Is it MCI or Dementia?

My husband & I have been married for 57 years - we were high school sweethearts!! He also has similar problems except that he has been diagnosed with Lewy Body Dementia - (which means in addition to memory problems, he "sees things, people, animals that are very real to him_ --- like your husband, - this has been coming on for several years - (since we both had Covid Feb 2020 - we both think it was brought on by Covid but Drs just ignore our idea - Feb 2020 was before testing - before shutdown - before we, the public, knew much about Covid!)
The memory issue was the first thing I & our daughter & son noticed - all of sudden, he couldn't remember how to play cards (500 - & Rook card games -- & he was a good card player) He had trouble golfing, then his eye sight was bad - he had to have surgery for Stramisbus (lazy eye) - he couldn't drive as he was seeing double! His hearing in right ear has always been poor, we've had 3 different hearing aids (all more costly than the last) but his hearing just kept getting worse -(which also contributes to Dementia because it cuts off information brought into the brain by hearing) --- we've finally been able to find a neurologist through Mayo clinic in Rochester, MN who prescribed a PET scan, which confirmed the diagnosis of Lewy Body Dementia. (Hard diagnosis as Drs/research still don't know what caused it or how to stop the progression)
However, there has been some hope - Dr Botha (Mayo Clinic Neurologist) affirms that HEALTHY DIET (Mediterranean Diet with emphasis on GREENS, FISH, CHICKEN, NUTS) EXERCISE - (to make your heart work - weights, balance, walking 1/2 hr/day), WATER HYDRATION, & STAYING SOCIAL will do the most to combat the progression. (having said that - my husband argues that exercise can be vacuuming, lawn chores, etc. -- but Dr Botha suggested he think of Diet, Exercise, Hydration, Socialization are prescriptions - drugs, that will help slow the progression. (My husband takes Aircept, which is a Dementia drug that is supposed to make hallucinations less bothersome (?) - he's been on High Blood Pressure meds for years, & he takes potassium, & daily Vitamin.) He also have been approved for a Cochlear Implant in right ear - the Surgeon (Mayo Clinic) assures us that any help the brain can get to bring information into the brain, will be advantageous!!)

I too, run the gamut of patience, frustration & then angry outbursts at my husband, or at the whole diagnosis. (I have bouts where I'm angry at God for not taking this away - my husband has been a patient, Jesus trusting believer his whole life -- so I question why God doesn't take this away. But I too, Believe Jesus died for me & I hold on to that fact when I am angry!!) ( and of course the people in Ukraine, Russia, Israel, Gaza, & many countries across the world, suffer much more than we do!!)
We rec'd the March 2024 AARP Bulletin - "THE FUTURE OF ALZHEIMER'S" -- that too, gives us hope! If you haven't read it - get a copy - it helps to know "they" are finding ways to combat Dementia/Alzheimer's - and the myriad of diseases that can cause it!

Thank you for your reply. You are correct - he doesn’t trust doctors and he has begun to mistrust his primary care doctor. I don’t trust his primary care doctor either and I get the feeling from his doctor that he just rushes SO through and doesn’t really listen. SO goes for his wellness checkup every year m, where they have him draw a clock with hands, remember words that are given to him at the beginning of the exam, etc. I have gone to a couple of those with him and I feel like there is no communication from the doctor regarding the results of the exam. Any issues he has with pain in any areas of his body - back pain, neuropathy, hearing loss etc are referred to a specialist, only at the request of SO and then we have to follow-up to make sure it happens. Sometimes we just do our own research to find a specialist and then SO loses confidence in them too. 😳 SO does his own research online about supplements. He keeps saying he is going to find a new primary care doctor, but he doesn’t take the initiative to do it. I will see what I can do about helping him find a new primary care doctor. Thanks for your concern. We both have good days and bad days - the good peppered with bad - at times!

Hi, when I knew my husband was acting differently we had his Doc refer to a Neuro clinic. They did 3 hours of testing to come yup with a diagnosis.
I wonder if you need to kick it up a notch and make an appointment with his Doc without him, just so you can get advice and next steps. Maybe he'll end up coming with you if you tell him you are so concerned you made an appointment, and maybe your insurance company website has a search for providers so you can see their ratings and choose a Doc that's a better fit. Good luck to you!

Thank you for your reply. You are correct - he doesn’t trust doctors and he has begun to mistrust his primary care doctor. I don’t trust his primary care doctor either and I get the feeling from his doctor that he just rushes SO through and doesn’t really listen. SO goes for his wellness checkup every year m, where they have him draw a clock with hands, remember words that are given to him at the beginning of the exam, etc. I have gone to a couple of those with him and I feel like there is no communication from the doctor regarding the results of the exam. Any issues he has with pain in any areas of his body - back pain, neuropathy, hearing loss etc are referred to a specialist, only at the request of SO and then we have to follow-up to make sure it happens. Sometimes we just do our own research to find a specialist and then SO loses confidence in them too. 😳 SO does his own research online about supplements. He keeps saying he is going to find a new primary care doctor, but he doesn’t take the initiative to do it. I will see what I can do about helping him find a new primary care doctor. Thanks for your concern. We both have good days and bad days - the good peppered with bad - at times!

I wanted to post an update to my first comment in this discussion. I took the advice that was posted regarding finding him a geriatrician. In doing my research, I decided that I could change my primary care doctor also - so I am now seeing the same geriatric doctor that he sees. So I thank you for the recommendation because I would not have thought of this on my own. ❤️

His first appointment was in April and we both liked her immediately. He had his annual visit at the time and she rescheduled him for a three-month follow-up to do a more extensive memory test, which was this past week. She could see the results from a previous MRI of his brain that was done 6 years ago but she did not order another one at this time. He did well on the more extensive test that she gave him this week, so that was hopeful, and she will use this test as a baseline for future tests. She has adjusted some of the medications and eliminated some others that his previous doctor had prescribed. He has been willing to follow her instructions and has confidence in her, as I do too. She ordered blood work labs at that visit, which he had done the same day, and he now has a hearing aid - as she recommended.

We have been busy! And also since my first post in March, he has seen an orthopedic doctor for his back and has completed physical therapy and a new MRI on his back to determine if there is further treatment that he can undergo to alleviate that pain.

I feel like things are already improving when we stay focused on exercising, eating the right foods, doing mental exercise by playing memory games, doing our physical exercise, and socializing with our neighbors in our independent senior living community. Sitting and napping all day is never good for a person’s mood and we both know that. So trying to stay active, even though there are still those days ….

I still get irritated at times - I am no angel 😇- when he forgets things and when he can’t seem to focus on what I’m saying (when he doesn’t wear his hearing aids) and that then leads me to irritations about other petty things about his personality that were not so great of an irritation in the past. I need to remember how I feel when younger people look at me and treat me the way I treat him at times - superior with the attitude that “I am smarter and more capable than you”. I am not so young either and I am in this “for better or for worse, in sickness and in health ….” and I do cherish our good moments together. 🥰

@tay1, what a wonderful update. In addition to hearing that a switch to a geriatrician has been beneficial for both of your health care needs, learning that the replies from members encouraged you and were helpful and supportive is valuable feedback. It shows that reaching out is not only a burden shared and halved, but also a way to find solutions and possible next steps.

Of course, you still get irritated sometimes. No one expects you to be the constant angel. You are in your relationship 24/7 every day, with all its ups and downs, trials and triumphs. I think it is a comendable exercise to be able to step outside yourself and consider a single situation from an outsider's perspective to help temper our reactions to a given moment. But can we really expect to be 100% all the time? Nope. This reminds me of something that @indianascott often says about good is good enough or something similar.

- Easing the Burdens of Caregivers: Meet @IndianaScott https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/easing-the-burdens-of-caregivers-meet-indianascott/

What exercise and physical activities do you and your husband do together? What activities do you cherish for yourself when you're able?

Thank you for your kind words and encouragement! I have to admit that I am not so far into the caregiving role as most of the members here. I have just begun witnessing the memory decline in the past few years and I am not a full-time caregiver. I have read what others have posted and am ashamed that I have complained about my husband who is still able to function physically, but is having difficulty at times remembering. There are many instances that give me cause to worry and that is why I came to the group one day when I was having a bad day of coping and really beginning to accept that maybe my partner is in the early stages of cognitive decline. I wanted to research and also needed a place to vent. I found this group in Mayo Clinic and I feel so comfortable posting here and sharing.

We have a Fitness Center in our senior community where we exercise a couple of times a week and we enjoy walking and playing ping-pong. We also play cards together and enjoy watching movies, although he falls asleep a lot when watching tv. We enjoy visiting and playing games with other couples here.

I enjoy getting out and spending time with family. I also enjoy journaling and, believe it or not, cleaning out closets, and organizing. I think this last activity helps me because it is something over which I feel I have control, giving me a feeling of instant gratification.

Thank you for the link to @IndianaScott. He is an inspiration!

@tay1, what a wonderful update. In addition to hearing that a switch to a geriatrician has been beneficial for both of your health care needs, learning that the replies from members encouraged you and were helpful and supportive is valuable feedback. It shows that reaching out is not only a burden shared and halved, but also a way to find solutions and possible next steps.

Of course, you still get irritated sometimes. No one expects you to be the constant angel. You are in your relationship 24/7 every day, with all its ups and downs, trials and triumphs. I think it is a comendable exercise to be able to step outside yourself and consider a single situation from an outsider's perspective to help temper our reactions to a given moment. But can we really expect to be 100% all the time? Nope. This reminds me of something that @indianascott often says about good is good enough or something similar.

- Easing the Burdens of Caregivers: Meet @IndianaScott https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/easing-the-burdens-of-caregivers-meet-indianascott/

What exercise and physical activities do you and your husband do together? What activities do you cherish for yourself when you're able?