Expert: Mary Gordon - 9/2/2010

Question
Mary, I have been taking my Husband to a Neurologist since March after our General MD. referred us, we have done a CAT scan, MRI, EEG, bloodwork twice to check for thyroid, vitamin B deficency, memory test (32 questions he answered 15 correctly) they did a test having him walk and a test having him try to pick up a paper and fold it according to instructions. The Doctor has also done a sleep study. Will the Neurologist ever come out and say why the brain is not functioning properly? The Neurologist has prescribed Namenda and my Husband is on the third week of the starter pack and it seems to help a little, but he is still confused, mixes up his words (washmouth instead of mouthwash), drives terrible, gets mad easily, accuses me of making him sick, loses things, has trouble remembering how to write,and so forth. How long does it take for them to give a diagnosis? I am so frustrated, my Husband is constantly mad at me, he blames me for everything, I just want some answers. When I read the stages of Alzheimers on your page I feel he is between 4, 5 and 6, at the end of the day he is generally worse then in the middle of the day. I realize the doctor is trying to rule out everything including depression, sleep deprevation, and deficiencies, but honestly how long does it really take. Thank you for your help and expertise, I feel I have no where to turn to ask questions.

Answer
Hi Diane, I know how difficult this is, and how much anxiety you must be feeling. However, his doctor is doing a very thorough job of ruling out everything it might be, and that is actually a very good thing. There are many causes of cognitive impairment and some are treatable and even reversable. It is important to know what is going on since some forms of dementia are actually made worse by the treatments that can improve other forms of dementia. Different causes of dementia can also progress in different ways, and having an idea what you are dealing can help you make good plans for the future by knowing what is likely to happen next in terms of problems and behaviors and also longer term prognosis.

It sounds to me that although the neurologist is not saying the word yet, he thinks it is likely Alzheimer's. Namenda, also known as memantine, is an Alzheimer's drug, and he wouldn't be prescribing it if that was not his working hypothesis. Don't be afraid to be direct with the neurologist. At this point, he should tell you what he thinks - you need some answers. If you have a signed power of attorney for medical decisions for your husband, or a written release from him to allow you to talk directly to the doctor, call the office and ask to talk to him.

If this is Alzheimer's, ask him about combination therapy. Namenda is usually combined with Aricept. The two drugs together seem to work better together than namenda or aricept alone.

What drugs like Namenda or Aricept do is not a cure. They won't reverse the damage already done, nor will they stop the progress. What they do is slow down the progress of the illness in some people for a while, and give the person a bit of a boost in terms of function. This means they stay functional longer, improving quality of life, and also making them somewhat easier to look after for a caregiver.  Neither drug works for everyone, but they do help many people. Many caregivers find that they think the medication is not doing anything, but when the person stops taking either drug, they notice a marked decline.

The neurologist should have told you what to expect. Namenda will not restore him to where he was, so don't be disappointed that he is still confused.

Here is a really article that will help you understand what is happening to your husband
http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...
I'd also suggest buying a copy of the 36 Hour Day by Mace and Rabin. Hands down the best book of it's kind. I wore out our copy when I was looking after my mother in law.
http://www.amazon.com/36-Hour-Day-Alzheimer-Disease-Dementias/dp/0801885094/ref=...

If you have not already done so, I would very strongly urge you see a good lawyer as soon as possible with a specialty in estate and insurance planning, and medicaid/medicare if you are in the US. You need advice and assistance. You need current powers of attorney for both financial and medical decisions, and wills - for BOTH of you. Your husband is very unlikely to be able to sign papers much longer, and you need to make sure everything is in order. You need to understand all the insurance rules where you live, as if this is what I think it is, you will not be able to look after him alone at home indefinitely. The rules are very complex and convoluted and you can conserve assets for your own future with good planning and advice. You also need to understand all of it, and get all your finances organized to make them easy for you to manage.

I know you don't want to think about this stuff, but you need to protect yourself from what is coming in terms of caregiving. You also will want to think about your personal situation in terms of where you live and access to family help and support. Your husband will not be driving (more about that in a minute). He will not be steady on his feet, and eventually he will not be walking well and will end up in a wheelchair. Can you cope with that in your current home? If it is multi-level, no bathroom on the main floor etc. it may be prudent to think about alterations or a move. You are also going to need help. Are you close to relatives and friends who can assist? Do you have the support of a faith community? Are there services in your area. Are you close to stores?

As a side note, it is common for people with cognitive impairments to seem worse when they are tired, stressed, hungry, ill. They are holding on with their fingernails to many abilities so coping is stressful. By the end of the day, they can be worn out and at the end of their ropes. Quite often, caregivers find that it is a good idea to schedule challenging activities for times of the day when the person is at their best (i.e. if bathing is becoming difficult, try having their bath when they are rested and fed, perhaps early in the day).

I know this is a difficult subject but I think you realize that your husband should not be driving. That the doctor has not discussed that with you already borders on criminally irresponsible. A score of 15 on the MMSE means he is quite impaired. Cognitive impairment means impairment on many fronts, not just language and memory. His judgement, emotional control, ability to reason, reaction time, muscular control, depth perception, visual accuity - all these things are impaired, and there are all things you need to drive safely. It isn't just about him. It's about protecting other people on the roads and sidewalks. You would never forgive yourself if he hurt someone because he misjudged a distance, forgot a traffic rule, or panicked in an emergency. See if the doctor can assist. In many locations, the doctor has a legal responsiblility to report him to the licensing authority.

I'm thinking of you. If there is anything I can help with or you have other questions or just want to vent, don't hesitate to contact me. Hang in there. Tell the doctor you need a straight answer - and see that lawyer.

Mary