone, but he doesn't like me to be gone.
On the other hand, since July 2008 he has been on a long plateau. No big changes. Just an up and down of abilities going back and forth over the range. Good days mostly with a few bad ones here and there with no pattern I can figure out. But traveling is totally gone.
I'm sorry you're having such a long, hard struggle. Way back when, you told us your husband has had the same neurologist since January 2006 ... are you still seeing the same doctor?
I just posted under
The DIAGNOSIS - Who is qualified to make one?
for you about the research centers that are qualified to make a diagnosis for an early-onset dementia. Maybe you could finally get answers to your questions at one of those. Neuro's who are not specialists in dementia syndromes just don't have enough expertise to understand all of the different things that can cause these symptoms.
What you've told us here is pretty typical for the most common disorders that can cause dementia symptoms, but some of the symptoms you've described in other posts are more unusual. The tremors and hallucinations, for example, are consistent with Lewy body dementia.
Sharon, the others have said most of what I would add. My wife is probably in stage 6. We used to travel a lot - 1-2 major trips a year. Our last such trip was 2 years ago when I found I was having trouble getting her to use the public rest rooms properly. Last fall we took a bus trip with friends, so the other women helped her with the rest room issues. However, she is no longer able to do even a simple bus trip. My advice - if your DH is up to a trip now - Take it. He probably won't remember much, if anything, but you will have fond memories. Also, be sure to take lots of pictures. This may help him remember the trip. The biggest problems on travelling involve the airports, etc. Going through security was a problem for me since DW would go right through, while I would be held out for wanding (due to artificial knees and shoulder). It was hard for me to keep an eye on her while being checked. A letter from your doctor to the security people could help in allowing him to stay with you (or you with him). You should also check with his doctor regarding whether or not he should continue to drive. My wife passed the state driving test (ordered because her doctor reported dementia), but not long after voluntarily gave up driving.
My DH gave up driving (at my insistence) after he got into an accident in which he cut across the street in front of an oncoming car that should have been visible for 1/2 to 3/4 of a mile. The person was not seriously injured - Thank God! I am thinking of bringing my son and his wife with us. That would make it easier. I do, however, want to make sure we are not going to a place that would create an uncomfortable position because it is "romantic" and romance is not really like it was.
Sharan - when I started really researching in January, I found that people with sleep apnea are one of those at a greater risk of vascular dementia. Due to the stops in breathing the blood vessels in the brain may be slowly destroyed. My son has been tested by the VA, they say he has it but he has been fighting to get treatment. I told him he needs to due to the vascular damage that can occur. Is your husband on a mask or mouthguard for the sleep apnea?
As for the sex - as others said, it is something we all deal with. Memory - my husband was diagnosed amnesic MCI, but he will surprise at times with him remembering what was recently said or done. He does work hard on word searches. He now regrets all the years I told him he needed to work his brain more. Not that this would be avoided, but it never hurts.
I do hope you can get a more definitive answer but then, you may never. This is such an ugly, variable disease.
My DH has central sleep apnea (brain misunderstands signals and thinks he doesn't need to breath). He uses a full face mask. He started having fewer hourly events when the Namenda & Aricept had been working together for over a month. His memory had improved some with the combination - for a while, he actually could remember 1 of 3 words and could count backward by 7s to 5 levels. Now, he's back to not remembering any of the 3 words and can only get 2 levels (and then with a lot of struggling).
I did find UTSW program and am taking my DH on Friday! Yeah!!!
Actually, the woman I spoke with asked some interesting questions about my DH. Specifically, she suggested that we should look into FTD. My DH's main damage is with executive dysfunction and memory impairment (unable to remember or learn new information). She mentioned the personality change could be the apathy (I have been focusing on the fact that he is not angry or doing a lot of odd behaviors, but he IS very quiet and not outgoing - not himself). So ... I am hoping they can help.
I only have one comment and one bit of advice: 1. You are definitely not crazy! and 2. You know what you are seeing and what you are hearing. Don't let yourself be disuaded or second-guess yourself.
I'm so sorry you are going through this--especially at such a young age. But you are in an excellent place. You will receive lots of support and help here. Blessings!
Hi Sharan, My DH is 61 and I had noticed symptoms for at least 5 yrs, beginning with a change in INTIMACY! After many years of wondering what was wrong with me, our marriage, communication, etc, I began to suspect AD. Last week, after a PET Scan and months of testing, we finally got the dx of FTD. There are many websites that describe the symptoms. His symptoms are all over the place. He is beginning to forget to shower, today I am going to make my first attempt to suggest he shower. This is the guy who would shower twice a day on many days!!! We can no longer sleep together because he has become violent in his sleep. Oh how I miss him at night. We are waiting for an appt for a Sleep Study. So SEE, you are not alone or crazy. You have us, and yes sometimes we cry, bitch and moan, but we also laugh and support each other. This site is the best thing that has come into my life in a very long time. Welcome!
We still have not had a PET scan - that's probably the only test we haven't had. I have not been able to sleep with my DH for over 6 months (or is it 9 months?). It was hard at first, but he moves so much and makes so much noise that I had to make the move to be able to function. We had the first sleep study in November 2007. In the Summer of 2008, we learned that he has Central Sleep Apnea (the rare kind) with some Obstructive Sleep Apnea (the most common kind). With Central Sleep Apnea, the brain thinks the patient has enough oxygen and doesn't need to breath so it doesn't tell the patient to breath. Scary! Well, my DH was having about 30 episodes an hour (yes ... that's about 1 every 2 minutes) until December 2008, when the Namenda and Aricept combination reached their peak efficacy. I don't know what exactly that means except that it supports the positive changes I have observed in his response to the combination effect of Namenda and Aricept. He has, however, already passed the peak (I believe) in recovering whatever the combination will give him. He had gotten to where he could count backwards from 100 by 7s without difficulty (for about a week!) and could remember 1 of the 3 words. Now, he has difficulty getting 2/5 of the numbers counting backward right and he can't remember any of the words. These are the 2 main areas where he has shown deficiencies on the Mini-Mental. He also can't spell WORLD backward. The key about the counting is that my DH was an engineer before August 2005! So, counting and math should be easy smeezy!
I believe having a name will help - especially if it means that my DH could get into some research programs. My DH is only 51 and is otherwise in good health (now). Maybe he could help find a cure by being a "good" test subject - he is healthy enough to last long enough in a research study to MAYBE help see the long term effects of some medicines. Even if it doesn't help him, maybe it will help others. That would help ease the pain - for both of us. My DH is a very loving, kind, generous man. He would be glad if he could help find a cure for this horrible disease. Believe it or not, this is my main reason for wanting to get a diagnosis - that and my peace of mind.
Having a name (diagnosis) would make it easier to apply for certain financial things like Social Security Disability. My husband has FTD and as this disease was recently added to a list of rare diseases by Social Security, my husband was approved for Social Security Disability in 2 months. I believe even a diagnosis of Alzheimers will get you SSDI, especially if the neuropsych testing showed great deficits. Having doctors on board for SSDI helps greatly too. I saw you have an appointment at a new doctor, I hope they are much more helpful to you. We have been lucky to have doctors who have listened and not gone just by my husband's age or the fact that there is no family history of any type of dementia. He was diagnosed last summer at the age of 58.