My husband (67) has always been what some people refer to as scatterbrained, being late for plans or appointments, forgetting to pay bills eventhough he had plenty of money in the bank. When I first met him, I couldn't believe what a mess his house was, mostly because of too many animals. Because I was blindly in love, I paid no attention to these personality traits. But after we were married and had kids, I couldn't help but notice some of the things he did that popped up a red flag. He once left our 3 year old in the tub alone in the house while he went down the road to check on something. I was gone to my mothers. I think that was the first actual event when I realized he had a strange way of thinking. As one event after another occurred, I realized after our daughters left for college, something was seriously different. He had trouble remembering things I told him I needed at the store even if it was just 3 items. He is a pastor and the whole congregation is starting to notice his short term memory is lacking. He forgets the order of the service eventhough he has the church bulletin right in front of him, he skips verses of the hymns, and he repeats part of his sermon. He has seen a neurologist and had an MRI, and nothing showed up. He could not repeat the 3 items on the recall test, back to the doctor so she labeled him as having mild cognitive impairment. However, I don't think that's what it is. He says he has always done that when put on the spot. We get into argument daily because of his inability to comprehend what I tell him. He says he hears me but just doesn't understand the words. I often have to repeat things 4 and 5 times. So as you can imagine, I am completely exhausted, angry, hurt, disappointed and heartbroken. He is a very intelligent man and is well traveled. I suspect he had problems like I have mentioned as a child but his parents never talked about it. Ive just heard hints of his absent-mindedness. His thyroid is slightly low and the doctor is watching that and he also had some childhood trauma. Also, he has sleep apnea and is on his first week with the CPAP machine. Supposedly sleep apnea causes memory loss and confusion. He has been taking Aricept for 2 months, and I see no change at all. We are now seeing a marriage counselor but he often forgets what was said in the sessions making it impossible to do the work the counselor gives us. We do not have the money to go from doctor to doctor to doctor to find a firm answer on what's going on in his head. I feel like if you have any kind of memory problem, you are labeled as having Alzheimer's or Dementia right off the bat. I don't know exactly what is wrong with him, but I cannot go through this much longer and it's driving him crazy. He says he is terrified of losing his mind. Of course, who isn't. I welcome any comments or advice. Thanks.

Your concern is very clear in this post.

I am reading that you do not want him labeled as having dementia because he has always been somewhat forgetful. But it sounds like his behaviour has progressed beyond being forgetful. He is unable to do his job properly anymore. He is unable to retain new information or learn new skills and is losing his old ones.

Did the neurologist do any testing beyond the MRI? Were you given a bunch of forms to fill out stating your observations?

Mild Cognitive Impairment is another way of saying Dementia. There are quite a few different forms of dementia Alzheimer's being just one of them. They can present and progress differently.

There was a series in McLean's Magazine in Canada a few years ago following a young couple where the husband was diagnosed with early onset Alz, he was just in his 30's.

This is scary uncharted water for the two of you.

So what do you do next week? Both of you need to update your Wills if needed, put POA for finances and healthcare in place. You will need to have someone other than your husband be your Executor and POA as he does not have the capacity to fulfill those roles.

You need to have a good look at your finances and figure out how you can survive without his income. It is only a matter of time before he cannot lead a service and he certainly should not be doing and weddings or funerals. It is one thing for the congregation to notice his slip ups, it would be devastating for a family if he messed up a wedding or funeral.

Is your housing part of his job? If yes, you need to think about where you can live. If you (not he) wants to stay together, then you may want to look at a community that has levels of care ranging from Independent Living to Nursing Home. He will progress through the different care levels ahead of you, but you will still be close.

You will need to have a conversation with the Church board, or whomever is in charge and discuss what will happen moving forward. They will need to hire a new Minister at some point. They will have to make sure there is another officiant available for weddings and funerals, baptisms/christenings too.

This is not going to be easy. It will be hard on both of you, but you will bear the brunt of the planning and care giving.
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Reply to Tothill
DonnieJean Mar 13, 2020
At first I was very frightened and I panicked thinking he might have Dementia/Alzheimers. But with him working 3 jobs, we saw very little of each other so I didn't notice his absentmindedness getting worse. So when he retired, I was blown away. Our church is small and we've addressed this situation. They've said he does a fine job for a small church out in the country. And it's hard to find a pastor for country churches. I have a lot to do and I have to do them in the right order. Thank you for your advice.
Isn’t the brain so fascinating? One screw not tight and it changes the person’s personality and behavior. My husband has dementia and aphasia, causing him to be angry a lot. He has more outbursts than I care to count. He was a physician and he treated ppl with dementia, and now he has dementia. One of life’s ironies.

I think you should get him properly tested for dementia. Once that is documented, get your legal affairs in order when he can still sign the docs naming you as his PoA. It is easier to talk to other ppl, especially insurance companies, when he has been medically tested and you have a legal document with you. Without that document, it is HARD to get anything done.

As much as you want, you cannot turn back the clock. Believe me, I tried! You just have to accept reality and march forward.

I am sorry you are going through a very difficult phase in your life.
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Reply to Worriedspouse

Tothill's answers are good ones, and Barb's suggestion to get a neuropsychiatric evaluation is also important. If you are on Medicare, that should be covered if the primary care MD will refer you to a neuropsychiatric consultant.

My spouse is 58 and has always been absent minded, disorganized, easily distracted and a poor listener. Ask him a question and he can't answer because he wasn't listening. His mind is elsewhere. I am 100% convinced he has Attention Deficit Disorder. He had a neuropsych exam because he was being fired from his job of 14 years, with some of those issues being the cause. His neuro exam and MRI were also normal (I read the MRI study to be sure.) But the neuropsychiatrist told us that if Attention Deficit (ADD or ADHD) were not diagnosed as a child, my husband didn't have that. I vehemently disagree with that since I was not hearing about ADD in the 1960s, which is when he was a kid. So no treatment but I'm pretty sure Ritalin, Adderall, Concentra or the like would have helped him a lot. But my input and observations were not part of his evaluation, so the psych heard only the filtered history my husband gave.

Your mention of the thyroid was a big red flag. My husband has a family history of hypothyroidism and some other autoimmune disorders. I noticed his mental sharpness declining dramatically a few years ago. So husband finally saw his PCP who did thyroid testing. His result was practically off the chart (TSH over 130.) That is severe hypothyroidism (thyroid failure.) Hypothyroidism can cause very significant cognitive impairment, and requires thyroid replacement medication. Your spouse should be tested about every 3 months and medication adjusted until he's in the therapeutic zone. Followup testing and adjustment of medication can take a while but it's critical to getting that back in order. Hypothyroidism can cause a host of medical problems.

Treatment for sleep apnea might also help some of the symptoms. But get the thyroid addressed. Perhaps an internist/endocrinologist acting as the PCP would be best.
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Reply to BBS2019
BarbBrooklyn Mar 7, 2020
ADD or ADHA CAN be diagnosed in an adult IF the symptoms are lifelong. There does not need for there to have been a diagnosis.

My husband was dxed as an adult with ADD; his inattentiveness was a lifelong problem, but there was very little understanding of those symptoms when he was growing up in the 50s and 60s. Once he was getting an adequate dose of meds he said to me "If I had these meds when I was a kid, my life would have been entirely different".
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Then be there for him. You will not be the wife that he married. Best thing is to keep him busy. Give towels to fold. Then mess them up and give back. More towels to fold. Give copies of pictures. Not original because he might cut up, etc. ask memory questions. Video tape it. It is your history. Take care. This time will be over. Take advantage of everything. You won’t regret. Even the good and bad. Also the memories and confusion can be caused by infection, UTI. And /or imbalance of something. Electrolytes. Sodium. Cholesterol can cause stroke. And sodium level can cause symptoms.
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Reply to Daughters12345

I don't think you need to go from doctor to doctor. Your husband needs a comprehensive neuropsych evaluation. Part of that is a thorough neurological exam with brain imaging. The other parts are a neurocognitive test (several hours of pencil and paper testing) and an examination by a psychiatrist or psychiatric nurse practitioner.

After this testing, there should be a debriefing session during which the neurologist gives extensive recommendations for what sort of care is needed, adjustments to employment expectations and lifestyle changes. Medications should be discussed.

Did the neurologist not address any of those issues?

The sort of testing I'm talking about should be covered in full by Medicare.
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Reply to BarbBrooklyn
hickoryhunt Mar 10, 2020
You describe exactly what my husband's primary care doc sent him for at a nearby university 8 years ago when my husband was 63 - it was all day and we came back a month later for results.
Here I am, in favor of suggesting a possible diagnosis on a forum, and yours was a good one.

My suggestion is high functioning Asperger's.
People who know, or diagnose this condition can point you in the right direction, after just one interview. M.D, psychiatrist will do.

At your husband's age, he could have been skipped over for a diagnosis of Asperger's (on the spectrum of Autism) due to the fact no diagnosis was available until a certain date. (I forget the date).

Dr, Tony Atwood, an autism specialist, had missed his own son's diagnosis!

A book can help you cope with the behaviors you have mentioned
above whether or not your husband is diagnosed, because the behaviors can drive you nuts. imo.
"The Other Half of Asperger Syndrome" (Autism Spectrum Disorder): A Guide to Living in an Intimate Relationship with a Partner who is on the Autism Spectrum Second Edition Kindle Edition
by Maxine Aston (Author), Anthony Attwood (Foreword)
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Reply to Sendhelp
DonnieJean Mar 13, 2020
I have never thought much about Aspergers. I know very littl about it. And the symptoms don't quite match up with his behavior. Of course, I could be wrong. Thanks for responding.
It is time for a specialist to do more testing. Anger does not help a person with memory loss. Your husband is scared of losing control.
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Reply to Pr0f3ss0r

Getting my husband (now 66) out of the ministry two years ago was one of the best things FOR ME that happened. I no longer had to stand beside a man that I did not respect, did not trust, did not even like; I no longer had to put on the "happy pastor's wife" smile while our home life was miserable. I had planned to tell my adult children when we were all together at Christmas that I was leaving in January. I was done after 40 years of marriage. And then a week before Christmas he got two dementia diagnoses (one based on MRI -- FTD, and one based on how miserably he failed the MMSE, mild neurocognitive disorder). I can go back almost thirty years and see signs and symptoms that things were wrong. I should have spoken up much sooner. I won't go on but I just want to say this:

It is time for your husband to stop pastoring. Selfishly I say this for your sake. You cannot continue to keep up appearances, it will break you. It did me. Do not let yourself continue to live in two worlds, the real world at home and the world you step into on Sunday mornings. Remember that God is El Roi, the God Who Sees. Nothing is hidden from Him, so don't try to hide it from others.
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Reply to graygrammie
Judysai422 Mar 10, 2020
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I get that you are frustrated and tired. I don't get your anger and resentment. You say you have been married 40 yrs. You made a promise to him for better or worse. He must be terrified. Sounds like he may have something going on in the brain for sure that Drs. Just haven't found yet. I once dated a guy who had some of the same symptoms you discribe. Drs couldn't find anything that caused the odd behaviour. Then he started having seizures. Bad ones to. So scary for both of us but I'm glad he had them otherwise we never would have known what was going on with him. Because of the seizures Drs were able to find that he had tumors that hadn't been seen before. He was slowly dieing and needed to have brain surgery to remove them. We were lucky. His chances of coming out of surgery alive were slim and if he did make it Drs said he would have some brain damage. He lived and at first he had problems talking walking and understanding things. But after a while he came back. With all the love and support and courage to over come his injury he made a full recovery. It was amazing. So I believe if you don't give up on him and find some help through this, you would be surprised at what you will find. Your man doesn't want to be this way. He can't help how you feel about it. To disgaurd him is wrong unless you never wanted him in the first place.
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Reply to Riverbunny
DonnieJean Mar 13, 2020
I appreciate your opinion and honesty. Exhaustion can do many things to a person. Frustration can do the same. I am doing the best I know to do. I may have come off as noncaring but I treat him that he never has to want for anything. I'm not sure that is good for him though. Me being tired and wishing I had some Calgon to take me away, I think is normal now and then.
I just want to tell a story about my sister in law who is a beautiful person and who has worked hard all her life, raising two capable children and have beautiful grandchildren. She endured a cheating husband for many years and one who was jealous of her accomplishments. One day he got sick with diabetes, stroke and could not communicate eventually and labored when he walked. One time we went to visit the family and went to see my brother in law during his illness. I thought to myself why is she doing this "She would bath him and dress him so well, with nice crisp shirt and pants creased. his hair combed and he was handsome- she would several times a week take him for a ride in his favorite vehicle play the music he loved and bring snacks along and drive along the countryside and he loved those times she did that although he could not verbalize anything, he just had a smile on his face. When she needed to go somewhere for personal needs she would always have a caregiver someone she felt he would appreciate which was a family member." She never treated him the way he treated her. He eventually died and she buried him I would say royally and I thought she was a person who truly believed in the scriptures to forgive those who sin against you and recognize his sins were great to others but not too great for her to show the love that she did. When it was over she was satisfied that she did her best while he was sick. I'm not saying this is the thing to do for your love one but remember God can give you blessings and a peace of mind also for your acts of kindness.
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Reply to Carol2324

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