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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?

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My LO was already living in a local AL when I requested that she be seen for formal cognitive assessment. The very capable psychiatric PA who worked in the AL used formal testing, conversational interaction, and other tools to produce a succinct 2 paragraph statement describing useful suggestions for LO’S family and those caring for her.

Cost $300. Excellent investment. She received follow up periodically pre-Covid.
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Yes I told our pcp that Luz was having problems. He ask her some simple questions and spoke with and said she seemed normal to him.
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.
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Thank you all for your support and advice. I am looking for a geriatric doctor now. There are two in my area I will contact to see if they actually specialize in geriatrics. Some say they do but are actually just Family Practice. In the meantime, he was actually at the doctor's last Sunday to confirm another UTI, which was positive. He was in the hospital with the first one early July and his urologist wants to do surgery on a very large (golfball size) stone in his bladder because of the danger of reinfection, which of course did happen. So next to a cardiologist to see if he is even fit for surgery. After that is handled, I will find a neurologist, or get a referral from the new PCP to test for dementia. Sounds a lot like Lewey's from the description. I'll also explore memory care centers to get him on a list for a room. Might have to be soon! I do have DPOA so I'm good there.

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!
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NobodyGetsIt Jul 2020
Thank you for updating us. It sounds like you've been able to put a plan together quickly since posting your question just a couple of days ago. Yes, it is a shame your parents did not plan for his future. But, that would be hard for them to do if they were in denial about there being anything wrong to begin with! You are very fortunate to have two self-sufficient children - that is definitely one less thing you have to worry about. Please let us know how things progress with regards to your plans. Take care!
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Yes. Certainly you recognize that this is entirely inadequate. There is honestly few ways to tell what is happening in the brain until autopsy, and they will tell you certainly enough that say Lewy's Dementia, which my brother had, cannot be diagnosed until autopsy. HOWEVER there are many things that indicate it on scan and on exam (the hallucinations of Lewy's are so entirely different than other dementias). Dementias vary in how they descend as well with frontal often being in stair steps down that have plateaus of stability, Alzheimer's having a slow consistent downward descent, and Lewy's often up and down and all over the place. If your doctor doesn't understand some of these things he is not very competent. Given how specialized treatment is today the way best to get your elder diagnosed is with a competent neuro exam which will likely also include a brain scan. Some changes in white matter, in different lobes are indicative of changes occurring.
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.
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My mom is 87 about 2 years ago she was having some memory problems losing things and having repeated falls I took her to see her doctors and a memory test was done where mom did ok but I wasn't prepared To let them fob me off so as mom got worse I decided to go private and Mom was eventually diagnosed with Lewey Body Dementia Mom only started having problems when she was 85 and now just 2 years later she’s in a wheelchair can only say so many words is incontinent and doesn’t recognise me or other family members
I would push your doctor to have him checked at a memory clinic
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I suggest a neurologist if a geriatric doctor is hard to find. A diagnoses will help with invoking you POAs.

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.
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That's unfortunate for sure. You would think the doctor would be more informed. With my LO, she was diagnosed in the Primary's office after conducting a mini evaluation test. I also provided info the primary needed, like, repeating, not bathing, etc. I had a list of my observations. She did really poorly on the eval so a diagnosis of significant dementia was determined right there.

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
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Yes it is a complicated situation for sure and I appreciate your advice. I will ask dad's doctor for a referral to a neurologist. Dad had a very good doctor at the practice but she left. Now we're left with this idiot doctor who is no help. I wanted to change anyway after his PC left the practice. Thanks for the advice!
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Dear Leguess,

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. :)
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leguess Jul 2020
Thank you so much! I think I worry about my autistic brother more than my dad. Danny has already lost his mom and is holding on to dad for dear life. Things being how they are now (covid) and not being able to visit dad if he is in a facility makes me work that much harder to keep him here with us. He is beginning to have so many health issues, however, that I worry we are not capable of caring for him at home, even with a Home Health nurse coming out once a week to check on him. Thanks again, I know everyone here is dealing with difficult issues and I really appreciate the support everyone gives!
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My mom's doctor did a mini cog about 15 questions?in office then referred her to a neurologist and neurophyscologist to do a full work up.
Her neurologist did a brain MRI, then based on the long many question test the neurophyscologist did and MRI diagnosed mixed dementia both vascular and Alzheimer's.

My mom can tell you her name and birthdate. But not the month or year we are current in. Couldn't tell them what city we were in.
Was told a list of three items purse, hat, phone. Repeated fine, but 5 minutes later asked what they were told the doctor three completely different items.
Got more agitated as the questions went on and I told her I couldnt help her answer.
She didnt agree she shouldnt drive, so doctor set her up at a place that does driving assessment and they did a short assessment there before in car test. Which she failed, and is mad about; she doesn't forget that !

Had to do more of these tests. First to go into Assisted Living they require her to do assessment.
Then her long term care insurance required it after she moved in to access benefits. Then she had to another one over Zoom to return to Assisted Living because they noticed her decline. She did much worse. She's in Memory Care now. She got really annoyed with me on the last assessment because I wouldn't let her cheat by taking notes like on the remember these 3 items.

I stacked the deck a little because I knew she was having issues, but didn't want to admit it ( or just didnt have the ability to recognize- think its a bit of both), I scheduled the appointments in the late afternoon, since she can showtime for a while, but its harder the more questions there are and the tireder she is. Her confusion is worse right after waking either in the morning or after a quick doze off, and then later in the day.

Before you get an official diagnosis, get Health POA and Durable POA set up. Once the diagnosis is official and in their medical records that is very difficult to do.
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leguess Jul 2020
Thank you. I had a DPOA and Health Care POA set up when he moved in with me 2 years ago so I am good there. Good thing too, because he says he does not trust me anymore!
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My husband's neurologist referred him to a Memory Care Center, where he was thoroughly examined and questioned and diagnosed with vascular dementia. As his wife, I already knew that he had it, but wanted an official diagnosis. You probably need to find another Dr. that will guide you in the right direction. As far as medications to "slow down" the process, that's probably very optimistic on your part, but they do have medications to help with his mood and personality disorders. Do your homework and get your dad the help he needs and deserves. Good Luck!
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leguess, his PC is a dope. Please try to find a geriatrician or gerontologist, internist, or even neurologist. There is far more to a basic cognitive exam than answering 2 questions that are embedded in one's long-term memory. Also, have tempered expectations about what, if anything, meds can do for him regarding his mental decline. Your profile indicates a complicated situation, so you definitely need more of a neuro psych exam for him from an experienced (and caring!) medical professional. I wish you all the best!
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