My husband is not the man I married 40 years ago. Any advice?
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.
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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. https://www.macleans.ca/news/canada/i-am-mine-this-is-what-alzheimers-is-like-at-41/
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.
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.
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.
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".
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.
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.
DonnieJean,
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)
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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