Early Onset Symptoms... What was your story? How did you tell your loved one that you were worried?

rishin

Hello everyone! I'm new here. My aunt reached out to me to let me know she was starting to become concerned about my great-uncle (who is in his early 50's.) He's been having some memory lapses and increased anxiety/frustration. His father had early-onset dementia, and this has us especially worried.

We're trying to work out exactly what we should be looking for, and how to approach this with him in the gentlest way that can help him get to an appointment for a medical diagnosis (if suitable) without putting him with any more strain than necessary.

What's your story? How did you learn that your loved one is suffering from dementia, and if you were the one to tell them or know the story of how they were told, how did that conversation go?

This is all new to me, so I'm happy to learn and listen to anything you feel is (or might be) valuable to share.

DTSbuddy

I denied there was a problem for a year after my adult sons asked me to get him evaluated. Finally they talked to their dad and told him they were worried about him, and wanted him to get some medical advice. They insisted that I make an appointment and one of them offered to come to hear the diagnosis. Later they sat down with him and talked to him about it, sharing their concern and sadness and love. Driving was an issue, so one of them read him the doctor's report with a diagnosis of primary progressive aphasia. It included the fact that insurance would not cover us if he was driving and got in an accident. So the kids really helped. My DH had worked in medical care, so he respected the accuracy of the report. He was still rational and communicative at that point. He did not argue. He has never been an angry person. He was sad. I think I thought that if I just ignored it, that I could help him get better; that the brain of my wise, athletic, altruistic, gracious, intelligent husband would heal. I was so angry and miserable, but I have become more accepting, and try hard every day to provide some cheerfulness, humor, and fun in his remaining years.

SusanB-dil

Hi rishin - welcome to 'here', but sorry for the reason.

We knew MIL was having some memory issues, and when it was confirmed several years ago now, she was upset for a bit, and then forgot about it. We do NOT BRING IT UP. She has anosognosia - this is not denial, but rather the firm belief that all is well. We go with the flow. Sometimes, that is hard to do! But there is no sense in getting her repeatedly upset. My mom is part of the 30% who do not have anosognosia, and does know things are awry. As @DTSbuddy mentioned, she knows of the diagnosis, and was sad. She has come to terms with things. My mom was a nurse, and her mother had early-onset, so probably understands more than most PWD's. She has learned to work around some of the things she can no longer do, because she knows she cannot do some things. MIL thinks nothing is wrong, and we do struggle to work around that.

We didn't have trouble getting MIL to the doctor. If a person is reluctant, however, I see mentioned often that you can tell your LO that it is for insurance purposes. A doctor could also rule out other non-dementia 'mimics', of which there are many, so you could get a more accurate diagnosis. The PCP (primary care) may even refer you to a neurologist for further testing. We do have a neurologist on our team, and very glad we do. They can adjust meds when needed for agitation, or to keep things 'somewhat' stable for longer periods of time. MIL has alz and vasc.

Meanwhile - is a DPOA in place, and HIPPA accesses? this is important. A CLEC (elder lawyer) can help you with this. Also, is he still driving? Probably should look closely at that.

harshedbuzz

@rishin

Hello and welcome. I am sorry for your reason to be here but pleased you found this place. This disease sucks, but early onset is a whole other level of awful.

I'm trying to parse a family tree here. Is the great-uncle your aunt's dad or someone else? Is your aunt the next-of-kin for this man or is there a spouse/SO who would fill that role?

The other piece that seems to impact "how to approach" is your DGU's approach to the implications of this real health risk. Is he one of those folks who have been proactive in genetic testing/healthy lifestyle, etc? Or is he more finger-in-his-ears "lalala I can't hear you?"

My story reads more like a "How Not to". I will share it, so you might see where I made bad choices and allowed gatekeepers to impede me on my quest to get diagnosed.

Background: My dad and I have never enjoyed an easy relationship. My late younger sister was his mini-me and favorite. When she died in 1994, his grief was profound and intractable. He started to drink heavily; previously he'd been a strictly social drinker-- wine with holiday dinner, a beer after golf, maybe a couple cocktails at a party or fancy dinner out.

My parents had moved to coastal MD when they retired in 2000 after their local country club friends stopped including them. In 2003 they bought a modest home in FL where they started to spend Jan-March. As the years passed, they started to spend more time in FL as once again dad was fighting with neighbors and dropped by the other golfers. By 2008, they were spending Nov- June on FL. Because they lived at a distance, visiting only happened 4-6 times a year for several days at a time which meant I got a real good look at dad's ability to function 24/7. Sometimes when you live near a PWD and see them regularly for short periods of time during their best time of day, you don't get an accurate read of the bigger picture.

TL;DR. It took me almost a decade to prevail and get things under some semblance of control.

The Story: I noticed that dad's mood had shifted to a darker place around 2005. He was never a happy-go-lucky dude around me, but this was different. He could be pretty mean to me, but now I noticed others were on the receiving end of this nastiness. I mentioned this to them both and suggested dad talk to his doctor. At this point I was thinking more depression than dementia, but it was enough to put him on alert and try to shake me off through ghastly behavior. He was enough on the ball to be cruel to my son (who has a high functioning form of autism) and insulting to my husband (to the point he punched him once despite DH being a foot taller and considerably younger). Around this time, I started to visit without either and cut back to about 4 times a year for 2 1/2 days at a time.

By 2008, he'd pretty much burned though family. My nieces who had once been very close, avoided him for the most part. (The older later shared with me that in 2010 dad went into her room on a visit and attempted to assault her sexually which both he and mom wrote off as "joking") Dad's brother no longer visited. When you have homes on a lovely golf course near the beach and one in Florida and people won't come visit, it speaks volumes. He'd "forbidden" visits from my mom's remaining sisters after fighting with one of them. I stopped bringing my son and husband. Dad clearly had some mental health issues; his geri psych agreed with me on this. I have a friend who is a clinical psych who knew dad pre-dementia who says he clearly had sociopath tendencies.

Around summer of 2008 I started to notice him re-writing family stories to include me as the antagonist. These were generally things my sister and his (both troubled individuals) did. I later found out these are called confabulations (when a person recalled the gist of a memory but back-fills the details incorrectly) and are quite common in dementia. He also had other kinds of memory loss. One night he got lost driving from my house (which he lived in for 13 years) to a high school directly across from his brother's house and not 500 yds from where he owned a business for a decade. At this point, I started raising the alarm with just mom as his next-of-kin. She remained in denial and blew me off with assurances this his behavior was "a normal part of the aging process".

Things got worse over time. His attorney and CPA both shared with me later that they were concerned about his cognition by 2010 and started to get him to write a POA and Advanced Directive as well as put his primary residence into a trust. He actively blew them off saying that I would use it to steal his house and put him in a home. He did agree to write a will but mostly to piss me off. In it, mom got everything if she survived him. If not, my nieces and I split it by thirds and my son got nothing. He wanted his brother to share executor duties with me. I kind of loathe his brother. I told him, I would not accept that and that if I didn't like the will I would contest it and let the lawyers get it all. He rewrote it-- I was sole executor and was to inherit half, while the nieces split have. He specifically excluded my son despite his attorney suggesting a smaller portion in the interest of being remembered fondly.

Things continued to get worse. He not only day-traded away $360K from their retirement nest egg, but he had also invested most of his money in REITs that focused on malls and retail spaces. I wasn't able to get my hands on his investments until I was an agent on his POA in 2016. Every so often dad would do something ridiculous-- he once called me and demanded I "call The Google and get his account back for him". I continued to work on my mom to get him evaluated for what I was now certain was dementia of some kind. I even gave her strategies to make it happen such as contacting his PCP privately and sharing concerns. I offered to help her draft a note with her concerns. I even said I would fly in for his next appointment is she wanted support. In retrospect, I should have done this myself by contacting the prescribers of his medications.

I did, however, do one thing right. I drafted my first Plan B. Their place in MD was a medical desert and TBH, I wasn't dazzled by most of their docs in FL. I researched "best available" in my metro area for diagnosis and management. It wasn't long before I finally got the chance to execute it.

HB

harshedbuzz

Sorry, I was 3101 characters too long. The rest of the post--

In February 2016 mom was under the weather. I called her daily and at some point she wasn't answering. Dad would report that she was at the pool with friends and feeling better, or that she was napping or even that she was planning to divorce him. The former 2 were plausible and that latter was as well. He was pretty nasty by this point. After about 10 days of this, I got a call from their local hospital that mom was a patient and not doing well. I'd been listed as an emergency contact with her PCP who supplied my information. I was able to fly to FL stand-by the next morning. It was President's Weekend, and I was the only one on the plane not wearing ears. Long story short, mom was in an autoimmune liver failure. The woman was the color of a school bus and dad didn't think anything was amiss. I later found out the PCP had instructed him to take her to the ER immediately and he'd decided to go to dinner and do it the next day. Which he forgot about. Fortunately, a neighbor saw mom and recognized how sick she was and drove her there.

Dad was a hot mess. He forgot where mom was. He crossed wires jumping a car and 5 minutes later put a fork in the toaster. He fought with me because I would let him have an open whiskey in the car I was driving. Mom recovered and was discharged. I stayed while she got her strength back and convinced her that she was going to take him to the memory center for an eval as soon as they returned to MD in May. Alas, dad's prostate cancer came out of remission, and he stayed in FL to have that addressed and they didn't make it north until July. I'd made the appointment for an evaluation for January 2017 (first available). In August, mom went to her sister's funeral in MA. When she returned dad was in a full-on psychotic episode-- the house was trashed, he was certain he'd killed someone and covered with cuts. She somehow got him into the car and met me at the PA Welcome Center where I drove them to the ER affiliated with the Memory Center where I'd made the appointment. Dad was admitted and given a tentative diagnosis of Alzheimer's but also treated for Wernicke-Korsakoff's which is caused by low Thiamine levels, in his case, from alcohol use disorder. After discharge, he was turfed to the Memory Center and given a mixed dementia diagnosis.

Sadly, WKS is somewhat treatable with IV supplementation and a sober lifestyle. He was sent to a SNF rehab for PT and OT and abstinent for 8 weeks which went a long way to gaining considerable cognition back. Had mom listened and acted soon, he likely could have had a much better quality of life until the Alz progressed into later stages. He progressed pretty rapidly and passed in April 2018 almost 10 years after I'd first started to hound my mother about an evaluation.

If your aunt is the logical next-of-kin, it might be prudent to contact his doctor privately and share his history and the behaviors she's seeing. If DGU is married, then that person should be given the opportunity to get this done. Your aunt could offer to support the spouse or do some of the legwork around it.

He may know because he's been diagnosed but isn't ready to share if he's a proactive sort. Many people are quite private about such things. Some people want to process this before sharing. Some don't want others to treat them differently or limit their independence in any way.

Or it could be he's aware of these changes and is terrified to verify his worst nightmare just yet. I suspect my dad was still cognitive enough 2008-2011 to know he was struggling with his memory and that I was the one person on the planet who would take the necessary steps to curtail him doing as he pleased.

Or it could be he has anosognosia which is a condition common in dementia that prevents the PWD from recognizing how impaired they are. There was a period where dad could recognize that his short-term memory was pretty much gone and would tell me it all came back to him while he was sleeping. He'd try to prove he was fine to take over his own affairs because he could remember mom's phone number from when they met. He still couldn't tell me where he was or what he had for breakfast. He was never aware of the other changes dementia brings-- apathy, lack of empathy, no higher order reasoning ability, and terrible spatial reasoning. He once picked a fight with me because I refused to park all 3 cars in his one-car garage swearing he did it all the time.

If there is a spouse and they remain in denial or aren't able to take next steps, then your aunt should perhaps take the steps I should have to alert DGU's doctors or at least have her own Plan B should this all land in her lap.

Brevity is not my way.

Cosmic

Long story. DW was an art teacher for the local community and one of her students was a nurse who just happened to be married to our PCP. She had started to notice some symptoms early on about 9 years ago, and DW had fallen twice during the classes claiming she tripped over throw rugs etc. The student (nurse) mentioned it to her husband our doctor. While setting up an art exhibit her students had to help her make decisions on where to hang pictures and they made comments to me about how well I take care of her. Nothing was hitting home with me though, didn't think anything of it. One night she went grocery shopping during a snow storm and called me saying she was lost and didn't know how to get home. I followed the GPS and tracked her down about three miles from home. A few months later I got a phone call from a complete stranger said wife had knocked on their door thinking it was a friend of hers. She got in the car and drove her back home. So lucky she ran into some wonderful people. On her next doc appointment our PCP did a quick diagnosis and suggested we see a neurologist. We did that and they gave her the regular test, clock drawing etc. and she failed miserably, couldn't even finish the test. Things were going well after that but I did all the driving. Wasn't until a few years later than things started going south in a hurry, word salad, ... you know the drill. Here we are now where she cannot bathe, toilet, eat without help. So it's been a few years but you learn along the way how to deal with issues as they come up. During this time when she was still somewhat in control we saw our family attorney and had all the proper paperwork signed, witnessed, finished up, DPOA, trusts, quit claim on our home if she sometime would have to go to long time care. Just by chance the attorney who is a good friend and his father is my best friend had lost his mother to Vascular Dementia so he knew what had to be done and what papers were needed.

Follow this site and you can keep ahead of the curve and recognize problems before the become unbearable.

forbarbara

I wish I could share but I still lose sleep over all the signs I missed.