Newbie help

LaurelGE

My husband was just diagnosed on Thursday but I have known for a while that something was wrong. He can still care for himself but I do all of the cleaning, banking and appointments, etc. the dr we saw said that he can slow down the progression by working out, eating clean and so on, now my husband thinks he’s ok if he does just that. He doesn’t want anyone to know about the diagnosis. He doesn’t want to talk about the future but he could not draw even one number in the clock on the dementia test. Is this just an adjustment period? I want to hit the ground running and he wants to just be working out. 

Any advice for some in the early stages is appreciated.  I went through something similar with my father two years ago with Lewybody but I wasn’t the main caregiver there. 

Gig Harbor

It is hard to give advice because everyone is so different. My friends husband scored 28 on the test and my husband is probably less than 10 yet his bathroom habits are 100% better than her husband. Some progress slowly- my husband’s symptoms began 11 years ago- and others pass away within 4 years of symptoms starting. It is impossible to guess how he will progress but you will need all the patience you can summon. I fall short in this.

Pat6177

LaurelGB, welcome to the club no one wants to be a member of. This forum is a wealth of information and you will learn a lot here. One of the first things you will want to do is to see a Certified Elder Law attorney. You will want your affairs in order and must get your husband to sign both a medical power of attorney and a durable financial power of attorney. You want to be named your husband’s medical and financial POA but you don’t want your husband named as your medical and financial POA. The attorney should also help you with Medicaid planning. 

As for your husband’s attitude, there is a condition called anosognosia where the person is unaware of their deficits. You might think it’s denial but they just believe they are fine. 

An issue that many of us have dealt with is driving. My DH was told not to drive when he was diagnosed. He was told he could get a formal driving evaluation done but of course, he said he wasn’t going to do that! By hook and by crook, he is not driving. 

These are just a couple of the things to be addressed. I’m sure others will post with more suggestions.

Pat

caberr

My husband was diagnosed 3 years ago in May.  Wanted no part of meds in the beginning.  I, of course, wanted to try everything and anything to help. He did agree eventually.  But I do agree with exercise and diet. 

He was a runner.   He continued to run, gave up sugar and started going to the gym with a friend 3 times a week.  I saw a big difference in him. 

Then the pandemic hit and wasn't able to go to the gym and we both slowed down.  We did take  walks and he would jog but he went downhill.  I take him to the HS track and he runs (jogs). He needs the exercise and feels better after the track.  I don't know if he could follow direction at the gym anymore. 

Basically the diet (especially no sugar) and exercise did help him.   Good luck

Ernie123

In addition to the good advice above, I would recommend calling your local Alzheimer’s Society and speaking with  a counselor. They have years of experience guiding caregivers and PWD through the course of this disease. Join a support group where you can share your experience with others on the same journey. Take advantage of  day programs as your DH progresses so you have some respite time. You cannot deal with this alone effectively for yourself or him. Accept the supports that are available and the Alzheimer’s Society is the first place to start.

Iris L.

LaurelGE wrote:

 He doesn’t want to talk about the future but he could not draw even one number in the clock on the dementia test. Is this just an adjustment period? 

This is anosognosia.  Many PWDs (persons with dementia) are unaware of their impairments and do believe that they are fine.  If you try to correct them, they will become upset.  You will have to learn work-arounds in order to get things done, which the members will tell you about.  You have to plan the future, he cannot.

Iris L.

Ed1937

Laurel, you have a lot of excellent advice above. Pat suggested you see a CELA, and that is something you do not want to do later. If you wait too long, you will certainly be very sorry. The first visit will likely be free of charge, but verify that when you make an appointment. One of our members, Joe, saw several CELAs, and found a great deal of difference in price for basically the same services. Some people say they can't afford it, but the reality is you can't afford not to. Welcome to the forum. We have a lot of good people here, and they'll help.