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I’m sorry for you, but if I could say perhaps you could offer your husband more compassion and understanding, and stop expecting something he clearly cannot provide. My sisters dementia came on slowly then ramped up. It wasn’t her fault, and it took me awhile to realize that arguing about her lack of memory was helping no one. It’s scary and really frightening to see your loved lose their memory. One day I took my sister to the grocery store as she could no longer use an ATM card or know to give or receive exact change when dealing with cash. I’ll never forget that day.

As we were heading back to the car she literally out of the blue said to me that her brain is dying., not knowing what to say I just said oh no it’s just a little broken. But, those words are imbedded into my mind, and was heartbreaking, and made me really think and realize how frightened she was, and probably still is.

She is close to 68 years old, and has had MRI, EEG, CT scan, and several mocha/ memory type tests (which she failed all miserably) the MRI showed nothing, and her neurologist said her brain MRI was unremarkable and what he would expect to see for a person of her age.
But neurologist knew and expressed she had dementia, and started her on dementia meds.
Currently she is on LTC living in a nursing home, the facility isn’t huge but she can’t find even her room half the time. Her long term memory is still somewhat intact, but her short term memory is extremely bad.

She is on a plethora of Meds including ariceft, namenda (personally i question if they help anymore) also on Lexapro, trileptal, zyprexa. I’m aware of black box warnings but I believe sometimes the benefit does outweigh the risk.

Your husband doesn’t sound like a candidate for any anti psychotic, but I included because it’s in her list as she also has underlying mental issues.

In so many ways I was frustrated like you seem to be, but if I can offer any advice it would be to have empathy for his situation. Once you come to terms that he really has a serious decline in his memory and probably doesn’t forget things just to aggravate you then perhaps you can learn to expect less from him, and realize he’s sick with a condition that is robbing
you both. Also, I’d find another Dr. for a second opinion.

i have not read all the posts but I should have, I just spotted someone mention TBI, and my husband of 72 has TBI, and PTSD, heart issues and takes a lot of drugs, he also is no longer the man I married but like my sister I see a similar memory decline beginning, many silly things like goes out to mailbox on Sunday for the mail etc. Unfortunately he is adamant that he’s fine. Anosognosia sure is real!

Take deep breaths and seek help now, just start calling until you find satisfaction. Read read read what you can find on the internet, that helped me a lot.

As I just finally read all the previous posts, I’d like to add my sister has also seen four different psychologists, and has also been evaluated by a neuro-psych. All, have diagnosed with dementia.

If your husband does have a form of dementia I highly agree with other posters to get your legal affairs in order ASAP. Durable POA for financial, and a Medical POA so doctors will talk to you, and HIIPA won’t or shouldn’t be an issue.

There is no one stop shop book I’ve found that prepares you for everything you may encounter but keeps notes, dates, and info you find valuable.

Several times I’ve read post from ppl here way smarter then I, often I think
if they could join forces and write that book. Obviously several things would be different because of different state laws, but that too could be addressed.

Im certain it would be a best seller!!
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Emmdee Mar 2020
Thanks so much for this post! Its fantastic, and full of LIFE!

I have had experience of looking after my husband for seven years after his diagnosis with Lewy Body dementia (etc), he was very awkward sometimes, and needed full care with bathroom and feeding. However, we always managed to have fun somehow, and he loved getting about in the car - until he couldnt work out how to get in! I used to utilise a technique similar to how I used to get ponies in a horsebox - lead them round in a circle, then quickly aim them straight in - it worked a treat, both for the stubborn ponies, and also for my confused husband!

You are definately looking for advice in the right place, there are wonderful people here - thanks everyone!
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Has he had his hearing tested? Hearing loss frequently leads to complaints of hearing but not understanding, inability to remember what wasn't heard correctly in the first place, and more. If he has not had a thorough hearing test, I strongly suggest it.

If hearing loss is found, it needs to be treated asap with properly fit hearing aids. It sounds like this has been going on a long time, and some of this might be personality related, but if a hearing loss is found, it is going to take time, patience and practice to get him hearing better. It's a rehabilitation process, not as simple as just putting devices in his ears.

Sonce the other avenues you've investigated have not revealed answers, this bears checking, as I have seen this a lot as a hearing specialist and how much life improves when hearing loss is addressed. Good luck to you both.
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I’ve read some answers, forgive me if this has been offered already. Primary Progressive Aphasia (PPA) is something my mother has and I feel she was experiencing the receptive language problem (understanding incoming language) much sooner than the expressive language signs (word finding difficulties, odd substitutions for words). It just wasn’t as evident to us until I think back to prior events. I used to work with children with auditory processing problems and it’s very similar. Visuals work, but with PPA it progresses to the point they don’t work as well anymore.
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I believe I read and understand what you are saying? I have,had this same situation too a degree with my mother . She is exactly where and what you are saying your husband is displaying . Just for me one thing that helps me reduce my anxiety is realizing that In most cases When finding myself becoming frustrated with her in these moments of her being delusional or in denial or oblivious of a situation.
I Learned too accept and remember that her memory and actions ,reactions of life are stored and processed differently For her at different stages of life from a medical and physiological aspect .
All of our body’s are influenced and developed differently throughout life by many many things, mostly we have control of ,understanding the outcome to our body’s mentally , physically . . Then some influences not so much ,we only experience the result of them too our body’s in later years Of life by our expressions and actions !

For me I must always keep in mind she is different than myself and ageing ,has influenced us all differently we find ourselves becoming like our parents or different in many other ways emotionally and physically than years earlier .
This May sound elementary but acceptance and serenity is truly the goal for myself, and anyone else who experiences this type of behaviour from someone in their life or ourselves as we age !

Keeping in mind that I cannot change her or their memory ,beliefs or lack of memory
of something That we both experienced.
Knowing the truth and reality of a situation You experienced together now is totally in another mindset of that person from what Is factual is so frustrating and disappointing it makes you crazy or can make you very frustrated !
First for me too compartmentalise this behavior and realizing that issues Or actions Surrounding this person or persons is key !
This Allows me too become a way less stressed , and have A more peaceful outlook on dealing with that person or persons state of mind and actions presented from them today, which in most cases is not a socially acceptable behaviour and completely opposite from our view and actions in life today . Leaving us too wonder why are we even socialising, married or a relative of a person that In public or in any capacity you have no commonality whatsoever .
a person and their behaviour , mannerisms you being associated with someone like this today in some cases is totally embarrassing , irresponsible , insulting , demeaning and outright just stupid behaviour of attention or relationship i can focus on and just dropping her and replacing with something else .
These actions and behaviours I am mentioning did not come easy it took a lot of therapy and self inspection (introspection ) of myself because I my case it became a necessity that is how crazy i was becoming ,you don’t have too go to this level just by writing this your way ahead of this hopefully this helps you because for me it saved me from becoming cold and callus towards my mother . less stressed me of all stress and some of those feelings and frustrations of looking for differences rather look for the commonalities
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DonnieJean Mar 2020
I don't know how you deal with that at all. You most definitely are a saint. I hope you get someone to help you out. Thanks for responding.
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First of all, I am glad that you are here.

What you describe sounds challenging, not just now, but all those years of raising children and being a minister's wife while coping with his peculiar behaviors.

As to his current health issues: yes, sleep apnea can cause problems with memory. I hope that he can adjust to the CPAP machine. It may take trying different masks to find what works best for him.

I hear that you are exhausted and angry. It's okay to be angry, it's a normal emotion. You are only human and you're coping with what probably seems like an endless, Sisyphean struggle. And from what you've described, I suspect that the frustration and resentment has been building for some time. So, how are you caring for you? Do you have ways of nurturing or re-energizing yourself? Counseling can be good, although it sounds like your situation makes couples counseling complicated due to his memory problems. Perhaps individual counseling would help you right now.

Most of all, remember to be kind to yourself.
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DonnieJean Mar 2020
Thank you! I am working on pampering me. It's hard because that's not really my nature. I often wonder if his behavior is simply his personality. If it is, he's not the man I married or he did a good job of covering it up. You know there are times when people mess with your head and I have often wondered if he was gaslighting me. I don't know how I would deal with that. To know someone is deliberately attempting to alter your mind is just plain evil.
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You have the patience of a saint.... because him leaving the toddler in the tub alone would have been enough for me to ring his neck.   I am sorry you and your husband are dealing with this unexplainable condition of his that is obviously worsening.  Is it possible it has always been this bad and you were so busy taking care of your children that you didn't have time to focus on all the weird things he was doing?  Most of us do not have the financial resources to go from doctor to doctor but you've got to find someone who will work with you to find an answer.  Maybe you can go somewhere like Mayo to find a "think tank" type neurologist who can figure this out for you.  I wish you all the patience and luck.
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DonnieJean Mar 2020
I've certainly never forgotten it. He's lost his wallet and keys hundreds of times, and his favorite saying is "I don't know". I sometimes think it's just a habit. When I think back, many situations pop up of him doing something off the wall. I am just exhausted and tired and waiting for things to get better.
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Many older firends and loved ones of mine exhibited these same horrible symptoms. However, they never were scatterbrained when young so I am not sure if your husbands problem is the same. In my case, some of my loved ones became completely mentally well again after stopping their prescribed statin and or diuretic. For some , it was too late. If your husband is taking a statin, a diuretic, or any kind of mind altering so called antidepressant, stopping some so called meds may improve him a lot. Howevr, if he has been taking these so called meds a long time and or if his problems are not
'med" related, it may be hopeless.
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DonnieJean Mar 2020
My husband doesn't take any statins or diuretics. He takes Cymbalta, Metropolol, Xyrelto, Aricept, Allegra and another heart pill.
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TRyan to keep your patience while you seek out a doctor whom will listen and help. If necessary, get people in your writing who have noticed the impact of his behavior to write them out and provide to a new doctor. A neurologist would be a great start in care. Preferably someone who deals mostly in the type of impairment such as cognitive issues your husband has with comprehension. Our son 39 is diagnosed with Asphsia, but hearing, UTI and many other factors maybe playing up his issues. Dont stop seeking answers. It is tiring going from doctor to doctor to hear the same old thing. Remember you hired the doctor and you can fire just as easy.
Best of luck.
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Your husband has memory problems but not a diagnosis... and it appears he has had this problem for a long, long time - as long as you have known him. Improving his oxygenation at night should help, but it will take awhile to notice a difference and it will - hopefully - return him to his more mild form of memory problems. Aricept keeps dementia from getting worse, for awhile. If his childhood trauma was accident related, he probably has some scar tissue causing difficulties with remembering. So, accept he has memory problems and always will from now on.

For better diagnoses, please see a neurologist. He can also schedule some therapy classes to help with trying to expand his memory capability or to devise work arounds.

Together, design reminders throughout the home, his office... Maybe he can start keeping a journal/appointment book to remind him of important tasks, appointments... Maybe keep reminders posted on the frig and a bulletin board at this office.

If he isn't able to use these reminders, it may be time for early retirement. Please consider taking up the tasks your husband is incapable of remembering: cooking, paying bills, shopping... and probably driving. Let him help with all tasks he is capable of completing.
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DonnieJean Mar 2020
His parents were missionaries in Africa so he grew up there until he was 18. He has lots of good memories, but also so bad ones from the boarding schools. So there was no physical trauma.

He has seen a neurologist and we like her. She is also a psychiatrist. We will go back and see her and see what she thinks. She is the one that ordered the MRI. It only showed age-related findings.

I am going to start putting reminders around the house. It will keep me from having to remind him several+ times a day to do things I've asked him to do.

He has no problem with driving except he will panic now and then, and he does our laundry and washes the dishes and vaccuums the house and does most of the outside work, but his indurance has definitely gone down in the last 2 years. That is probably due to his AFIB he's being treated for.
Thank you for answering.
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Your husband may have always had some amount of Attention Deficit Disorder and now aging and perhaps some Dementia are exacerbating his problems.
Anger is more common than you might think. Even when the person being taken care of is gravely ill and dying, a caregiver may feel anger at difficult behaviors and negative verbal exchanges.
I am glad you found this forum and can share your story. It helps to articulate your frustrations. A Caregiver Support Group might be helpful, too, if you find one near you.
Good luck to you. Let know how you are doing.
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DonnieJean Mar 2020
I'm working with a counselor on my frustration and anger issues. I was brought up in a family where you just picked your feet up and went on with life even if you were sick. My husband is the type that will allow me to do everything for him while he's feeling poorly and I don't always want to. He didn't use to be that way. I find that the situatioin allows me very little time to take care of me. The counselor has helped me understand that it's okay to help him but not at the expense of me and my health. I know he is terribly frustrated too. We are going to have to work together or this "thing" will eat us alive. The first thing I have to do is see a lawyer and get our affairs in order just in case his memory continues to deteriorate. Thank you for your prayers and advice.
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Fist of all, I pray that God will surround you and your husband with His Presence and Peace - and that you'll find the right doctor(s) and get the right diagnosis. Is your church part of a synod or convention? There should be resources available for both of you through your church. Don't hesitate to ask for help....it's what the church is commanded to do for one another!
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I'm so sorry you are going through this! I know you are burned out. There is something seriously wrong with your husband. It could be a lot of things: medications, ADD of some spectrum or feeling lack of confidence. My husband was losing his memory before he died. It's easy for us to tell you to be patient, but it really burns you out! I miss him and wish I had been more patient, but did the best I could. Do be your husband's advocate and don't let MDs brush it off! Try to remember that pastors generally are expected to do too much anyway. His fear of not remembering could also make it worse. I hope the Lord will continue to give you His strength to do what needs to be done.
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he might have vitamin deficiency. that happened to my husband. just a thought.
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Am a retired Psychiatric Crisis RN . I think time for a thorough neurological work-up- spouse should agree.Need to rule out a host of things that can be fixed ,or,if not,then remediated early. Godspeed.
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DonnieJean Mar 2020
That is my plan so far. It just takes so much time waiting around for appointments. I feel he is slowly melting away.
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Hi, I agree with others on you need to take him to at least one appointment to see what he has. I care for my husband (age 60) to. I can relate to can't do this anymore. It seems like as time goes by, it gets a little easier however never wanted. Your husband has a memory issue, and mine is not caring to communicate with me, and he is able to. Get him diagnosed is my suggestion.


Hug to you,
Unitetogether
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Sounds like FTD, frontal temporal dementia, to me, my husband has that. It's under diagnosed, and much more difficult than Alzheimers for the caregiver. Do as much reading as you can on this and see if you see a match. Particularly with the loss of understanding words, or speaking challenges.
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Unitetogether Mar 2020
HI, Can I ask you if someone with FTD could have lack of appetite? Do you know?



Thanks
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Your are probably not going to like my answer... years ago my wife and I would argue over the smallest things, it just drove me crazy dealing with the daily fights until I finally came to realize it wasn't her being combative, it was her Alzheimer's/dementia. It wasn't her fault it was my fault. I suggest that you get consoling and join a group with other caregivers. You need to take some of the responsibility for the day to day needs of your husband. Sorry to be so blunt.
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Enoughisenough Mar 2020
I totally agree... we can't leave our husband or wife because its difficult. personally that would be very selfish... God doesn't leave us because we are not perfect. Love is very important and Consider yourself.. would this person want the husband to leave her in her delima...?
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Get a spiral notebook and write brief reminders, explanations in them for your husband. This helped when I was caring for my father. I would see him refer to the papers several times to remember and process the information. Pictures and flow charts helped also.

See if you can find a geriatric psychiatrist for an evaluation. They know specific testing and also age appropriate medications. It seems some of this might also be a long standing disorder which he can no longer compensate for because of additional age related declines.
I would encourage you to get both help in the home as you are on overload. Additionally find some counseling support, perhaps at the same location that you have your husband evaluated. You need someone with a clear understanding of the psychological issues of the person you are caring for.
We all change through out our lives. It is a loss, and part of what you are feeling is grief.
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I always had a phenomenal memory. I seldom documented the computer software I designed and developed and wrote every line of code. I got a virus that was going around my office and was very sick for 2 weeks. After that I lost my memory- long term short term- everything. I could only remember pieces of things that didn't make sense. I had to stop working because I could no longer function. I went out on medical leave and never had a job after that. I had brain tests cat scan, eeg. It seemed like I had Alzheimer's. But tests did not show this. Years of doctor vists.
What it was, my brain stopped going to sleep at night. I fell asleep all the time but woke up tired every morning. I was in a fog all the time and couldn't remember anything. Went to many doctors was diagnosed eventually with CFS. I still have it to a lesser degree. Common after a viral infection. The key thing for me to get my memory back was to get back to sleeping normally. It took me 6 years. I never had a sleep problem before this. I read science books to learn what the brain does to go to sleep. Brain needs sunlight in the day time and then darkening light in the evening to trigger the chemicals in the brain for sleep. So I went out every morning and sat in the park near me. In the evening turned off the tv and lights at home. Also worked on meditation to try to get to delta wave sleep. Over the years, to my surprise, my memory returned. Little by little, not all at once. Now my memory is very good especially for age - 78.
You said he has sleep difficulties and I can tell you that can cause memory problems. He must have had some of this when you met him. Things tend to get worse as we get older. Doctors don't seem to take not sleeping well seriously. I know it was part of my problem. I don't know if a sleep study would help show the difficulties he has. Please stop yelling at him. It doesn't work. I was living alone while I had my stuggle with not knowing what I was doing and it was scary. I made some systems to deal with life to help myself. I was glad that nobody saw me a mess. I wrote on my computer every day what I did that day. Writing things down helps. A plan for the day step by step. Lists in detail. Shoping lists, to do lists in detail. I would suggest you communicate, briefly, in writing. You know he has this deficit. Maybe he should retire from his job soon. He seems also to be easily distracted. Not sure if that is part of the same problem. It could be. Do you know if he was ever exposed to toxic fumes? There are so many things that can harm our brains. It is too complicated for most doctors to find the answers you need. I would think that if his sleep quality could improve you might see what other problems remain. It could take some time to see the improvement. I was surprised by what happened to me and that improving my quality of sleep brought back my memory and my ability to think. I wish you all the best with your efforts.
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get him to a geriatric neurologist or primary care MD for a
mental exam (don't tell him this word) He probably is getti ng
dementia
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My husband has totally changed also.. It is very difficult. his behavior is childish, negative, nasty.. He has been diagnosed with dementia.. Yes it is VERY difficult.. at times he has drank alcohol to ease his uncomfortable behavior. he knows things are not right.. people tell me to put him away.. etc.... but when I was little my dad always said Do to others what you want them to do to you... I look at this situation and say to myself would I want him to leave me in this condition or put me away when I still could function... NO.... then I remember the commitment at our marriage... For better or worse.. then I have spent a LOT OF TIME reading God's promises to Help me and give me Wisdom.. its not easy and very tiring at times. but I look at his eyes and my heart melts... my advice is ask God to help you.. Your husband needs you...
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No one is the person he/she was 40 years ago!
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Sounds like a heart wrenching problem. Men in general don't like to talk about their sicknesses, problems. However over the years hopefully that would go away within a marriage that's lasted this long. It too seems like he is scared of his mind leaving him, he probably notices things but too scared to verbalize it, and if he has had this problem most of his life he does have a impairment of some kind, mentally, emotionally, physically. I would like to say your concerns are real however to find out really what his condition is would take professional testing. Is there anyone he's close to that can help you convey these problems your are experiencing with him and get him to go get some help quickly?
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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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I went threw a year of worry about My husband befor i found out what was wrong. I found out by reading a book written by the daughter of a dementia pation. When we went back tothe doctor
She said they don"t like to usethe word. That was 2015. He may have 2 things wrong
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You truly need to find a good Dr , and get some answers . My husband recently died from ALS , which is a brutal disease .The caregiving aspect was overwhelming . I’m so glad I was able to have him at home , I know he would have done the same for me .We were married 52 years , and no , we weren’t the same people we were either . Our love grew stronger , not less . If you really feel you can’t cope , make plans for his welfare .His needs deserve to be met by a loving , and willing caregiver .Maybe his kids , or family will step up to take over .If you do it grudging, your helping no one . Good luck , you sound like you might need it . sorry this happened to you , and especially your husband .
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I would suggest having your husband evaluated by a neuropsychologist. This is a person who can evaluate for memory,attention,insight, judgement, cohesion of thought, and brain injury. They administer a battery of tests, review the results with both of you, and offer recommendations as well as treatment needs. I also would suggest a comprehensive medical evaluation.
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I would get all financial papers in order & take over bill paying. See Elder law Atty to update wills ..get poa & health proxy. You will need these important documents. Don’t pretend that there’s nothing wrong because it will get worse. Did he get full blood work up & UTI test? What’s his diet like? Is he sleep deprived? Go back to neurologist for more extensive tests. Or get second opinion. Hugs 🤗
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A neuropsychologist or maybe neuropsychiatrist can test him and give you an idea My husband has ftd and Alzheimer’s and there’s no cure so my thoughts are just make him comfortable as u can if he’s diagnosed w either My husband was president of his union at work and very intelligent and can no longer even put glasses on his face. I knew a long time something was wrong before he was diagnosed Good luck
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My answer to you and your husband's problem doesn't cost you any money..,A person who sacrificed His life for all of us is ready to save you both, by His love for you both he can heal the sick and give strength to the weak.,all you have to do is accept Him and believe.,confess your weaknesses.to your Heavenly Father. My husband and I went thru alot of the things you both have been..without him, we never could have made 65yrs of marriage,go to a good Bible teaching church..and save your marriage and learn a new beautiful life..
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