PTSD and Cognitive or Memory Issues
I was asked what it is like with cognitive dysfunction and memory issues being a huge part of our everyday lives. So let me explain…
A prime example was a few days ago, Craig looked at me and asked, “So what project are you working on next?” I sat there for a second and realized what type of day it was going to be, not that that is a bad thing, I don’t view it that way anymore, but it told me what was in front of us. It was one of the more severe cognitive days. To Craig, it was just an honest question because to him he did not know.
See, last week we talked in depth, over multiple days about my next projects. We talked about what I wanted with these projects, what he wanted, threw around different ideas of likes and dislikes, how to move things around, where to put things, etc. I am always working on something, so that part seems to stick in his memory, it’s a part of my daily routine to work a little on something. I am also doing some extra Spring cleaning before starting some projects, as well as have a couple of outside projects I am working on getting to. So we had talked about these.
So, I’ve spent the past week preparing, a little each day. But to Craig, it just did not “stick” in his brain what we had talked about. This is something that has been a part of our lives for years now, we are used to it and know how to manage it.
The cognitive problems can lead to repeating things, not understanding that something has taken place, or something was said, the confusion, frustration and/or anger that comes with it, misplacing things, not recognizing the body’s signs of being hungry or not knowing if he has drank fluids or not… or believing he has when he hasn’t, same with showering, brushing teeth, etc, medications have to be given to him not just taken… for safety reasons, not recalling people’s or pets names… that includes my name as well. There are also many safety protocols we have in place.
Movies, something that is no big deal in reality but, 😉 do you know how many times a person with cognitive issues can watch the same movie and not realize it? Not recall any details of the movie? I believe we are up to 13 times for the same movie, for multiple movies watched at home. How do I respond? I just go with it! I don’t mind re-watching movies anyway.
So, those are just a few of the many things that are a part of daily life for us. The best way I can describe it, is he has to have guidance with many things each day, things that he can’t or does not know to do by himself, things that many people don’t even have to think about to accomplish.
I have actually documented things, to see if there is any rhyme or reason behind different things, because with PTSD as well as depression, there can be concentration issues and lack of focus due to anxiety, flashbacks take one away from reality while they are occurring, dissociative episodes are the same way, and other things that some things may be related to other than true cognitive or memory issues. There has still not been any rhyme or reason discovered to why some things stick and other things don’t when it comes to true memory or cognitive issues. Some things or bits and pieces of, flow in and out of memory. Then some things are just not there at all any longer.
These things are a part of both of our everyday lives, but there are days that are worse than others, really just like any other symptoms or medical conditions. There are going to be somewhat better days then there will be the really bad ones.
Don’t worry, I’m not by any means throwing Craig to the wolves here lol! Craig likes for me to write about things we go through, with total honesty. He says it helps him. So, I’m just bringing an understanding about how life is different for us, as well as many others. By the way, Craig approves what I write about and many times will ask me to write about things so he has kind of a record of things to look back on. 😉
(Just to note here for Craig… he uses my writings as a guideline to help with cognitive issues and as reminders. 😉 I am working on re-flooring my son’s bedroom, painting inside, forming a ground level stone area to sit the outside fire pit on… so I don’t have to keep moving it to mow or have to weed-eat it, and re-doing the backdoor stones that have shifted.)
I do want to state up front, I am using the term “cognitive” more than “memory” because doctors are honestly not sure what to call what Craig experiences and cannot answer what term fits best. He has multiple diagnoses along with PTSD… overlapping symptoms, and I have basically been told to back off from using the term “memory” as much, which is what doctors have always used as well, until they are able to sort out exactly what ALL he is and has been going through the past 11 years. “Cognitive dysfunction” is a term that has been used since day one no matter what other terms have been additionally used (“memory loss” and “memory impairment, which long term memory has been affected just as short term memory has been), so for now we will stick to “cognitive dysfunction”, which has been described as dementia like symptoms he experiences.
I have been asked, “How do you handle this as the spouse?” and “What is this like for the two of you?”
I think the simple answer is, I handle these days with extreme patience. Back at the beginning though, patience was not something that was understood as needed. It was the quick comments of, “You already said that“, “I don’t understand why we are discussing this again“, “We already talked about this“, “That never happened” or “Why did you do that?“, “You said you would do… but did not.“, “Why did you go here when you said you were going there to take care of…“, etc. It was pretty frustrating, not only for myself, but for both of us, some situations came across as untruthful when in reality to him he was telling the truth, not recalling things lead to arguments.
I guess the best way to describe days like the other day, which was based around conversations and what I have already accomplished around the house and am working on, is they are like deja vu to me. Like the day is replaying itself, which in a sense it is, to me at least. I know we have already gone through this (whatever it may be based around), or something similar, but outcomes are not always the same. The fact is, this is life, this is what it is, and we go with it and make the best of each day.
I do prompt Craig at times, or give some small amount of information, if the situation is correct for it (in other words, as long as safety is not an issue), it’s a way to try to help him and his brain function, work at recalling things or part of things, and at times can help to a certain point. The brain is like a muscle, and it does take exercise, as well as this also helps spark the neurons in the brain. So the prompting is important to do, but there is a limit if higher levels of frustration and PTSD start stepping forward, so there has to be a healthy balance.
I don’t know if you would call it an advantage or disadvantage really (the repeating things). At times it is easier the second or third time around because I kind of know what’s coming, what his thoughts were last time, or where things lead, especially with conversations, so I know how to respond or better yet, how not to respond. But yet on the other hand lol it’s coming again and I know it will be a day of listening and having the same conversations again, having great patience, and understanding/empathy of what he is going through, and just going along with the repeat of the day, which doesn’t really bother me anymore. It took time for me to understand what he goes through in order to know how to respond or to know what I need to do, how to handle what he experiences. I’ll be honest, at times it’s still frustrating, but it’s something I understand and accept so I can also let go of frustration easily if it comes, so I can help him through the day.
But to Craig he does not comprehend that something has already taken place, to him it’s new. I think the toughest part for him is knowing me so well or seeing how other people react to him. There are times that he picks up on my pause to answer… looking for the right words or me already knowing it’s best to just listen and not reply, my/others facial expressions or lack of at times, me sitting too quiet while I listen again, in general my/other’s body language.
See, just because he has cognitive problems does not mean he is any less intelligent. Sure, he has lost part of what he had learned, some things take longer to accomplish, or he has to look up how to do something now, but he is still intelligent. When he picks up on something it’s now an instant “We already talked about this, haven’t we?” or “That already happened, didn’t it?“. He can many times put those pieces together even though whatever it or the situation is, for lack of better words, is gone. Then at times he gets frustrated, irritated, with himself and tries to recall things. That leads to a lot of negative thoughts towards himself which are not good for him… the “Wow did that make me feel stupid“, “They really looked at me like I am crazy“, etc. He can’t help or control his cognitive function, he tries though. I’ll give him a big “good job” on that one, he always tries with everything.
We have a lot of days where we will sit and just talk, he’s learned to state “I am just really lost today”, express to me how he is feeling which in turn helps me up front know how to help manage the day. There are many times where he will ask me to tell him about a photo, an event, what he did yesterday or what he had for dinner the night before, etc. Or, if I mention something and he has that blank look on his face I will just go ahead, second nature, and tell the story to him or what went on based around whatever my comment or his was if i already see lack of recalling is frustrating him. I learned to read his body language too, so I can tell when there is a “blank space” there and it needs something to fill the gap. We learned to talk and communicate, which has made it more manageable for both of us. I don’t view it as we have settled into a routine, I view it as we always try new things and use what works best.
Craig and I really work as a team. We have had doctors state in writing “His wife IS the other half of his memory” (oops there’s that word). We have had doctors state “He can’t make it without your help.”, which I have been his full time “official” caregiver for over three years now. We have heard all sorts of things, honest statements of facts. But even so, there are many that frown on this, they feel it causes him to rely on me too much. Fact is, they just don’t understand, at least not yet, what his disabilities are like and how we do things, our rules/boundaries we have for each other, and that we do what we have to in order for Craig, as well as we as a family, to be able to function. This view and lack of understanding from others is probably one of our toughest battles, but at the same time we have had this as a part of our lives for so long now, that majority of the time we just let things or comments roll off our backs, so to speak. Negativity from others just can’t be a part of life with battling what we do to step forward each day.
I watched Craig fall into the deepest hole there is when cognitive dysfunction, PTSD, etc. became a part his life. It took time to pull him out of it, and honestly it still pays a huge toll on him daily. But we learned how to manage it together the best possible, basically what he could/can not honestly manage alone. We have those who don’t understand that Craig goes through different things now, that if he is going to spend time with you, without me or someone from our home around that understands how to manage things when they come, there are things you need to know, there are ways of doing/saying or not doing/saying things. There is an overlap in symptoms which does cause life to be managed differently, and that cannot be dismissed.
We have been told in the past that we are co-dependent on each other. There have been ones concerned that it was unhealthy. Which is not the complete truth, which was proven, but we still went through the accusations of what comes with this type of disability being at hand. Not to state this in a negative way, but I can function and manage life on my own, independently… which is healthy for me to be able to do. Craig could/can no longer do that. I’m not saying that to sound mean or like I don’t care, it’s just a fact and what comes with this type of disability. We will never lose hope that things can get better for him, he and we will always try, but on the other hand we are not blind to the facts either, it has been 11 years and a lot of professional help. There is a different type of bond that does form, how could there not be? But co-dependent, as in a negative aspect of the term, no that’s not a fitting term in our case.
But, there is also the humorous sense or side that comes with this type of life and disability. Humor is important and healthy in the right situations. Due to the cognitive issues, Craig does not recall what he likes or does not like… especially foods! 😉 If it is on his plate or I fix something, his brain processes it as “I must like that” and he will eat it. He now eats a lot of healthy foods that he did not like or would have never eaten before! Again, those body signs come into play, he will eat something then recognize the grin on my face, it’s hard to hide the grin. Next thing that comes? “Do I like this or is this a new food you gave me?” My response 😉 “Looks like you like it to me”. 🙂
We did also go through the kids playing on dad’s cognitive issues when they were younger, and mom here had to put a foot down to it. If one of them was in trouble, had something taken away, were told they couldn’t do something, etc. they learned rather quickly that they could wait for mom to be out of sight and ask dad if it was okay to do something, etc. Of course dad would say “Sure”. So, there became a lot of “What did mom say?” over time. Now, with the kids, Craig is still included in everything, decision making, and we talk about things regarding the kids. It’s important even with the cognitive issues that he remain involved, it’s important for him, his self-esteem and self-worth, as well as good for the kids. Now, will he recall any of it later? Normally not but that’s OKAY!
Bottom line is, cognitive dysfunction or memory issues, no matter what the reason for it is, it’s tough. There are a lot of things that come with it. I will tell you that, and Craig will tell you that, it’s just a fact. But, there are so many things and ways of learning how to live with it, learning how to manage things differently, and continuing to live and work towards positive things. I still love Craig the same, I still view him the same ways as I did before his disabilities. You never lose hope, you never stop trying, and you remember to still live. Life is just simply different than what others view as normal or what life used to be like for us. And hey, some things you get a second chance to try again. 😉
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