DW Recent MCI diagnosis

robbio49

Hello all, I am beginning my new life as a caregiver for my DW.

We are retired, both 72 and married 50 yrs this year. 

I reached out yesterday to this wonderful resource. And called in to talk with Care Consultant. She mentioned this site so here I am.

DW has not been formally diagnosed with dementia, yet our family doctor and a friend who is a doctor too, indicated to me DW has the disease.

Arguing with my DW has become too common over the last year or more. DW also suffers from ADHD. She takes meds for this currently. 

Reading the posts today has been a God send. Although DW still drives and can function fairly independently, I see the gradual changes that you all have mentioned. I am new to forums, but this one is so comforting to me going forward.

One questions for you all. 

Is it important to get that formal diagnosis of dementia via assessment? I am aware there are different types of dementia. And this could indicate how to treat it going forward.

We have gone through one MRI to see if her behavior is due to a physical issue, i.e., brain tumor. It was negative. Not sure if we need to go for a second one?

From reading the posts here and from talking with a CareConsultant I had a rude awakening.

I try to help my DW get through her days by tracking them on a calendar, using the cell to remind her to take meds and food journaling. She says she will do the calendar and the journaling, but she never does it. I want her to help herself.

What I have found out from you all and from my brief CareCounselor talk is this is the disease.

She is not able to do this. This was a shock to me. I saw it as her procrastinating about it. I was getting angry because she was not doing what she said she would do. Got my eyes open on this.She does not want my help and has a very stubborn, independent nature. Don't we all.

Well, this about all I can say right now. Thank you all for being here and sharing your stories.

The good news is my DW knows she is changing/aging and some days gets really angry. Other days she just says...oh well. " 

I will enjoy this and treasure each day going forward.

David J

Robbio49-

Welcome, sorry you have to be here. but glad you found us. When DW started on this long strange trip, I wanted to put a name on it:  Parkinson's, no. Parkinsonism, yes. Brain tumor/ yes, but not the cause.  MCI progressing to dementia? Yes.  Alzheimer's? First no, then yes.  After all of this, the exact nature of her disease is not important.  Care of DW is the same.

I am assuming that at 72, you have wills, end of life directives, durable power of attorney, etc.  If not, better see a Certified Elder Care Attorney.  Now that your DW is progressing into dementia, some of the assignments on those documents may need to change. Even though we did this while DW could still understand and sign the documents, I now need to update.

You didn't mention children or other relatives close by.  As someone who doesn't have this support, I am keenly aware of the benefit to the PWD and caregiver.  I have learned to ask for help when I need it, and take help when it is offered. 

There are caring people here who offer gems of advice and council. I'm sure some of them will pipe up now.Dave

Ed1937

Robbio49, welcome to the forum. Sorry you need to be here, but as you now know, it's really a good place to be when you need it.

I'm giving you a link that should prove useful. This will give you a good idea where you are. http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf  

The advice you received about the certified elder law attorney (CELA) is right on the money, and something you should get done soon. If you wait too long, you will surely be sorry. Many, but not all, CELAs will give you the first visit free of charge. You can verify that when calling for an appointment. Here is another link to help you find a CELA. https://nelf.org/search/custom.asp?id=5427  

One reason you might want to know what type of dementia she has, if any, is because some medications work for one type, but should not be used for others.

You will surely have many questions, so post anything you want. Just about any subject is acceptable, from cooking recipes to sex, and just about anything else. Best of luck to you in your caregiving.

Trish F

Hi Robbio49,

I'm sorry you are part of this group but so glad you ARE part of this group.  I've found much comfort and information and hope the same for you.  What we are going through is awful, for us and our LO's.

Regarding your question about a specific diagnosis, it's important to trust in your doctor and share any and all information.  That will a very helpful basis for medication.  My DH went through all the tests, written and otherwise (brain scan, etc.).  The bran scan did not show Alzheimer's but based on the written/verbal/psychological tests done by a specialist, there is a definite issue.  Although not a specific diagnosis.  He as dementia and beyond that, for me, it doesn't make a difference.  

My DH started with generic Aricept and that helped for a year give or take.  He now has had Seroquel (generic) and Nemenda (generic) and I'm not sure about the spelling.  These medicines were prescribed by his neurologist based on the behaviors and symptoms my DH has been exhibiting: anger, sundowning, all the basic things.

Each change is so hard - my DH and I have been married 39 years in April and I never would have thought this would be how our golden years would be spent.

Please stay active with this form - you will find people who care and understand.

Trish

Cynbar

Welcome, as others have said. You will find a wealth of experience and concern and support and advice here. The role of dementia caregiver can be a very lonely one as you move through a world that has no idea what a struggle this can be. Here you can come to bond with those of us who are also living it. It will be invaluable to you, especially in your darker times.

I am impressed that you are already grasping one of the biggest hurdles to get over ---- her brain is broken. She is not deliberately ignoring you, she cannot remember and cannot process. It will totally change the way you interact with her, and learning this now will help you immeasurably. Avoid arguments with her at all cost. Don't try to reason with her or explain that she has dementia , she likely will think she is fine. Don't try to make her admit that she is wrong and you are right. All of us here have done this., it was particularly hard for me to get past. The goal is to keep her as calm and comfortable as possible. Most of us use "fiblets" at different times to diffuse a situation or an argument. For instance, my DH will insist he has to get ready for work (he's been retired for several years.) Instead of explaining that, I just tell him it's closed today due to the virus, and he buys it. You are still early in the process and may not have to do much of this yet, but it does sneak up on you. Your early understanding will be a big help as you move forward.

I want to share one other thing. Read everything here, education is crucial. But remember that not everything you see will happen to your DW. Some PWD will get aggressive or wander, for instance, but not everyone does . This can be a hard journey at times, but will be easier if you're prepared for anything.

Iris L.

robbio49 wrote:

DW also suffers from ADHD. She takes meds for this currently. 

Welcome, Robbio.  Please be aware that many of the signs of ADHD are also signs of dementia.  The pathology of dementia usually develops over years, and the subtle signs may be attributed to other diseases or conditions in the early stages.  It is very important to undergo a thorough medical and neurocognitive diagnostic evaluation to rule out medical diseases and dementia mimics.

You already know that medications cause side effects.  Psychoactive medications used for ADHD and all medications, prescription and non-prescription, should be checked for cognitive and memory loss side effects.

Also, please drive with her and see how she performs in traffic.  Driving is more than operating a vehicle, can she respond instantly to traffic hazards?  

Iris L.

ElaineD

Dear Robbio,

I understand.  My DH has MCI, but no diagnosis.   He is in denial, and won't talk about it.  Unless I manage everything, I don't think he would get to any appointments, get his prescriptions, or anything.   

He sometimes asks me three or four times in a day what time is his appointment.  I can tell him several times that I have an appointment, and when I tell him we must leave now, he says "Where are we going?"

He's also in what I call the "WHAT box?" stage.   A package arrives while I'm out.  I come in and see the empty box.   I say, "What came in the box?"  DH says "What box?"  

It takes several steps to find out what came in the box and WHERE he put it!  Sometimes he throws the box out before I come home, so I don't know anything has come and where he has put the contents until I happen to see something I ordered already on a shelf.  

This drives me crazy.  But I know this isn't something he's doing to me, he really doesn't remember.

It was over 4 years ago that our grown sons started telling me "Dad's losing it".  I had only noticed an almost impossible increase in his negative personality...and THAT turns out to be part of the dementia:  personality changes, loss of social filter, apathy, and loss of executive function, among others.  He exhibits all of these.

He tells his doctors that his memory problems are typical for his age (81).  His memory problems are NOT typical for his age.   He has several family members with vascular dementia and I'm sure that would be his diagnosis.  But he is in denial.  

My DH was a fantastic biomedical researcher and professor at a Medical School, so he should know what is happening, but he doesn't.

My husband is MY caretaker because I am severely physically disabled  This week I was diagnosed with Macular Degeneration in both eyes, so will probably become legally blind in the next 5 years or fewer.

So not only can I NOT care for him physically, I will lose him as my caretaker as we both become progressively disabled.

On this forum there is so much wonderful support, great advice and information.  I manage to keep some semblance of sanity because this is my safe harbor.  I can complain and rant, I can read the marvelous posts here and know that I am not alone.

Welcome,  Elaine

CStrope

Robio, we started with an MRI, and then saw a Neurologist for cognitive testing.  The Neurologist was great at showing us various slides on the MRI and explaining how it was showing the brain atrophy on the left side of the brain.

The scoring off of the cognitive testing helped, because it put a number and a range to things.  He scored 18 on a scale of 30, with "normal" being 27 or 28.  That helped me put things in perspective.  I had been saying that most days he was able to convince me that he was fine and I was just imagining things were not okay, but the cognitive testing helped me grasp that everything is not okay.

It also helps because they may base any medications on the diagnosis.  My DH most likely has either frontotemporal or Alzheimer's. His regular doctor started him on Aricept after his MRI, and the Neurologist added Memantine. Since he has also been on Adderall and Paxil, we will now have an appointment with a psychologist that will analyze all of his medications, new and old, to make sure everything is working appropriately together. We were told that we could request a PET scan if an actual specific diagnosis was wanted, but we opted not to.  At this point it is not important to us to know exactly what type of dementia it is, as long as his neurologist has a clear idea of a treatment path.

I hope this all helps. Check back often and ask anything you are wondering about.  Or, you can just come back to vent about a bad day.  Sometimes that helps more than anything.