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at what point is decion making all yours
Posted: Sunday, August 18, 2019 9:52 PM
Joined: 7/26/2019
Posts: 84

In April, my DH (74) was diagnosed with MCI by neurologist psychiatrist.  PCP ordered MRI and blood tests and said "dementia is creeping in".  I knew something was terribly wrong but I couldn't get DH to see a doctor earlier. 

I have observed DH has no short term memory, no attention span, confused where we are most of the time, needs help with checkbook, etc. and fixated with relocating.  He was mad with me and even told me he wanted me away so he could be free.

With medication, he seems to be himself most days.  'I'm no longer happy here'.  So we are relocating.  I have always considered what he wants or given in to what he wants in the past.  Is it up all to me from now on?    


Posted: Monday, August 19, 2019 5:07 AM
Joined: 4/2/2018
Posts: 2762

My wife has many of the same problems. She also wants to move. When I ask her where, she will pick some place where we don't know anyone, don't know the area, don't know about medical care, etc. I told her that isn't going to happen.
Posted: Monday, August 19, 2019 5:22 AM
Joined: 3/6/2017
Posts: 2166

I am so sorry you are living this.

The short answer is that you have to make decisions for both of you. One of the more subtle impacts of this disease process is the loss of higher order thinking- people with dementia lose executive function and higher order thinking skills fairly early on and can not be trusted to make sound choices. This can lead to a difficult situation while they are lucid enough to want to assert their agency but would make unsafe or unsound decisions. 

My dad had a strong borderline bully personality and was clearly drawn to my mother- the baby of a large family who never asserted herself- because he always got his way. With dementia, that had to change and it was difficult for both of them. Until my father was well into stage 6, my mother struggled with wanting to defer to him even when his choices will dangerous. 

In your situation, I would not move unless it would improve your situation personally. I would move to be nearer family who could help as the disease progresses, to be in a community that had more or better support services available or nicer MCFs that accept Medicaid if that's your reality. I would especially avoid a move that isolates you away from your own family and friends and that would position you where your DH is your advocate should you become ill. My mom almost died the last winter they spent in FL because dad was too impaired to appreciate how sick mom was and get her help. She nearly died on his watch all the while calling me to complain my mother was being mean to him. 

Remember, too, that this is a terminal illness and that someday you will likely be on the other side of caregiving- I would consider that, too, when choosing to stay or go.
Posted: Monday, August 19, 2019 7:59 AM
Joined: 2/2/2014
Posts: 5574

We had always been team decision makers.  But from the time she could no longer sign her name clearly I was the final ACTOR on all decisions.  (worth remembering I was her lawyer)  I had a professional fiduciary obligation to make decisions for her in her best interest, and she knew that.    As one example  I accepted a lower spousal pension in the event of her death to  convince her we had roughly equal life expectancy.  It probably was not true but it made her feel better.   I did everything financial but kept her informed.
Posted: Monday, August 19, 2019 10:10 AM
Joined: 4/12/2019
Posts: 154

Fortunately I find it easy to take charge, and make decisions.  But in our married life the professional demands of my DH always took precedence.  We moved across country for his graduate school (with a small baby), I went back to work so he could afford graduate school, I followed him to a city/job I hated and lived there with him for 25 years, followed him again to Georgia for his next job.  I always had to find my job after we got where he wanted to go.

Weirdly he would sometimes say "You made me do 'so and so': decide to go to graduate school, move for his job, etc."  He's always been an unhappy man, so when life didn't turn out peaches and cream, it was my fault.

I DID DECIDE, last year,  that we (or at least I) would move to this Senior Living Center.  My DH finally realized that I was going without him (I thought DH wouldn't leave our house) and literally cried that he thought I was leaving him.

This was last Fall, and I should have realized his abrupt change to tears when he realized I would really leave, was a clear sign that the memory loss my sons had been warning me about for 2 years were really changing him.  This not a man who ever cried.

So, of course, I said I wanted him to come with me.  That I thought he wouldn't leave the house, which is why I planned to go on my own.

I really wanted to get away from his constant anger, criticism, mocking me, ignoring my needs, etc.  But I also knew we couldn't really afford the place I wanted without selling the house.  And  at bottom I love him, so couldn't really leave him.

The move was the hardest thing I've ever done.  DH was absolutely paralyzed.  He had NO executive function.  I had to order the U-Haul the day before we were to pack everything into a truck.  He wouldn't/couldn't do it.

After two months of depression, apathy and constant criticism of our new living arrangement, DH had a personality change! He lost most of his visible anger, and became much easier to live with.  This new phase amazes me.  I guess most likely it will pass, however.

DH MCI continues to progress, and almost every day I have evidence of that. Alas.

In the future, I will be able to make decisions, of course, but will find it hard when DH disagrees because I've always wanted him to 'be happy' (which of course he never was).  I honestly cannot imagine what the future holds.  I focus on the day at hand.

I read almost ever word everyone writes here in this Topic of the Forum.  Sometimes I am tears, both of sympathy/empathy, sometimes I am amazed at the strength here, and many times I am afraid for my husband.  

Dementia is strong my DH family (mother, older sister, are the ones I know of).  Fortunately I have a strong son, with a strong commitment to family, and who lives 15 minutes away. He's a psychiatrist, as well, so has the training to understand what is happening, and can help me with decisions.

Regards, ElaineD


Posted: Tuesday, August 20, 2019 11:10 AM
Joined: 4/4/2018
Posts: 165

The hardest part of this, becoming the decision maker for me, was just deciding to do it.  Once I decided then I make the decision and if there is a question from my DW,  I just reply: "We talked about this and because of this, and this we are doing it this way.  Don't you remember?" My DW will not remember whether it happened or not.   I also alternately say:  "This is the way you decided yesterday to do it, it was a great idea."   Rick

Rescue mom
Posted: Tuesday, August 20, 2019 12:14 PM
Joined: 10/12/2018
Posts: 1478

It was so hard to absorb the idea that all major decisions and responsibilities are now up to us as caregivers, or at least it was with me. Imnever wanted to be in charge. We ALWAYS talked things over and shared responsibilities (outside my work, of course). 

I often wish for 1-2days when I was not responsible for every freaking thing. I didn’t even like being the boss at work. But there quickly came a point where if I did not do it, it did not get done. It took a couple of catastrophes to teach me that. 

But pretty soon it’s like dealing with your children. You don’t let a toddler dictate your future. They just can’t. Not their fault. They just can’t do it.

Posted: Wednesday, August 21, 2019 7:04 PM
Joined: 6/19/2018
Posts: 95

DH's official diagnosis is still MCI, but he has already abdicated most decision making. We need an electrician and he asked me today why I haven't called one yet. This winter he got up before me. When I got up he was sitting on the coach wondering why he hadn't heard the furnace come on, yet didn't go check on it. (Furnace was dead.) 

For some it may be later, but in our case it is at MCI.

Posted: Thursday, August 22, 2019 6:44 AM
Joined: 4/12/2019
Posts: 154

Dear JJ401,

We too are at the MCI stage.  Nothing like what most here are going through, but still 'weird'.

We recently moved to a Retirement Community.  So we don't have a lot of decisions to make any more, thank goodness.

This week we had 'the box' experience again.  I return to the apartment and there is an open, empty Amazon box on the floor.  DH is sitting on the couch with his earphones on, and I ask "What came in the box?"  He says, "What box".  I say "this box".  He says, 'oh'.  I ask again, "what was in the box and what did you do with it?"  He says, "I don't know".

Then I see a stack of body wash bottles on the credenza.  So I know what came and what he did with them.
Today our elevators were out of order.  I asked DH if the service elevator was also out of order.  He said "we don't have a service elevator."  He had USED this elevator constantly when we moved in last March, and several times since.  
I called the front desk and was told that the service elevator is working, so I sent him down to see for himself.  He returned and said the service elevator is just fine. He forgot that he had forgotten the service elevator existed!

Incidents like this are happening several times a day now.  I'm becoming tense, wondering what's next.