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Partner developing memory issues
Hello everyone, I am new to this site as I look for some information, advice, and support with my husband's changing memory issues. I have read many of the posts and appreciate the sharing of stories and the compassionate help provided. This may be quite long, but here goes!
My husband is 76, I am 74. Over the past three to four years, I have noticed his occasional unusual memory lapses, which I had hoped was normal, age related memory loss, though I was concerned. For instance, we have walked our dogs on the same daily route for many years, and several trees were cut down around the corner from us. We love trees and were sorry to see them go. A week later, I commented on how I missed the trees, and he said there had been no trees there. This was a very different kind of forgetfulness in that he simply had no concept of there ever having been trees there before. Life moves on, and occasional things happened, like forgotten conversations. But in recent weeks these incidences have become rapidly more common, almost daily, and my husband gets frustrated and angry with me as I try to figure out what is going on. A few days ago, he told me "Hannah's car is parked outside". I said " who's Hannah?" (we don't know a Hannah). I looked puzzled and after a few back and forth questions and answers, as he got increasingly frustrated with me, I realized he was talking about our neighbor Rachel, who we know well, socialize with, and talk to often during the week. When I asked if he meant Rachel, he looked confused and said, yes, it is Rachel...who's Hannah? Also I'm now regularly seeing forgotten conversations about anything from casual to important, forgotten by the next day.
I was able by chance to talk alone with his PCP, who was subbing for my PCP for a check up I was having. He asked if I wanted to get my husband in for testing, but I'm not sure if we are there yet. For one thing, he denies that has memory issues, and insists that I am wrong. It is also the case that this is not all the time, and he frequently has a better memory than I do. Some days are fine. But I don't forget conversations or the names of people in our close circle, or to get the chickens in at night, which he has done for 30 years.
I am feeling anxious and with a sense of dread as things are quickly changing. I have a lot of lifetime experience with dementia.
My grandma and mother-in-law both developed dementia and both suffered for 15+ years. I was not the primary caregiver but the daughter of one and daughter-in-law of the other, and was a support, shoulder to lean on, and compassionate listener for most of my 20's and 30's, and then my 50's and 60's. My husband was primarily responsible for his mother's care for the last years, although she was not living in our home. Both ladies followed a similar path, becoming verbally abusive and physically aggressive and violent, to the extent of causing injury to family, caregivers, and other residents in memory care. It was indescribably hard. And I know you will know this.
My support is limited, our few remaining friends are older than we are and are having significant health, and beginning memory issues of their own. They need our help. We are emotionally close to our daughter but she is 400 miles away with a new baby, and I know this is not her burden to bear. I know I need to learn to accept what is happening, but the realization is only just hitting me, and based on my past experiences I am feeling stressed and terrified.
So that is my story. Thank you for reading and listening. I so appreciate that you are here.
J.
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@msmarymac
Good afternoon. It is very common with epilepsy to have issues with memory, especially after having a seizure. @santosha Can you share your experience with memory loss? Thanks!
I would also say talk to his neurologist about the issue of memory loss, just to be on the safe side. It could also be a side effect from seizure medication.
Kerry
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4 Reactions@ehdog
Like others have already mentioned memory issues are a very common problem in epilepsy? Not only the seizures themselves that can cause problems, but seizure medicine as well. Many epilepsy people also have aphasia which is a language disorder. It can cause people to lose track of words, sentences, and phrases.
I've had epilepsy for 60 years and after I was woken up from an eight month long induced coma I had lost every memory I ever had and to this day none of those memories have ever returned.
Repeated or uncontrolled seizures can lead to cumulative damage.
Newer generation drugs like Lamictal and Keppra are much less likely to effect memory.
What medications is he taking for seizure control. Are his seizures controlled?
Take care,
Jake
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5 ReactionsGood Morning @ehdog
What a caring thing it is to be seeking answers for and helping your boyfriend.💜
As many have already mentioned, memory difficulties are quite common in people with epilepsy. They can stem from several factors: the type of epilepsy, the frequency of seizures, and the medications involved.
I can share from personal experience: I have temporal lobe epilepsy with mild mesial sclerosis (scarring) on my left hippocampus. The hippocampus is the brain's primary center for forming and storing new memories, so this type of epilepsy tends to affect memory significantly. I sometimes struggle to recall words, names, films I've already watched, and even experiences I've lived through.
How do I cope? Working together with my neuropsychologist, I've developed compensatory strategies — memory aids, organizational techniques, and external reminders — that help me manage day-to-day life. Now that my seizures are better controlled, my memory's also improved. I'm currently on Keppra, which tends to have a lighter impact on cognition than some other medications I've already taken.
One thing I'd gently encourage: be patient and kind when your boyfriend doesn't remember something. It can be quite painful to hear "don't you remember that?" from someone close — it adds a layer of embarrassment to an already frustrating experience.
Do you know what type of epilepsy your boyfriend has? And has he ever had a neuropsychological assessment to evaluate his cognitive and executive functions more fully?
Since you're already part of Connect, I warmly invite both of you to join us in the Epilepsy & Seizures Group on Connect, where you'll find plenty of support and people who truly understand epilepsy.
Chris
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5 ReactionsIm 67. My mom had Alzheimers so Im terrified. Finally went to neurologist who says my memory is ok.
First, I discovered my 38 year old son does this too. He has a busy high pressure job, it actually relieved my fears somewhat.
Get a good " brain book" that has fun puzzles and identifies what part of the brain that puzzle is using ie long term, short term, executing functioning, retrieval etc.
Stress obviously affects memory and of course so do the 4 sleep stages. Repetition helps, I drop my car keys right inside my hallway in a bowl, etc things like that help. Try a few things, examine your sleep, your stress level, your diet etc. If it doesn't improve your short term, go to your doctor or a neurologist. You might find you're in a normal category in this busy crazy stressful times.
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3 ReactionsI’m soooo lost in my own mind and can’t find the way out into the living.
I need help and the ability to feel alive once more.
Please help
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3 ReactionsI am 57 and have had memory issues for several years now and it scares me because my maternal aunt had Alzheimer’s and my mother passed from dementia. I have been working with a psychologist, a psychiatrist and my family doctor to try and figure out what is causing this. At first, I wasn’t being heard by my psychiatrist or Family doctor, but finally my psychiatrist referred me to a neuropsychologist fur an assessment, as I have had one from another source, which I can’t remember, and they said I had mild cognitive impairment memory. I won’t be able to see the neuropsychologist for several months and my memory is slowly getting worse where I can’t remember words, names, events experiences, and at first I thought it was caused by my having ECT treatments.(numerous.) 15 years back. How does one know if they are having seizures? I am running out of ideas as too much may be causing the memory loss and it is affecting my depression and anxiety to the point that I don’t wanna live with it anymore. Please advise as to what I could do or methods of treatment to seek out.
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1 Reaction@saskatchewanlady i’m not sure if this will be helpful but a doctor told me if you’re concerned about your memory you don’t have dementia. I try to keep that in mind for myself. I also just try to reassure myself that everybody gets forgetful at times. Stress aggravates everything so I pray that you will not worry so much.
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3 Reactions@saskatchewanlady
I believe first and foremost you need to get your anxiety and depression under control since both may be causing memory issues. They can cause concentration issues that lead to poor formation of memories.
If you are having seizures you'd likely know it. If you're having tonic clonic seizures, you would end up on the floor or ground somewhere most likely be sore perhaps have a bitten tongue and/or cheeks, which would be very painful perhaps lose control of your bladder and/or bowels and sleep after. If you're having absence seizures, you may not be as aware of your seizure since you just stop doing whatever you're doing one second and a few seconds later or a minute you would just resume doing what you were doing previously with no memory of the incident so it's often difficult to tell unless someone can see you having one and may say you look as though your daydreaming, if you're having focal awareness seizures, you would be aware or perhaps have an episode of déjà vu, if you're having focal impaired seizures, you would lose consciousness most likely and if you had an aura prior you may see/hear/taste/smell things that aren't there or at least know somethings not right. But a lot of seizure medicines cause memory issues as well so hopefully your not having seizures.
ECT can cause memory problems also but I don't know if they can be permanent, they are usually only temporary.
What do the doctors say regarding causation? Have you had any indication of seizures? Had a brain MRI or CT or an EEG. Although seizures would probably be better diagnosed with a history. Half the tests for seizures are generally normal but normal tests don't rule out seizures.
Take care,
Jake
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2 Reactions@joannlakes55
Good evening Joann,
I am so sorry you are feeling so overwhelmed. What's going on? Let's talk about what's got you stuck in your own find. There are so many great people here that want to help.
Kerry
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3 Reactions@joannlakes55 How can we help today? Can we point you to care near you, help you find a support group, or offer encouragement?
Do you have someone living with you who can help get you started?
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