1 year in with MCI

Julie RN 1010

I have been reading posts for the past week and it is time for me to share. My DH at 66 yrs old was diagnosed 1 year ago w/ MCI. I see many changes, but he says he's fine. I have lost the partner I thought I had. He is not capable of seeing what I am going through since "he's fine". When I bring up his repetitiveness and losing his phone for the 3rd time in a day- he get angry with me. I am worried about my health and stress. Since I am at the beginning of this journey, can you wonderful people share how to deal with DH who thinks everything is fine?!!

Faith,Hope,Love

Hi Julie and welcome to this forum.  Sorry you have to be here, but you're in the right place.  You'll find lots of caring and understanding people here.  I've only been here a short time myself so I may not be the best one to answer this but here goes.  My DH thinks "he's fine" too.  So, there's really no reason to tell him he's not.  It took me a while to realize that getting him to recognize he wasn't fine was for my benefit not his.  I needed to hear him say that and take some responsibility for his disease and he was never going to do it.  He couldn't do it.  So, I don't go there anymore.  As for the repetitiveness I have learned to let it go in one ear and out the other.  It's like listening to a child talk on endlessly.  I listen for key words and let the rest of it go.  Not sure this helped.  But maybe some others will answer that can help you more.

White Crane

Hi Julie and welcome to the forum. I’m sorry you need to be here but since you do, you found a good place. Everyone here is caring and loving and will help as much as they can.  Some things I have learned over the years are don’t argue, don’t try to reason with him, and don’t correct him. It does no good to argue or try to reason or correct because he’s lost the ability to reason and think clearly.  It only stresses you out. When my husband was first diagnosed, I bought a book titled “Learning To Speak Alzheimer’s.”  it has been very helpful.  Being a caregiver is very stressful and you need to try and take good care of yourself. Visit the forum often and ask whatever questions you need to.

Dio

Ditto everything FHL and White Crane said.

As for my own experience, if he starts to say hurtful things, you need to: IGNORE. IGNORE. IGNORE.

Get his DPOA in place if you haven't already. Start taking over the responsibilities of paying bills and/or making financial decisions/transactions. He will forget.

If MCI diagnosis is already a year old, you may consider taking the next step in getting additional diagnosis from a neurologist specializing in memory disorders to prescribe treatment plan. If he doesn't think he has a problem, tell him it's routine examination. (We've learned to use fiblets to survive and to help our LOs.)

This forum is full of information and helpful people who have gone through the entire journey! You're with people who understand what you're going through.

Joydean

Hi Julie and welcome. Look up anosognosia, simple means he cannot recognize or except his illness. You are only stressing yourself out, let it go. The day my dh’s doctor told him he had Alzheimer’s is the only time he has ever been told. I have never mentioned it in front of him. There’s no need to cause him pain or frustration. The repeating things, he honestly doesn’t remember telling you before. One of the best books I’ve read and dh’s doctors recommended is “the 36 hour day “. But the best help has come from the wonderful people right here on this forum. Please don’t take this the wrong way, be kind to yourself and save yourself stress by not sweating the small things. This is a long hard road. But you can do this! We will be here for you.

Iris L.

Faith,Hope,Love wrote:

.  My DH thinks "he's fine" too. 

  I needed to hear him say that and take some responsibility for his disease and he was never going to do it.  He couldn't do it.  

This is a good description of anosognosia.  The PWD truly believes he is fine.  If you try to confront him with reality, he will resist and become upset.  Anosognosia is a characteristic of dementia and there is no "treatment" for it.  You have to learn work-arounds to get things done.  The members are experienced in the work-arounds.

Iris L.

Jeff86

Another welcome to the forum, Julie, and sorry you have reason to be here.  

Alas, you are correct that you have lost, or at a minimum are losing, your life partner.  The goal from here is to make life as good as it can be, for both of you, even as the end is foretold.

You’ve already received some good advice here.   Your husband is indeed experiencing anosognosia—not denial, but an inability to understand his illness.  Nothing you say will convince him he is not well.   So avoid an exercise in frustration.  

For a PWD in early stages, there are some big issues to tackle.  Maybe the biggest is to get your financial and legal issues in order.  Working with a certified Elder Law Attorney (CELA) should be an early stop on your journey.  This needs to happen ASAP, while your LO is still competent to make decisions and execute documents.  Relatedly, an AD patient’s loss of execute function means you will need to assume control of finances if that’s not already the case.

 A second issue you will encounter is driving and independence.  Numerous discussions on these boards about this challenge, but the loss of judgment and the potential terrible consequences of driving errors forces us caregivers to confront this risk.

You will also want to build your support team   This is a hard journey, and everyone needs help.   Part of that help is medical, for your DH.  But a big part is for you as a caregiver.   IRL support groups, those friends and families who can be on this journey with you, and this remarkable on line community can help you manage this most trying road.

And, on a more constructive note, early stage is the time to maximize doing things with your DH that you both enjoy, while the two of you can do it.  This is the opportunity to do bucket list activities.  

For many of us spouse/partner caregivers, this is the hardest thing we’ve ever faced.   It’s a little less terrifying, knowing others are working through the same challenges.  Good luck , and count on us to walk beside you.

Crushed

You are getting good advice.  It took less than two years for my wife's diagnosis  to change from MCI to Alzheimer's  She was only 60.We had 7 years of slowly declining partnership

In his mind it is fine, you have to work around it   
 

M1

Hi Julie.  As others have said, the painful truth is, from here on out you can't rely on him for the emotional support you're used to.  Coming to this forum may be the first step away from him, away from doing things as a couple, and towards building a support network for yourself that doesn't include him.  I remember that, and remember how much it feels like a betrayal of your "couplehood."  But it's a simple truth that you are already losing him, and by supporting yourself, you will be better able to fulfill all those promises you made for better, for worse.  It hurts, tremendously, but it's what we all have to face.

Tony484

We are at the end of Year 5 post-Alzheimer's diagnosis, with a "soft" diagnosis (meaning Dr. wasn't really sure) of MCI, and my DW has had total anosognosia (which I still can't pronounce correctly) the entire time.  Absolutely no clue, except for maybe the day of the Alzheimer's diagnosis when I obsessively talked to her about it thinking that would help her. Nope, it just made her feel temporarily bad. While the ansognosia has resulted in a few problems (dealing with loss of driving, etc) there was always some kind of work-around that did not require attributing anything to Alzheimer's. Although I worry about a little what she will think if/when memory care becomes necessary, on the whole my experience has been that anosognosia is an extreme blessing for us. I have to deal with the changes in her and the effects of those changes on me, which entails major suffering sometimes, but the fact that she will probably never need to know that there was anything wrong with her is a  comfort to me.  As others have said, it's very common, but in a way is interesting in that even as she has experienced extreme losses in her personal and professional skills, and as I have taken over 99.9% of the day to day responsibilities, she does not perceive any changes. Maybe when you can't remember the past, there is no reason to expect to be able to remember changes from that "blank" past.  Early on, I was focused on short term memory loss and assumed that she would retain long term knowledge of the past for quite a while, but when she was diagnosed to be in the early stage of Alzhemer's, she had already forgotten almost everything about her long term past. For example, she has always known that we were married, but she could not tell you a thing about anything that happened during the 38 years of our marriage.  I know this doesn't answer your question about what to do, but I know there is a lot of info in various places on this message board and elsewhere. Though as far as the repetitiveness, I knew intellectually that everytime she repeated herself, it was the first time for her, but even though I knew that, it has taken a long time to get used to it. I'm talking years and still get frustrated by it but have, mostly, learned to force myself not to react. As for the phone, that happened to, and I always took the blame.  "Oh, I think I put it somewhere. Let's look for it.".  That one went away quickly as my DW became unable to use her phone, to the point of forgetting how to answer the old fashioned land-line phone I had put in.  Good luck, and try to go easy on yourself.  And try to find a counselor who works with spouses of those with dementia if you can.  That has been a godsend for me.

Ernie123

I found this a very informative resource to understand dementia.

 https://www.smashwords.com/books/download/210580/1/latest/0/0/understanding-the-dementia-experience.pdf

Iris L.

Julie RN 1010 wrote:

 I see many changes, but he says he's fine. He is not capable of seeing what I am going through since "he's fine". 

When I bring up his repetitiveness and losing his phone for the 3rd time in a day- he get angry with me. 

Julie, I'm sorry I did not respond to you earlier.  What you have described are exactly the description of anosognosia.  Your DH truly believes he is fine, and he will resist and become upset if you try to confront him with reality.  

Anosognosia is a characteristic of dementia, there is no way to change it, but there are ways to deal with it.  You will have to learn the work-arounds from the members.

Iris

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ElaineD

Hi, Julie,

My husband doesn't have an 'official diagnosis' because of course 'he's fine"!

He would have to ask for any testing at this point.

I cannot discuss his 'deficiencies' with him at all.

I don't think it would help, anyway, if he 'knew' he has dementia.  He can't remember appointments, for example, and he just keeps asking me 'when is such and such appointment'.  He has very little idea of the passage of time.

When his appointment is at 2:30, 10 minutes away, he will start out the door at 1:15!   He still drives, and I guess it won't hurt him to sit in the waiting room for over an hour.

The thing is he doesn't remember that I've already told him many times about upcoming appointments.   I no longer tell him "I've already told you about this appointment".   He can't help his memory loss.

But he absolutely will not discuss this.   And what good would it do to discuss it?

Vascular Dementia is very strong in his immediate family.  It's only headed in one direction, of course.

But he no longer remembers vacations we've taken in the past 10 years (Germany, Italy Ireland).  He is calmer and kinder now than he's ever been...so that is a blessing.  We've been married 60 years.  I know I am losing him.....but I try not to worry, since it won't help at all.

My DH is MY caretaker since I am very disabled.  Therefore I will not be able to help him with any physical care, or if he becomes abusive, destructive and wanders.   We live in a retirement community (Independent Living) which also has Assisted Living and Memory Care.

We moved here due my disability, but it is a blessing because we have great staff who monitor us closely.

This forum is so very helpful.

ElaineD

Paris20

My husband has had anosognosia from the very first day that we heard MCI in 2015. Even now, after a stroke, and deep into AD, he still thinks he’s fine. I mentioned during my last visit with him that the dog has a vet appointment this week. He told me he’d drive me to the vet. Likewise, he told me he’s with me all the way for my outpatient surgery next month. I’m used to this by now. We’re beyond the repetition, forgetfulness, losing everything, etc., etc. The only guarantee is that it will get worse. So, we have to work around it. We lie, we hide things, we make up stories, we change the subject, just to keep him safe and to get through the moment. There’s no use in trying to explain, rationalize, or detail what your perceptions are. Once you learn to live with those truths, you’ll find your life more peaceful.

Care4Mom2

When I am looking for answers, I check this forum. I usually find someone who is going through what I am going through.

My DH was diagnosed with MCI two years ago??? Seems like only a year ago…. His short-term memory is pretty bad. He knows he has a problem, though. He just refuses additional testing. I talked to him about that the other day. He used to say he was afraid they would say he can’t drive anymore. That day he said, “They will put me in a nut house.” 

He is pretty intelligent. I was told by a neurologist that intelligent people tend to score better on tests than they are. So, where are we two years later?

He loses things frequently. He asks me the same questions over and over within minutes. I try to take a deep breath and not get frustrated. But, he sees the look on my face and reacts negatively to that. (I can’t win.) He usually prefaces his questions with, “You may have already told me this, but….” 

I can’t give him two things to do — Like when I am going out and I he wants to know what I want him to do. I either have to write it down, or just give him one thing to do. That doesn’t always help, though.

My problem is dealing with my DH’s personality on top of the memory issues. When I question something he is doing, he says, “I may have memory issues, but I am not stupid!” I have tried to never question what he is doing, but sometimes I slip up — like yesterday. I wasn’t feeling well when I questioned him and I blew up at his response…. Sometimes I just can’t deal with it… We had been fighting quite a bit. But that settled down when I stopped questioning him.

Right now, I am making sure I drive most of the time. Our new internist is happy I am doing that. I don’t want him to feel like he can’t do anything… But, I think it is getting to a point where I will have to drive all of the time.

I think it would be better if he is not aware of what is going on. He knows, but is not willing to stop doing things he shouldn’t be doing. It makes him want to do it more to prove to himself (and anyone else) that he isn’t stupid…. (Mr. Macho).

Sigh.

HollyBerry

I've forgotten how many years "we" were in the MCI stage before getting the full AZ diagnosis in January 2020 (happy Pandemic to us...).  It's such a weird stage, because you don't know how much to trust the person vs become overprotective, and I really struggled with figuring out what was depression, ADHD and MCI/Alz.   Thinking about it  now, it was a few years that were characterized by bad decisions, before and after the MCI diagnosis.  One time she rode my young horse while I was out of town for work - my young horse wasn't really started under saddle yet and she got bucked off and injured - BAD decisions.  She lost her phone in the airport 5 minutes after I left her at the gate and just thought she'd be fine without it - wrong.  There were a couple of epic episodes of getting lost, by car and on foot, both times were just a series of bad decisions, one on top of the other, well before her brain could be blamed for it in an Alzheimers sort of way.  I think this stage lasted 2 or 3 years.

I'm still trying to figure out how to cope with the mid-stage Alzheimers stuff.  Humor helps, when I can find it.  I've learned we really feed off each other - if we're both in a good mood, it's great, but if one is and one isn't, we hit some place in between.  I let a lot of things go.  I reframe a lot of things as "if you want to" or "it's your choice" when I really do have an agenda but I don't want to push that button.  I try not to take things personally...  and let things go (did I already mention that?)  Yes, I actually made a decent meal for dinner and you won't even try it because it doesn't smell right?  It's the second half of the jar of alfredo sauce I opened two days ago.  No problem, I can freeze the leftovers so you can ignore them for lunch some other day.

It got a lot easier once it became obvious that there was a problem and we started being more open about it with friends.  Once people know, they will either be more understanding or just ignore you, and then you can work with that.  There was a woman on this board who told a story about her husband wearing sweatpants to church.  She felt like that wasn't appropriate and they stayed home, until she realized that he missed going to church, so they went back.  Instead of getting funny looks about sweatpants, their friends said how happy they were to see him there again.  We've had some moments sort of like that. It helps.

Quilting brings calm

My mom did things backward. A misdiagnosed UTI made it seem as if she was in moderate to severe dementia in 2019.  Treatment got  her back to what I consider mild  dementia.  However, she wasn’t diagnosed until spring  2021and then only with MCI.  The NP in the neurology department won’t budge off that since her MMSE score was 23 then, and 25 a few weeks ago.  Yet there is no way she could  live anywhere less assisted than assisted living.  Where she and my step-dad have been since Nov 2019.   She doesn’t seem to be progressing  much, just has bad days  and not so bad days. 

She can’t balance a checkbook or write a check, barely operates  her tv and phone. No cooking, cleaning  or driving.  Repetitive questions, won’t play games or work puzzles. Doesn’t want anything to do with calling places such as doctors, or companies etc, - dumps all that on me.    Assisted living facility handles her medications.  We’ve had a lot of issues with anxiety and depression.  That seems to be fixed for a few months, and then ramps up. The more it ramps up, the worse her cognitive function is.