My father had a brain injury 5 years ago. My mother has had Vascular dementia since before my fathers TBI. We have 24 hour care for my mother and they also care for my father - just not as much required. He has been progressing into more and more dementia with memory loss, hallucinations, confusion, etc. We know he has dementia, but he does not know it. He does not want to be like my mother. His doctor set up an evaluation with a neuropsychologist that involves 3 days of appointments and a 5 hour "test". I read through it all and think it is excessive at this point. He would do poorly on all phases of the test and be diagnosed with dementia. No new news. My mother was diagnosed quickly by a neurologist in a 15 minute appointment. My father has had MRIs and CT scan, but all they say is there is evidence of a previous brain injury. The other concern is that my father will "give up" if he is diagnosed officially. He is such a proud man who was always in complete control of everything, very smart. I don't want him to get depressed and give up. He is already on nemenda, although I'm thinking of asking to try aricept. Of course, if we can help him I would like to. He is 86.
If the tests reveal that he has dementia probably of the XYZ kind, he will get worse. He will need more care than what you now have set up for your mother. How much more and when depends on his symptoms.
If he doesn't have the tests, it is likely that he will get worse. He will need more care than what you now have set up for your mother. How much more and when depends on his symptoms.
If you know he probably has XYZ dementia, you can look up the typical symptoms and deal with each one as it arises.
If you don't have a confirmation of dementia, you will deal with each symptom as it arises.
Some symptoms will be helped by certain drugs. These drugs were not specifically developed for dementia. For example, he may be prescribed an antidepressant or an anti-anxiety drug, regardless if you have an official diagnosis of dementia or not.
There may be some benefit to knowing if he has Lewy Body Dementia or Parkinson's Disease Dementia. This is because certain drugs may work differently with those diseases. Look up the symptoms of LBD and PDD. Do you have any reason to suspect Dad may have either of those? (Having hallucinations early in the disease is one sign.) Does the doctor suspect he might have either of those?
If Dad has the tests and you find out he has XYZ dementia, you can join a support group for people whose loved ones have XYZ. That can extremely helpful to you.
If you don't get a diagnosis, you can join a support group for people caring for their parents. That can be very helpful to you.
If Dad goes through the tests and gets an official diagnosis of some kind of dementia, he may be demoralized. He may give up. And/or he may be relieved to know there is a physical reason for the problems he has been having.
If Dad doesn't get an official diagnosis, he may be demoralized as he loses more and more of his cognitive abilities. He may give up. He may be frustrated by not knowing what is really going on with him.
If there were effective drugs or other treatments for specific types of dementia, that might add value to the testing. But there aren't.
I would have a nice sit-down chat with the doctor who recommended the testing, and ask what specific benefits are expected as a result of the tests. How will a treatment plan be different, depending on the outcome?
If you haven't read it already, I think you will find "Being Mortal: Medicine and What Matters in the End", by Atul Gawande. It addresses quality of life in its final stages.
Please come back and tell us what you do, and how it works out. We learn from each other.
For me it was worth doing, to rule out treatable causes and make some predictions. What does your dad WANT to do? What does he understand about his brain injury?
I just took the five-hour battery (in two sessions) because I was aware of some hitches in my own mental performance (I'm 75) and wanted to know as much as possible in order to plan for myself and also for handing off responsibilities like the supervision of my mother's care if necessary. The tests showed a deficit in what the neuropsychologist called "visual processing" or "vision processing." He recommended that, first, I see my opththalmologist to identify or rule out any condition that could be contributing to my below-average performance on that part of the tests. Depending on the results of that consultation, he said there are mental exercises that could help slow down any process of deterioration that's going on. So next week I'll be seeing the opththalmologist, while I continue seeing the neuropsychologist weekly.
Thank God my insurance (Medicare plus a Blue Cross supplement) is covering the cost. I'm relieved to have done this because whatever the results are, it will make some decisions easier.
I started becoming aware of changes many years ago. (He is also bi-polar.) My husband has always been a gentlemen! We decided to take him to his internist, after he became angry and forcibly pushed me and I almost fell. Up to this point in our 30 years of marriage, he had never laid a hand on me.
Also, we had workmen in the home and in the process he stated that they had stole his false teeth. Three days of hell ensued.
The internist suggested that we see a neurologist. We went and they set up an appointment for a four hour test to see if he had dementia and at what stage. The testing was time consuming and he was very tired after the sessions, but it was the best thing we could have done. It not only gave me reassurance that there was a problem, but made me accept that our life was about to change.
I have been able to get all the legal paperwork completed with my husbands help. And we will be leaving our beloved home for a care facility with all stages of care. I know the sooner we get into this setting, the better my husband will accept the changes that will take place in the years to come. My only great regret will be losing our beloved dog! I know this will affect my husband for some time, but I am willing to go through this, in exchange for his welfare. Everything else, in our life is workable.
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