My husband's PCP performed a cognitive test in office during a routine exam and my husband did not do so well. So the PCP referred him to a neurologist who performed a SLUMS test. Husband scored 25/30 which is mild cognitive impairment. Before the next follow up exam I sent the neuro a letter asking her to be CERTAIN in her diagnosis and please rule out such things as HF Autism, depression, narcissism (his mom is a narcissist), normal aging and forgetfulness, or other possible causes for his low scores before labeling him with dementia. At the follow up, the neuro said she wants the comprehensive 4 hour exam done so she can be more sure of her diagnosis. We are still waiting for that appointment to be made and I am trying to have it expedited.

In the meantime, my marriage is on the rocks. Every time my husband forgets something (which is fairly often), needs to "get his bearings" when we are out driving, forgets to run an errand I asked him to do, doesn't check his phone for texts and voice mails, forgets a conversation we recently had (often) he gets very upset and accuses me of wanting to have him committed, making things up, seeing things that are not there, etc. Never mind he did poorly on both in office cognitive exams! He accuses me of having dementia because I make lists (chores, errands, shopping lists) and he claims if I did not make lists I would forget, but he refuses to make lists to help him remember things. (I am a highly organized person and have always made lists to stay organized.) He says that no one should worry until the day he is out driving and gets lost and cannot get home. He does not even realize that, when that happens, it will be too late for him to help me plan for our future and it will all fall to me. We have only been married 5 years! He is 8 years older than me. I am so upset and heartbroken and not sure if I can take this much longer. He won't let me tell his kids he is being evaluated and I have no one to talk to here. Counseling did not work out for me. I am the one fighting to assure a correct diagnosis and not just a label of "dementia." He cannot see that an early diagnosis will either remove the dementia suspicion entirely or help me to help us plan for the future if he does get a dementia diagnosis. I am simply exhausted. Has any other spouse been through this??

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He knows something is wrong, does not know how to deal with.....I went through this with my wife, flare up arguments lover trivial nothings, or perceived problem was failure to recognize or I ignored the warning considered an divorce to end the mess.
Un paid bills, over/under cooked meals, clothing from washing machine to dresser etc........then had testing.
This journey has been over 13 years, but once YOU accept that what ever the person does or says is no longer revelant for YOU to care for YOU have to find a way to adjust to ongoing, never ending daily stress of owning YOUR own nursing home, YOU are the CEO, DR. RN. CNA, department head of Kitchen, Finance, Janitor etc. With One Employee.....YOU.
For me go keep sanity found a understanding lady an had an affair, which lasted for six years.....but then she came down with cancer and now I have two ladies that I have love for that both need attention and care.
Stress level almost off the chart......but had to recognize that they were the two that require the attention and help......understanding this made it easier to cope with......lost Ann Sept. 2018....
Was this good for me or bad.......I dunno, but have no choice to press on.
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Reply to Treadmill

Going through it now and wondering if I want to continue on this journey. He will acknowledge some things - left water on or stove on, fridge door open. Other things he blames me - misplacing things, didn't remind him, my fault, etc. He refuses to consider he might have a problem! He had an MRI that showed brain shrinkage but has not had definitive neurology tests done. Driving is getting worse. He refuses to do a will or make end of life plans. It's a day to day thing. I sympathize with you.
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Reply to katiekat2009
Monica19815 Dec 5, 2019
I am so sorry you have started this journey also. Does your DH have a neurologist and are they going to do further testing? How long have you known something was going on? I cannot imagine not having all your legal paperwork in place at this point. Have you consulted with an attorney about that? If a neurologist would tell him point blank that he has a medical issue and tells him exactly what that issue is, do you think he would be more accepting and cooperative? This uncertainty stage is so stressful because, without a firm diagnosis, living forward is impossible.
My hubby was easier to get along with. That was one of the "this is wierd" signals that started us on the road to diagnosis.

I would tell him that you are going to tell his kids. The only reason not to had better be good. What will he do? be mad at you?

I want to warn you, make sure you are taking care of yourself financially and health wise. If you have only been married 5 years the kids might come after the material things. I had that happen to me after 20 years of marriage. I can't warn you enough, take care of your finances.
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Reply to MaryKathleen
Monica19815 Dec 3, 2019
It is so heartening for me to hear that your husband was easier to get along with! That makes me happy for you on that level. How old was he when he was initially suspected of a cognitive disorder? I am secure financially as we gave each other "all" almost from the beginning, especially me being much younger. But tonight, for the first time in 40 years, since my dad died of colon cancer and I became, in that moment, solely responsible for my mother, and havr been responsible for "someone" from that day until now, I feel broken. As if, after all these decades of being strong and responsible, and taking care of everyone else in my life, something inside of me has broken in half...and cannot be glued together or repaired. It scares me to feel this way. But I suspect many of us have...and do...feel this way.
Well, got to involve the kids to see and recognize what you are dealing with......appears that this stage like mine was very trying, mentally/physically as my wife was fighting to understand her diminishing capacity and striking out to me. My failure or ignoring signs was leading to divorce.......then had to accept the total marriage responsibilities when realized that she was not longer competent or responsible for her actions.
This started in 2001-2, took over all household functions, 2006......been on this dementia journey since, now in Hospice....past year.
It is a nightmare journey.......suggest that you find companionship to keep you sane.
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Reply to Treadmill

I would be willing to bet your husband is terrified of a diagnosis of dementia and is lashing out if you point out any lapses on his part. I know both my parents fear losing their minds more than death or a painful illness. Both of them have watched friends decline into dementia.

It sounds too like you are a doer and planner and your husband is a wait and see-er. When you have personality difference in place it makes things even more challenging. You want to be as best informed as possible and your husband wants to turn a blind eye to the situation until a crisis. I understand being a doer, I am one too, so is my Mum. My brother and Dad are in the wait and see camp. It is crazy making to try to make any sort of plans with Dad and db.

I think you know that regardless of the diagnosis, you are going to be the planner in your family. Your husband just does not have the capacity for that.

So next steps:

Get all your paperwork in order, this includes Wills, POA, Health Care Representative agreements etc. Keep in mind your husband does not have the capacity to be your POA, Executor etc. Who do you trust to act on your behalf?

Get your name on all the accounts for Transfer at Death. This includes the deed to your home, if you are not on it.

Make sure all the vehicles are in both names.

Double check your insurance policies are they up to date, House, Life, Vehicle etc.

Update your list of investment and retirement accounts.

Learn about Medicaid look back rules in your state and review any gifts or larger sums of money that could be questioned.

It is going to be a huge job and yes, it is going to fall on your shoulders.

If the first counselor did not work out for you, find another one. You are going to need support through this.

I would go against his wishes and talk to the kids, after you get all the paper work in order. There is nothing worse than being told after there is a crisis, oh yeah, Dad started testing for possible dementia 6 months ago. What! and you did not think to tell me?
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Reply to Tothill
Monica19815 Dec 3, 2019
Thank you SO much for the wonderful reply. One thing made me chuckle...we my husband has an "incident" of memory lapse I do not point it out, I stay silent. It is HIM that makes a big deal of it..."Oh, I bet you will have me committed now because I forgot/lost something/got confused..." or whatever fits at the timw. I say nothing other than to correct him (only when I must)..."No, we are going to the pet store, not the grocery store" or "We should have turned left back there, not right." All our papers are in order and my kids are secondary POA's. However, my husband is POA, Executor, etc. for his 92 year old mom...he is an only child...and he does not get that we have to know his own situation in order to make sure she is taken care of (which I will NOT do).

One reason I will not tell his kids is because we do not have confirmation of anything other than "mild cognitive impairment" until he has this comprehensive test. If it turns out he has a personality disorder or Adult ADD and not really a cognitive or neurological impairment, there is no sense in getting his kids involved (and they will only go tell his ex wife and everyone else).

Thanks again for your great reply and suggestions. I appreciate it.
Reply below...
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Reply to Monica19815

My wife (Peggy) mentally fighting or attempting to cope with her memory functions, our marriage was in trouble.
Perhaps one does not wish to recognize or ignores the signs, as I did.
But then had to take over all household functions in 2006 and it has been a down hill nightmare journey since then.
What makes it bearable for daily requirements/demands as a caregiver, to keep ones mental stability and function?
As I found a caregiver that was taking care of her mother(Ann)......we became one, in 2012.....this allowed her and I to meet our challenges, her mother passed away in 2014...and I lost her to colon cancer in 2018, and my wife entered Hospice.
Today we are struggling along, have two ladies that come in twice a week for me to shop and get out of the house.
Yes, an affair was very therapeutic for my mental/physical health.
2017-18, were two demanding/stressful years, as I was needed by both, my wife and Ann....but managed to meet the challenges.
An today, have no idea where or what the future holds as I continue on this dementia treadmill.
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Reply to Treadmill
Monica19815 Dec 3, 2019
Thank you so much for sharing. My heart breaks for all that you have gone through and are still dealing with. It truly is a "treadmill," isn't it? It is so exhausting in every way. I am hoping that, once we have a diagnosis (if he even agrees to take the test), I can get all my ducks in a row and find my way forward, somehow....

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