Wives - What were the early stages of dementia like...before or just after a diagnosis?

I read something years ago that really got me.
Most people that are diagnosed with dementia have covered up various signs and symptoms for upwards of 10 years before others notice.
So for a time line for me/us...he lived 12 years after his diagnosis and if he had covered symptoms for 10 years that would have put him at about 50 when he first realized something was wrong. And looking back that would be about right. (wonderful thing 20/20 hindsight)

In my Husbands case we were going someplace that we had been to many times and the first instance he took a wrong turn. I did not think much of it, I was not paying attention because I was reading but we got back on track after a block or so. The second time he missed a turn and I did not think anything of it the road was not marked well and it had snowed so the landmark we normally saw was covered.
It was the following year we went on a trip and it was pretty obvious something was wrong then but only after thinking back on the trip.
I have often though that Alzheimer's Association should change their "logo" from a purple ribbon to a purple puzzle piece (like the one Autism uses) because it is not until you start looking back and pulling instances from one time and something else from another time and when you finally put all the bits and pieces together you get a clearer picture that there was something wrong for a long time.
there were things that my Husband could do for a long time and other things he lost early on. I think it is a matter of what part of the brain is more effected by the damage being done. My Husband was non verbal for almost 6 years but he could feed himself until the week before he died.
I have said for a long time I dislike the "Stages" as each person is different and can do somethings but not others. So if you go by the "Stages" use it as a tool not simply say someone is in stage 1, 2, 3 and so on. I think it is more important to focus on what a person can still do not what they can not do. You can work around some things. the important thing is to make them feel comfortable with what can be done.
A few thoughts for you..
**Speak clearly, slowly..I read that it can take 30 to 45 seconds for someone with dementia to process what has been said. (In 30 seconds I am 5 subjects away from what I was talking about!)
**Lower the tone of your voice. I found that if I lowered the pitch of my voice my Husband would respond better and faster.
**Relax ..If you are upset that will more likely upset him.
** Pick your battles..You will NEVER wine an argument with someone with dementia.
** When someone asks if they can help..say yes! people want to help they just don't know what to do so give them something to do. Keep a list by the phone or refrigerator and when someone asks say.."ya know I am going to need eggs and milk, next time you are at the store could you pick some up for me? When you bring them by we can have a cup of coffee or tea" This will also give you a needed break.
**Find a GOOD support Group. This site is fine but you will need people close that you can talk to in person.
and
**Your friends will go by the wayside (another reason for the above..) Some will not know what to do, how to handle what you are going through and they will stop calling and asking if you can go to the movies, lunch, dinner...because you will turn them down because you have no one to watch your husband.

Find help.
If your husband is a Veteran there may be help there
Call your Senior Center see if they can help
Is there a volunteer group at your church?
Is there a volunteer organization in your town?
Do not be afraid to call Hospice. Hospice does not mean he WILL die within 6 months. My Husband was on Hospice for almost 3 years. I could not have done what I did for him if it had not been for both the VA and Hospice. With Hospice you will get help in the home, supplies, equipment, support, education, encouragement, volunteers that will help as well.

Hello,
I have asked this question also. DH was diagnosed 14months ago. I have said this many times , that I feel once he got the diagnosis, that he tries really hard to 'cover up ' his issues!!! There are days I swear he's just fine !!! Then every now and then he has what I call 'blips'. I read that Alzheimers is like a roller coaster ride...a lot of highs and lows. It's true. The frustrating part of the diagnosis is that everyone will progress at their own decline. There are stages and how long each one is ,that they can kinda guess at. It's not like any other disease out there. This is a disease that most of time you can't see physically....so we just have to watch and make notes of new symptoms. Sometimes I wish they could say they'll be in this stage for this amount of time, and then they'll be in this stage for...and so on. I think the early stages can be the most confusing and second guessing everything stages. My DH is somewhere between 3-4. He still works. He's very tired though and his sense of taste has changed. He still loves to go to all of our grandchildrens sporting events. His Dr. said the life span on average after diagnosis is 8 yrs. I truly think his will be longer....it's anyone's guess. I feel it's one big puzzle that we are trying to put together.....

Monica I saw your response to Kookie23...you can not let him drive an RV. It might be getting close to where he should not be driving at all. This is a big step for anyone particularly men. Or if that is not possible then you need to learn how to drive the RV. I would hate to have something happen and you are in the middle of no where and unable to drive it. (I can picture him driving and getting up and getting a cup of coffee or going to make a sandwich while cruise control is on.)
I was sort of lucky how I got my Husband to stop driving, we moved and only took one car, left the other at our old house that we/I was trying to sell. So we were down to "my" car. Then he began a new medication and I told him the doctor said he could not drive while he was on that medication. Soon after he stopped asking.

My mother refused to accept my stepfather ‘s diagnosis but he was able, with direction, participate in things like pre school age games with the great grandkids for about 5 -6 yrs. That was one way I gauged his decline, his first difficulty was remembering his turn, slowly he could do less and less until finally we had to roll the dice, move him etc. He gardened for maybe 4 yrs, stopping that more ended due to age( 88 or 89 when he stopped) . After about 4 years I noticed his agitation and confusion when we went to a restaurant, he’d shuffle his silverware, like he wasn’t sure what to do with it, stopped knowing what to order. Truthfully we were fortunate. He never was incontinent, was able to walk up until he went into the hospital the last time. He always was quiet but hadn’t talked for a couple years . I don’t think he knew who we were but did know my mother up til the end. It was probably 7 years from diagnosis until he died but imo he probably was sick longer by a couple years.

Monica,
My hubby is 65. He went to family doctor first. They did blood work also. Checked all his levels including B12. All came back normal...suggested we go see a neurologist. I would say if all of his blood work comes back normal , then please try to get him in to see a specialist. That's the best thing we did. The doctor was very thorough and didn't take his concerns lightly. The doctor did all kinds of tests to rule out any other causes. Also did a neuro/psych test.
Once my DH got the diagnosis it , he seemed so much better because he had an answer. Now with that being said, he tells people he's cured or he doesn't have it or he's better. This part is really frustrating for me. There are days he could convince me!!! DH says he feels that way because he feels he doesn't have any more symptoms. Ugh!!! When friends see him , they'll say ' he doesn't look like he's got Alzheimer's ' or they'll say ' he seems perfectly fine to me '. And that's a problem in itself. Most people when they hear the word Alzheimers, they think 'end stage' , where they're mostly not able to talk, eat, walk etc. I find myself trying to educate them on this. My DH symptoms are cognitive, thought process.You really don't see this physically. I do feel his body is slowing down, showing some mild signs ...bodily functions, energy, sense of taste. He is very emotional.
I wish there were support groups for younger people/spouses that are in the beginning stages to share our stories, get ideas, to have support and to be ready for what's ahead. Sneaky, puzzling,frustrating is what this disease is.
DH is still driving to and from work. He plans on retiring in 9months or sooner if needed. We are going on a trip and I'll do all the driving.
I wish I could help more...my thoughts are all over at times..lol.

Spouse hasn't been diagnosed; I've consulted his PCP's nurse about a few things he's doing, such as not changing his Depends in a timely fashion. I'd say that yes, he's noticing a difference, asks "why can't I remember" and "covers up" when I notice him trying hard to be nicer to me. Sometimes when I do something for him, he's overly grateful; most of the time he takes it for granted.

The hobbies part consists of his managing the inventory from his business that he retired from in 2017 and thus far he's handling dealing with it; it involves lots of internet time.

He asked me some months ago about what the name is for dementia and when I told him, he said that "people know when they're in the early stages and probably not later." That made me think he's considering the possibility of his having it.

I've come to grips with him having it and deal as best as is possible. It's a challenge.

Hi Monica,
my husband was diagnosed last July with atypical dementia, which means he didn’t fall into any category. We had a Neuro-psychiatric test done. Looking back, some of the first signs were his inability to make decisions. We were trying to buy property but he would move too slowly, or not make a decision. His driving skills were going... taking wide right turns, using two lanes... he would always argue about it... about anything, trying to cover things up. He would argue with the doctor during his test how he needed time to study, he wasn’t prepared and “ you’re going to tell me I can’t drive a car? I’ve been driving all my life! What does me drawing a clock have to do with my driving skills?”
It hasn’t been a year, but he is failing quickly. He cries more often, naps more, bed wetting accidents at night, has trouble understanding/ computing what I say. I keep it simple and talk slowly.
They say, “ if you’ve seen one person with dementia, you’ve seen one person with dementia.” We are all unique.
Ive learned much by watching Careblazers on YouTube on how to care for someone with dementia.
As far as hobbies, he lost his ability to do simple tasks and that’s been really hard for him. Example: he spent hours trying to hang a coat rack for me. There were multiple holes in the wall... I tried to stay out of it and let him work. He was a finish carpenter and could build house from foundation to intricate finish work, but he couldn’t hang a coat rack. It’s heart breaking to watch and frustrating for him. I helped him and we had it up in a few minutes. His brain isn’t the same. I try to distract him now from the projects he want to do... it’s too messy to try. I do look for simple things he can help me with.

Monica,
I’m sorry. I hear you about the blame. Early signs: if I asked, “ has anyone seen my purse?” He would quickly respond, “ see, you forget, too!”
When you mentioned your husband backing into his car, I recalled my husband starting the car & putting it into reverse WITH THE GARAGE DOOR DOWN!! He acted like it was no big deal. Like I was crazy to tell him you never start a car with the garage door down.
Its so hard and I’m sorry.
There are a myriad of emotions we go through as caregivers.
My husbands young; I call him my border collie. Never sitting down, always busy working on the job or around the house. Now he follows me around 24/7. I see my attitude IS the tone of the house. He watches my face and my tone, to know how his world is going. I try to speak softly,(I fail) not argue or debate and smile more... even though I’m sad, scared and miss my guy.
I have friends who call and we laugh, cry and pray together. That really helps.
Hugs to you Monica.

I have been noticing memory "blips" in my husband. Sometimes I am forgetful too and wonder if I am so tuned-into my mother's dementia that I am looking for issues where usually I would not? I wish there were tell tale signs. My husband had cancer treatments last year, and since then I noticed his memory is not as it used to be. Not sure if it is related to his treatments, but I worry when he has asked me twice when 9/11 happened and each time I answered 2001 and it did not seem to spark a memory with him. When driving recently instead of going directly through an intersection, he turned right then made a U-turn to make another right onto the same road. He has also asked me the name of that stuff is that you use for your teeth and I answered "dental floss" and yep, that was the word he was searching for. All these things together scare me. Hope I am worrying for nothing, but I'll be keeping an eye on it.