Dad lives with me. He is 87 and showing signs of Alzheimers/ dementia/ sundowners. His PC doc said he seemed fine when my dad was able to answer 2 questions - his full name and date of birth. Surely there is more to a diagnosis than this! We see him daily and he is having memory, mood, and personality disorders. I understand early diagnosis is critical as there are medications to slow the progress down of this disease. But he is in "showtime" mode when he visits the doctor. You'd think he never had an issue. Doctor looked at me like I was a horrible person for suggesting there was anything wrong! I have tried everything in my power to keep him at home and out of a memory care center. I just need a diagnosis so he can get on meds before this disease progresses. Any advice?
I agree with Geaton777 - two questions by a PC is simply not enough. Your dad needs an extensive exam for many reasons. My mom had an MMSE (Mini Mental State Exam) back in 2014 given by a Neurologist and again a couple of years ago by hospice. I know someone who went to a local hospital and had a specialist do a comprehensive exam that was about two hours in length. You do need a diagnosis because you should know what "type" of dementia he actually has. Alzheimer's is just one type and the most common but, there are many others. You are wise to be seeking answers now because it's true that a medication is best given to them in the early stages to slow down the progression. However, please remember that this disease ALWAYS progresses. So in my mom's situation she is no longer in the early stages and was recently taken off her medication. Also, something to keep in mind that as family/caregivers we usually don't recognize it right away and often they have had it for a couple of years. It truly amazes me how they can appear clever, "with it" and fool us as well as others. You even said your dad is in "showtime" mode when he sees his doctor which proves that point.
You have your hands full with taking care of two family members in your home while having your own family even though your adult children no longer live with you (if I remember correctly from your profile). I admire you for that. I could not do that even if I wanted to because I simply don't have the tools to take care of my mom properly. She started in AL back in 2015 and after getting COVID-19 she is now in a MC unit at a different facility where she can get more care and has hospice coming in weekly.
The other thing I wanted to mention is never feel like you have only "one" choice when it comes to doctors. I know it's a pain to find and switch doctors but, it can make a huge difference in how this plays out. You need to find someone who is actually "helping" your dad while being "respectful" to you. Just because they have "M.D." after their name doesn't mean you have to go along with whatever they say. Most of all, don't let anyone make you feel that you're a horrible person while trying to help your dad - that is unacceptable for anybody to convey much less his doctor! No one else is in your shoes but you. Even those of us who have similar things going on in our own situation - it will never be like yours. You know in your gut if something is good or bad so listen to your intuition. Your dad is dealing with so much and I feel bad for both of you. I would like to see you both getting the proper care and answers that are desperately needed in this situation! Please take care of yourself too during all this and let us know how things go. :)
Then, I followed up with a Neurologist just to make sure there wasn't something like a brain tumor causing the dementia. The neurologist also did physical exam, reviewed records, tested reflexes, observed her walking, and gave her office written and oral exam. He too diagnosed with significant dementia. He also ordered an MRI and neuro-psychological exam.
You may need to have someone with your LO to offer correct information, if the patient gives incorrect information. According to my LO, she was able to take her meds, prepare her meals, bathe herself, etc. Which she could NOT do.
I'd also consider that your LO may be early in the process. I can't imagine a primary who isn't able to properly evaluate.
My father has had a couple of evaluations in the primary's office and he does really well. His insurance company regularly sends a nurse out to check him out as well. They come to the home, take vitals, do mental eval, etc. The last time, I listened in and daddy did great. I was a little surprised. The nurse commented on how artistic and sharp my dad is at 82. lol
I have a disabled nephew. I find that parents that have had a disabled child living with them, do not take advantage of all the resources available. I am lucky my nephew, for now, can live on his own. I have POAs in place and oversee his spending. I have taken advantage of everything I could to get him help. If Dad never did, you may want to. There is so much out there for autistic people. Unlike when ur brother was born.
I would push your doctor to have him checked at a memory clinic
Whomever is the POA for your Dad (and if there is not one now is the CRUCIAL time to get a DPOA for someone to handle health and financial decisions in future if needed ) should contact the doctor now, say that it is crucial now to get a good baseline testing done by a good neuro consultant of his or her choice. Do not take "no" for an answer. There are many tests you yourself can try if Dad would cooperate. Can he draw a clock set for 2:15 for instance. Can he name the last three Presidents. Can you give him three words (Pony, flower, eat) and repeat them to you after you are speaking for 10 or 15 minutes on another subject. Some of these will tell you whether the mind is slowly failing. I say this when, at 78, I often now cannot recall the word for, say, a certain flower (nasturtium the other day). And my 80 year old partner and I tease one another that neither of us should die because it requires two to make certain the burner that was on low is now off and the refrigerator door closed tight. As you get older the mind does fail and you are well aware of this. Someone truly going into dementia as often as not denies ANY changes, is aware they are occurring on some level, and is very fearful of losing dignity and choice. Good luck. As to meds. Nope. Not really. None work. They will TELL you that tests indicate blah blah but those tests are usually done by, say, Novartis, who just had to pay a massive settlement for paying doctors to prescribe these costly meds. That I know of there is no drug out there that slows or stops dementia; though certainly there are many great minds at work on it. Again, good luck.
As for my brother, he was never diagnosed as a kid. Mom was very defensive when I asked and said there was nothing wrong with him. He is definitely on the autism scale just never diagnosed. He is 47 and afraid to stay alone in the house. I have to drive him everywhere - parents always did - and he cannot handle his finances. He is on SSDI but it's not enough to support himself.
I have two children of my own who are self sufficient - thank God - but never in my life would I have thought I would have the responsibility of worrying about my brother's future. It's a shame our parents did not plan for his future.
Thanks again everyone!
Three months later I told him again she was having problems. Again he ask her some question. This time she did not do so well. He then had some of their test administered by his MA. Which she promptly failed. He then referred her to a neurologist.
Similar test, similar failure, did CT of brain and was shocked at how bad she really was.
Tried the meds. They did not work. She was too far along for them. We talked and discussed what might happen and explained some things to me.
Enter the old sailor to take care of DW. Started all of the learning and watching.
Watched the Teepa Snow videos. Read articles and stories. Had disagreements with her as to what she could no longer do. She did not like that part. She even tried to use my Ford keys to start her Dodge.
She did escape from the house once and walked nearly a half mile just to sit down at a traffic light to watch the traffic. Lost her once in a big store. Found her with the aid of the staff. (Thank you staff.)
Our lives seemed to change in some way on a daily basis. She got worse and quit talking because of the aphasia related to the disease.
For us, we grew closer. We had no friends or family to in the area to help with her care. I hired companions to stay with her while did the shopping.
this lasted about two and a half years before she passed away.
During all of this I was able to get guardianship and continued her care at home.
Guardianship requires diagnosis, letters to lawyers and courts, etc. It worked well for us.
Good luck with the road ahead.
Cost $300. Excellent investment. She received follow up periodically pre-Covid.
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