No one listened to me when I noticed the others were sick…

trigger warning: death, Alzheimer’s, manic episodes, hospitalization

Have you ever been so in-tuned with the people around you that you notice things about others that no one else does? And then when you bring it up out of concern, no one listens to you? If yes, I have experienced this two significant times in my life and in some ways, it caused a domino effect of problems that could have been avoided if anyone listened to me…

I want to start of by saying that this is one of the topics that has come up in therapy for me a couple times. According to my psychologist, its a form of hyper-functioning and likely a trauma response that has led me to be more vigilant when accessing people’s behaviours that cause warning bells to me and no one else. I honestly have not pin-pointed the full reason for what may have been the causes of this hyper-functioning but I can say that I have become more mindful of how much I am taking in from others because I can over-do it real quick, often putting myself so far on the backburner I lose myself. But, I want to be clear that I am so grateful for the awareness I had in these moments, even though no one would listen to me to prevent the outcomes – I feel peace that I did as much as possible to help those involved.

Now, where were we…

Alzheimer’s is a B*tch

When I was just out of high school, my friend and I made a road trip to our family cabin. We were going to be the only two there, alongside my grandparents who, at the time, stayed there all summer. I don’t remember a lot from that trip, but I do remember it was the first time in a while that I had been around my grandparents for more than a few hours in a long time, and there were very noticeable changes in my grandmother’s behaviour from the last time I had been around her 24/7.

As the days wore on, we noticed that we were eating the same thing over and over, and when we looked in the freezer, there was a surplus of frozen burgers. To the point that when we went grocery shopping, they somehow came back with more. Not that my grandmother would cook anything super fancy each night, but repeated meals were not really her style as long as I can remember.

On top of that, she was very protective of the kitchen, we were not allowed in her domain to cook, not even as a treat to thank her and my grandpa for allowing us to stay with them. It was odd because, while my grandma often did the cooking, she wasn’t usually one to turn down the offer to cook for her.

As I said, the details were a little hazy that year, I can say for certainty that I knew something was wrong, and I had to say something to my mom. So when we returned from the trip, I recall talking to my parents about it and they sluffed it off as me making things up. They ignored my concerns and chalked it up to nothing unusual.

I believe it took another few months for my parents to start noticing anything weird and by then we had to drive my grandma all but kicking and screaming to the doctor to find out she had Alzheimer’s. We moved her into a new place with my grandpa, all the while finding further evidence that this had been going on for a long time. Where she normally kept a spotless house, there were magazines laying about the floor as if she placed it down and didn’t have anywhere else to put it and kept adding to the piles, there was food in the freezer that had been there for years without being used, meanwhile there was a lot of the same item bought more and more recently. Anything that existed of the tidy, organized woman I knew, was missing. We later found out that my grandpa had been taking them to the A&W down the street for food often enough that the people working their knew my grandparents and their order.

My grandparents were proud people, and they did not like to speak up when having difficulties. They were always there for us when we needed them, and unfortunately it was not easy for them to accept the same in return.

My mom, extended family and I spent a couple summers with my grandparents at the cabin where we would fly them in and be with them. We realized more and more how much my grandmother was going downhill and it was downright scary at times.

I remember one night, she got up to go to the washroom and I was in bed in the room nearest to the bathroom. I recall laying in bed reading when I heard a scraping of nails along the wall outside my room. Suddenly the door creaked open with a large enough crack for her to peer in. I was scared speechless because I didn’t know what she was going to do. At the time, she had been making some uncharacteristically violent comments and lashing out, so I sat there making eye contact with her, not moving and waiting to see what she did. Eventually she closed the door and went to the washroom and back to bed.

The next year, we had a similar trip to the cabin which ended up being even more… unexpected. My grandma was having fewer and fewer moments of clarity and the other moments were filled with mutterings of uncharacteristic violence, or lashing out at whomever did something to set her off. I am not kidding when I say it was almost like the woman’s state with her illness from the Green Mile where she would sit there swearing and muttering horrible things; it was as though another being had possessed my grandmother.

I have been attuned to the spiritual enough to say that when I saw her walk through the door, it was as though some black, tar-like demon was perched on her back causing her agony. When she was herself, it was gone, but when she had an episode, it was as if her face contorted to take on the sharper and darker features of the demon, that her words of malice were that of this creature eating her piece-by-piece. I could see the shifts in her from moment to moment, see the shadows that clouded her features every time she slipped into that persona.

I saw what many didn’t see. So when she passed later that week, I was shocked it happened so suddenly since I hadn’t experienced, nevermind seen death, but I was well aware that there was nothing of her anymore. Her spirit had found peace and I was so grateful it had, purely because I did not want her to suffer any further. I think I will designate an episode about this experience later so I won’t go into further detail here.

What I wanted to get out of this story was the fact that I had noticed it, and while it was not preventable, I was ignored and we could have maybe caught it sooner and created more comfort in my grandparents lives.

Manic, but not manic enough to notice

About a half a year later, I was working at my part-time job as a bartender after school, and my uncle showed up to visit. This was when I started wondering if there was something wrong. Now, for some people, this wouldn’t be an unusual thing to have happen; many family member’s visit their other family at work, but mine didn’t. After nearly two years of working at that job, and he had never visited me once. So, when he showed up, unannounced and started acting more boisterous than I had ever seen him, I was immediately on edge.

He claimed he had come to visit before picking up his partner from the airport, or maybe it was he dropped her off – I am a little cloudy on that part. Either way, I knew he still had to drive at some point to get home. Even with that plan, he decided to order a drink and started getting really friendly with the people around. He was cracking jokes, loudly laughing and, in some ways, interjecting himself into conversations. From my view, it was as if he had already been drinking and was losing control.

I was on edge the entire time. Something was off and I wanted nothing more than to not have him there with me while I was working. I was uncomfortable and it was like the hairs were standing up on my arms and neck, a level of warning that I hadn’t experienced often. Although everything ended okay that night, and he left just fine and got home fine in the end (either from the airport or directly from the bar) I knew something was horribly wrong.

You see, the doctor had decided that the medication my uncle was on at the time was possibly shutting down his kidneys and rather than weening him off and monitoring his reactions, she took him off cold turkey. So his manic swing was a steady increase and then a spike as the meds left his system, and that was about the time he visited me.

Now, I told my family about this, but again, no one listened to me. I was concerned because, while I hadn’t seen my uncle when not on his meds, I did know what the signs were because I had studied biological psychology recently and had covered his disorder. For the next many months, he continued to get more manic, running amuck through the city late at night, often just going out and not coming back for hours without anyone knowing what was going on. His partner didn’t share the information of his new behaviour with us until it was too late and my family didn’t notice much when we were all in his presence to say anything.

One day, he ended up getting arrested. And for some reason this part is completely blocked in my mind of what went down to have this happen. I want to say that his partner ended up having to call and get him tracked down or something and the only way it worked was to get the police to knab him. In his manic state, there was no reasoning with him. The only way to check him into the hospital was by force.

Now, months had gone by before he got arrested. If I recall, it was approximately six months before he was hospitalized, but because we let it go on too long before intervening, he was too far gone to prevent any significant time being monitored. He was so far lost in the mania that it would require many months to bring him down safely with the proper meds, and another many months to a cumulative two years for him to be released from the hospital as a functioning member of society again. It cost him years of his life and he has never been the same.

I would say, of the two examples, this one hurt the most. The amount of anguish that the outcome caused my family could have been reasonably avoided. I have often been caught up in the what-ifs of the situation. What if I could have intervened and they just increased his meds again? What if he didn’t have to spend two years in the hospital? Would he have a better life now?

Honestly, he is okay now, balanced an living on his own and able to drive and live his life. But he was not able to go back to work, the electric shocks he suffered while in the hospital (I don’t know enough about this to know exactly what the procedure was) has left him with a slow uptake and processing of conversations, not to mention the fact that he has had to learn to reintegrate himself into society with more support than one would want as an adult. There are just so many things that could have been prevented if the family had been more receptive to my observations.

Lessons

After both of those instances, I have come to terms with the fact that I did my best for what I could in the situation I was in. I repeatedly brought up my concerns with those who could make the decisive actions, and I monitored each person as best I could as a young adult. I truly feel like I could not have been any clearer with my communications. So while being ignored has bothered me, I know I did everything I could on my side to make an impact on the outcome.

Now knowing that I have a tendency to hyper-function and therefore remain hyper-vigilant about other people’s behaviours, I do question whether I will find out the source of my tendencies to do that. I suppose there is more diving to do there to find out what parts of myself to address. However, I have learned that I could not force people to see what they were not ready to see. The thing is, all of the signs were there, and looking back, every single one of my family members tell me they knew, but I think that is a coping response for themselves because I know for a fact that I tried to convince them all for months that things needed to change, to no avail.

I know that my trauma response to be hyper-vigilant has made me an anxious person in many other aspects of my life too. Honestly, a lot of this frustrates people around me because I am either repeatedly questioning intentions or trying to get people to see things that only I can see. I am learning that there is nothing I can control in these situation except myself. I can choose to do, control my own responses and monitor my own feelings around things, but I cannot expect others to take that on because I wish it.

Unfortunately in the instances above, the situation involved someone else getting negatively impacted more than potentially necessary. I am sure it is bound to happen again because I can feel the small shifts in people so significantly that its tough for even me to believe what I am sensing at times. This mostly comes into play in my relationships where my intuition sets off the alarm bells that something subtle has changed, but its tougher to discern when you are involved more intimately that way. That is what I believe was going on with my family – while I was able to maintain an objective view, they were not and the subsequent delay in their understanding was because they were too close to the problem to see it.

We all experience this, so I cannot truly fault anyone, I just have frustration for the potentially different way things could have turned out. I am aware that if the path had not gone that way, that things did work out differently in those situations above, that maybe I wouldn’t be here writing today. Perhaps I would not have gone through the series of lessons I have to be able to share with you here. There is no way of knowing, and I don’t think there is any merit to knowing at this point. We are here now, and all of those experiences have shaped me to who I am today, writing to you from the couch in the same cabin that my grandmother passed at over 8 years ago.

Have any of you experienced this? I would love to hear your stories and experiences. I understand that a lot of what I have talked about can be a lot too. If you feel any strong emotions after reading this, I encourage you to take a break, breathe deeply, get a tea or go for a walk to re-ground yourself. It is a lot, and I can only say that I am okay, and I hope you are too.

Until next time everyone, please get some rest and remember, you are not alone in your experiences.

🍀