Oregongirl Asked May 2015
I am not sure if my partner has started Alzheimer's or dementia. Any advice?
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Alzheimer's...I need answers...Are there any areas of discussion on this? He is sort of "out there"... He is forgetting things and imagining things. I don't want to have him live anywhere but at home. Do people stay at home with this disease? Can it be done? What help should I get? Can I do it by myself? I have so many questions.
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I read that your husband has Parkinson's. The kind of dementia most often associated with that is Lewy Body Dementia. Parkinson's with LBD is called Parkinson's with Dementia. Whew! The names can be confusing. I'm just telling you all this so you'll be able to look for information about Lewy Body Dementia. An excellent resource is the Lewy Body Dementia Association's website.
It is kind of important to get a good diagnosis for the particular kind of dementia (if he has dementia), especially with Parkinson's. That can help fine-tune the treatment plan. There has to be a balance so that medication for the dementia don't make the Parkinson's symptoms worse.
My husband had LBD and was able to stay at home with it throughout the ten-year journey. (He died on hospice in our bedroom.) Many others in my caregiver support group had to place their loved ones in a care center toward the end. It depends on exactly what symptoms appear, how fast they progress, how well the various treatment plans work, and if the patient is prone to violence.
But we are getting the cart before the horse. First he needs a medical assessment. Write down all the "odd" things you are noticing. Some important questions are 1) Does he seem to be having hallucinations? 2) Is he noticably better on some day and worse on others? Or do his cognitive problems seem stable? 3) Does he have vivid dreams and does he seem to be acting them out at night?
Share your observations with the doctor who treats his Parkinson's. Your partner may be referred for further testing.
Come back and share what you learn. You'll get lots of support and suggestions here. But first things first. Get a medical evaluation.
Research to see if you do have an Alzheimers Assn. in your area, then find out if they offer a class titled Creating Confident Caregivers - The Savvy Caregiver. It's free and well worth the investment of time.
Beyond the myriad issues we discussed, one was progress in the diagnosis. This is a good article, somewhat technical on that aspect: http://www.alz.org/research/science/earlier_alzheimers_diagnosis.asp
It was the question of proteins in cerebrospinal fluid that was part of the discussion in the class. As I understand it, this was significant because for some time diagnosis was only confirmed by post death examination.
As to staying at home, it depends on you, what resources you have, what support, your own ability, progression of the disease, etc. There are different stages; it would help to review them so that you know what will occur.
But apparently there's no diagnosis yet for your partner, and there are many forms of dementia. One of my relatives had Lowey Body Dementia and was coherent most of the time, but once a UTI occurred the hallucinations accelerated until the UTI was controlled or cured.
I know of a situation in which a woman cared for her husband with Alzheimers the entire time, all at home, and with professional help, until he died. He was entirely bedridden and mentally incapacitated the last 3 years. I don't think that's something I could handle, but some people can.
So first I would start making notes on the forgetful episodes and other changing characteristics, then see a neurologist for diagnosis. If it's a different kind of dementia, research that.