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.
Thanks
Hug to you,
Unitetogether
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.
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.
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.
Best of luck.
'med" related, it may be hopeless.
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.
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
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.
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!!
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!
My 86yo mother, now in a nursing home, was in a severe car accident at 18 in which everyone else died. She was thrown from a convertible and she was in the hospital for 6 months with broken everything. She was not a good mother -- not very loving, quick to judge and impossible to be around if things didn't go right. I've only thought about this connect to a TBI in the last couple of years. Too much story here to recount.
I just did some googling and a couple of sites said that an MRI doesn't always pick up a TBI. One said this: "Because microscopic injury to the brain may be a cause of problems, however, even MRI may not be able to detect any abnormality in a patient with TBI."
It's just a thought. I'm sorry you and your husband are dealing with this.
I was thinking if there is a Dyslexia for people with reading problems there has to be something like that for auditory problems.
I also thought of ADHD as I think I also have that but when I was a child it was called..."you're not paying attention and doing your work..I know you can do better"
So I think further testing with these things in mind might help even if it does not lead to a diagnosis it is 1 or 2 more things that can be ruled out.
I also have to wonder was he in the service could this possibly be due to chemical exposure?
Also, you mentioned Aricept. The medications for dementia can slow progression of the disease, but do not reverse it. If it is helping, you would not improvement attributed to the drug. Sorry.
I hear your frustration, and it is so difficult. Please consider seeking counseling to assist you in dealing with this situation. There are many faith-based counselors, and some main-stream ones that do not advertise themselves as faith-based. Inquires will help sort that out.
Mild cognitive impairment or MCI is NOT dementia, but can be the forerunner to dementia. Please note that not all people with MCI develop dementia. It takes very regular testing to gauge when a person has slipped from MCI to dementia, particularly when they have the capacity to showtime, or put on a good act to try to fool a geriatricians testing process. In my mothers case, she would practice for days in advance of her appointments. Although her scores were progressively worse the doctor could not see the crossover during those appointments. You can imagine her surprise when just weeks after a test my mother went into respite care for a fortnight and on the first night was immediately recognised as needing to be in permanent care in a memory care unit.
Dementia is very challenging and very difficult to accept, both for patient and carer. Diagnosing dementia is not an exact science so the best we can do is take the advice of medical professionals who have experience in this field. The choice is yours and your husbands. You either accept the diagnosis or you find the funds to doctor shop to only come up with the same diagnosis that preceding doctors have made.
Has your DH ever had his auditory processing tested?
Is it worth a diagnosis now? Maybe not. Are there other symptoms now on top? Maybe? A sudden change actually sounds like dysphasia (from minor stroke?)
With my son, I have to have his full attention to have a hope of communication. He is more focused on visual things so I try to add hand gestures or props too.
Sister is not visual! House a jumble of clutter as she cannot see it. As soon as she puts something down it blends into the background & becomes invisable. I believe this is also a sensory issue, sort of visual processing 'difference'. Sounds like your DH!
You are ruling out what you can medically - I think that's all you can do. Spouses are going to notice any difference way before any scans or tests pick things up - this must be so frightening & frustrating for you both.
I suppose what I would do to make life better right now is to add a bit of silly to lighten the mood "bit of Mondayitis today... and it's Friday..". And look for things he is still good at, washing the car, cooking, whatever it is that he can still feel productive & valued. Experiment with communication. Wave the shopping list around when discussing it. Jingle the car keys when explaining you have to leave in 5 mins for that appointent. See if visual stuff helps?
He has other Learning Disabilities so it took until he was 15 to get as far as we have in learning his disabilities.
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.
This is his website for his clinic https://www.healthybrainmd.com/conditions-we-treat