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Chammer
Posted: Wednesday, June 3, 2020 5:08 PM
Joined: 7/31/2016
Posts: 23


How did you have "the conversation" with your LO that their brain isn't working correctly anymore?  I have shared here before that DH doesn't have a diagnosis of dementia, but is demonstrating lots of things that have me, our adult children, his co-workers concerned.
Ed1937
Posted: Wednesday, June 3, 2020 5:56 PM
Joined: 4/2/2018
Posts: 2918


Hi Chammer. I read your profile. Here is a link that might be of interest to you. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4805404/#:~:text=In%20conclusion%2C%20Wernicke%2DKorsakoff%20syndrome,doses%20result%20in%20better%20outcomes.

Does he understand that he has problems? If so, you might tell him that there are many conditions that can mimic dementia (this is true), and some are treatable to the point that it can be reversed. But he will have to be tested, which takes quite a bit of time and different tests. Best of luck to you.


harshedbuzz
Posted: Thursday, June 4, 2020 9:54 AM
Joined: 3/6/2017
Posts: 2230


Perhaps it would be best to have the conversation with his PCP first. You could share a bulleted list of concerns- including his drinking- and then have an appointment where the doctor can do a quick screening and order the appropriate blood tests to R/O something like a vitamin or hormone deficiency. 

As ED pointed out, WKS can be caused by excessive use of alcohol. It's also a risk of eating disorders, bariatric surgery, HIV, and some cancers. It can be treated with IV Thiamine supplementation and lifestyle changes that would include abstinence. 

My dad had mixed dementia- Alz and WKS. He was couldn't remember new information and often confused details (confabulation) of what he could recall from the past. The first ER didn't do the appropriate testing, but the second hit on WKS right away and started tx before he'd even been admitted. During the time he was hospitalized and in rehab, his memory and confusion improved considerably. Alas, once he started drinking again and his Alz progressed things got worse. But he has a nephew who was in his mid-50s diagnosed with WKS who remained sober and who kind of plateaued for 10 years. 

Lorita
Posted: Thursday, June 4, 2020 12:10 PM
Joined: 12/18/2011
Posts: 11781


Hi,

 No conversations or any kind here regarding dementia or what was happening.  Charles did have some testing done but, again, we had no discussions about it after we left the doctor's office.  I saw no reason to bring it up and make him feel bad about it or afraid of what was to come.  One person doing the worrying was enough for us.  My job was to keep him as comfortable and normal as was possible.  It wasn't always easy.


Marie58
Posted: Thursday, June 4, 2020 1:34 PM
Joined: 12/31/2018
Posts: 421


Chammer, I struggled with this same question before DH's dx 4 yrs ago this month. I had been keeping notes in case I had to 'prove' what I was seeing. I prayed and prayed as I didn't know how to bring it up. Then he came home from work one day and said a coworker mentioned that she thought he was having some issues and that he should see his doctor. He made an appointment himself and the rest is history. What an answer to prayer for me! As harshbuzzed mentioned, maybe you could talk to his PCP. Or maybe there is a friend or family member who is also noticing things and would be willing to talk to your husband. Best wishes, this is a tough one.
Jane Smith
Posted: Thursday, June 4, 2020 2:44 PM
Joined: 3/23/2015
Posts: 109


Chammer, if you don’t mind the question, what do you want to accomplish?  A discussion about his issues, for him to admit/accept/comprehend there are issues, to get him to the doctor, some of all or none of the above?

If it’s to get him to the doctor perhaps consider another way to encourage an appointment. A helpful doctors office might be willing to make him an appointment for his “regular” or annual physical, a check up, a medication check, something related to COVID-19, a “Medicare required” appointment, a wellness check, a vaccination, something like that. In earlier stage dementia when my mother was resisting going to the doctor, she could be talked into it if the doctor office called her and either said she needed to come in to be able to get her prescription (she was emotionally attached to that idea) or “because of the insurance/Medicare requirement.”  Neither was true, but it worked. 

If you have permission for the doctor to talk to you, great. If not, ask them for hel,p to get permission. And remembered that even if they can’t talk to you, they will listen to what yo have to say. Send an email or fax or letter in advance. Take a copy with you to the appointment. Position yourself so you can nonverbally clue the nurses and doctors as to whether what is being said is accurate. I found it best to sit right next to my mother but just slightly pushed back. She couldn’t see me nodding or shaking my head as her peripheral vision, always poor, was affected early on by her dementia. I could even do hand gestures she couldn’t see like okay or so-so or thumbs down.

If you are intent on a big conversation, I’d think carefully about that. It may not achieve what you want and may have unintended consequences. If you want him to admit there is a problem or accept it, please know you may be up against anosognosia, which is caused by the dementia and means the brain is damaged in such a way that it cannot comprehend that there is a problem or accurately take in facts and data. It’s not the same as deliberately ignoring facts or denial by a healthy brain, but it can sure seem like it. Often someone with dementia will say there is nothing wrong with them, not executive functions, memory problems, a broken leg.  I know it sounds nuts but it’s unfortunately common and can cause families and caregivers no end of problems. 

Good luck and hope you find something that works. 


38Winks
Posted: Friday, June 5, 2020 1:36 AM
Joined: 3/7/2020
Posts: 91


I must confess I avoided the conversation for too long although I and my children saw the signs for some time. He has a history of AD in his family so I finally made him go to the doctor’s under the guise of getting a baseline evaluation done. Unfortunately, he was very pleased with himself that he fooled her. Less than a year later, when his dreams(night terrors) got so bad I was concerned for myself I insisted he go back. He was already in the middle of his AD. So do what it takes to get started early bc that’s when the meds they have work best. We fortunately had great supportive friends that were also talking to him in the practicality of getting diagnosed early.  Unfortunately he was a little too stubborn to go sooner. Although he did immediately turn around and recommend to his brother and sister to get checked out for that baseline evaluation. Good luck.
Chammer
Posted: Saturday, June 6, 2020 11:22 AM
Joined: 7/31/2016
Posts: 23


I don't know that a diagnosis will do anything except give us some tools to justify putting legal stuff in place and help explain some of his behavior.  

Dh is only 57 yo and we have a business together.  He is creating challenging work situations because he is becoming more and more forgetful, paranoid, suspicious, secretive, and moody.  He has always been a micromanager and is becoming even more "controlling" except that it is pointless and ridiculous.  We are fortunate that the folks who work for us recognize that he is changing, but other business associates who don't know him well don't realize that some of his pie in the sky schemes are just that - pie in the sky.

We don't have legal paperwork in place - no POAs, no will - because he doesn't want to "think about that."  So right now I have no way to protect him or our business.  I had posted something similar a while back and got very good suggestions to get life and long term care insurance in place.  We have a small life insurance policy and I have applications for additional life insurance, but the long term care insurance is very pricy so that may not happen.

He sees his endocrinologist every 3 months and after much gentle persuasion from me over several months finally went to see a cardiologist last fall (due to lots of heart symptoms) and had to have a stent put in one coronary artery.  He saw a neurologist a few years ago for restless leg but refused to take the recommended gabapentin because he thinks "doctors are just in it to throw pills at you and charge lots of money."  He refuses to add more medicine to his current meds so again, I think a diagnosis will only help to help explain some of his behavior and help with legal stuff.  

One of our sons has lived out of town for college for the past 2 years and even though he visits a fair amount he hasn't experienced the full effects of what is going on since he isn't here on a daily basis.  He called me this week because he was upset with DH because they have the same conversation about certain things and DH never remembers that they have already talked about it and gets mad every time.  I had to tell him "well, dad is changing."  

DH has also said to me on several occasions that his brain doesn't work like it used to so he is at least aware, but I don't know if he realizes the extent.  

I will start the process of legal paperwork this next week with the caveat to him that we need it in place "just in case" which is true and see how things go from there.