Siren Song

I have heard the siren song of alcohol and marijuana. Craved the quieting of my thoughts, the slowing down. Prescribed medications do help immensely, but I still understand and am wary of alcohol&#…

Source: Siren Song

Brain Dead

BrainDead

All three of us – my son, my husband and me – are sick with a virus of some sort – flu, perhaps. Exhaustion I already felt now worsened by deep fatigue achy muscles, nausea, and headache. My brain just is not working. Pulling up the wrong words. Not able to construct thoughts.

Still, took my mom to communication recovery group yesterday. Wipes me out to do so, honestly. Have to reconsider it. Another family member in the caregiver support group was familiar with resources and support groups closer to us.

I had tried calling to find out more information about that group earlier and was told that the group was not open and not communication recovery oriented. Apparently whoever I spoke to wasn’t aware of the communication recovery group in question. Difficult looking for resources and getting the door slammed in your face.

Honestly, I don’t know if I’m up to taking my mom to these groups. It helps her, but comes at a cost to me. She and my father insist on going back home, which is not an option. She wants to live with family, which would be devastating. My parents were challenging even before dementia and stroke due to alcoholism and mental illness. We love one another, but doing so can be – has been – painful.

Friday Was Tough

Note

I’ve received feedback that my delivery in this video is too clinical and offputting. Forgive me. I’m trained as a psychotherapist. No doubt I use my training and jargon not just to understand, but to defend myself, to distance myself. Plus, I just like big words.

Edited Transcript – “Ums” Removed

Yesterday was really intense. We had gotten, or I had received, a call from my parents’ memory care that my dad was… my parents were very upset because they were separating them into separate rooms.

There’s a good reason for separating them. When together they isolate and don’t let caregivers take care of them and don’t participate in activities and don’t socialize, and their health deteriorates. When they’re separated, which we’ve had them separated at different times since my mother’s had a stroke, they both participate in activities in their separate facilities. They actually do better. Both of them.

So, the idea was to have them in the same facility, but in separate rooms with same sex roommates. They can still visit each other. They can still see each other, but they have to sleep separately to try to see if we can break their co-dependent relationship. It’s a dynamic that’s not unusual. Problem is they take care of each other and don’t let other people take care of them. And, they need help. They can’t. They’re not really up for taking care of each other. They’re not up for taking care of themselves or each other.

I know that they love one another deeply, and we want to respect that. And, they still have the opportunity to have private time. That’s respected, as well. But in order for them to get the most out of the program that we’re paying for they have to participate in it. They have to let caregivers come in. They have to do things that exercise their brain, rather than deteriorate.

If we were to just let them isolate, then I would get the cheapest care possible and just… But I’ve already seen what that results in – which is unfortunately violent behavior and at times, even now, psychotic behavior – for which I’ve had to have my mom hospitalized a couple of times since her stroke.

The stroke has damaged not only just the part of her brain that handles language, but the part of her brain that handles impulse control. So any psychiatric illness that I may be heir to, and I am, is exacerbated by the brain damage.

So anyway, I just wanted to put that out there. I have writing that I’ve done, very scattered, and I want to touch on and that I haven’t really talked about, which is about… I’ll just go into it… My sister’s going to hate me for this. Which is about what it’s like growing up raised by raised in an alcoholic family. How challenging that is. What it’s like being raised by a parent who has no insight into her own illness or behavior. How it affects those who love her and who she loves.

There’s no doubt my parents loved us. Very well. Very much. But it was very hard for… I’ll speak for my own behalf.

I am thankful very much for my sister for being my reality test. When things seemed really crazy, we’d look at each other and go, this doesn’t make any sense. And, that, that’s huge. That’s huge.

But it’s a part of mental illness, not realizing that you have it. Not everybody has insight. Not everybody seeks help. Not everybody gets help. It has a devastating effect on those who love and are loved by someone with unacknowledged, undiagnosed, untreated mental illness or unacknowledged, undiagnosed, untreated alcoholism, dual diagnosis. It’s really tough.

Sometimes children raised in such an environment try desperately to please, thinking they can control behavior they can’t control. Hoping that they can earn love and avoid the emotional abuse that may come with behavior that is unpredictable, and that you can’t understand what you had done to bring it on because you hadn’t done anything to bring it on.

There you go.

I’m a Good Daughter, I Promise

Okay. I pulled into a parking lot to adjust the camera. I like driving with the windows open. So we’re going to get a lot of, we’re going to get a lot of noise. I guess I could close the windows, but I love the windows open. I close them when I’m with my son because he doesn’t like the windows open, so we have air conditioning. But, when Kitt drives [alone], we have the windows open.

Um. Driving back from visiting my parents. Totally intense. Um. My mom refused to eat their mechanically separated food, which is like an aphasia diet, not aphasia, dysphasia. Anyway, swallowing problem diet to prevent her from aspirating her food, which is swallowing her food and liquids going down not the esophagus, but the trachea and into the lungs. Not a good thing. Leads to aspiration pneumonia. Not good. So, stroke, you know, can cause dysphagia, this swallowing problem. So, she refused that and she wanted the lasagna. So after lunch, or as she was eating lunch. Well, when I was done. She started coughing up her food. So I brought her to her room. Told the nurse. So the nurse listened to her lungs. Said her lungs sounded good.

My mom continued for the next couple of hours to cough up liquid and food out of her lungs. Because [sigh], it’s so horrible. Stroke, you know, makes it so the brain isn’t telling the throat muscles what to do. This is like the non-scientific explanation of post-stroke swallowing difficulties. I think it’s dysphasia. I think that’s what it’s called. Anyway, food goes down trachea to lungs. Not where it belongs – food and liquid. Rather than esophagus to stomach. She coughed it all up, which is good.

And then she wanted to talk to me, and I thought, you know,… She also has aphasia. [Actually, I was told recently that she has apraxia. She may have both. I’m no speech and language pathologist.] She’s not able to communicate very clearly. So, um, she’s thinking, but not able to get those thoughts across because she’s not always able to write the words she means or say… She’s not always able to say… very few of the words she means.

And, my parents have been isolating in their room, and not participating in the activities that are designed for, you know, vascular dementia and other dementias at their memory care facility. Memory care is a little bit of a misnomer, because they care for all sorts of brain injuries that lead to dementia. And, dementia isn’t always memory loss. Or, maybe it is. I don’t know. I’ll have to look up that definition.

What Is Dementia?

While symptoms of dementia can vary greatly, at least two of the following core mental functions must be significantly impaired to be considered dementia: Memory; Communication and language; Ability to focus and pay attention; Reasoning and judgment; Visual perception]

But, anyway, brain, you know, they have people with temporal lobal [Frontotemporal Dementia (FTD)], you know, anyway, brain injuries [Traumatic Brain Injury] from being football players, brain injuries from surgery, Alzheimer’s, alcohol-related dementia, which my dad has. I’m an heir to alcoholism. I can feel it in me. And, I have to be very careful not to drink regularly.

Um. And, my mom had the stroke. My mom had been the caregiver of my dad. And, she had a problem with blood pressure, a-fib, and, um, well, needing blood thinners. Now, she’s on a variety of medications to prevent another stroke. Her stroke was pretty severe, and she now has what’s called global aphasia.

So, OK, so we met with the social worker. She has a background [MA] in psychology, but she’s getting her MSW. Anyway, met to go over, um, to communicate with the three of us. My dad’s like Dory. He remembers for like a few minutes and then forgets, so he’s always having to be reminded. You can’t blame him. You know, you can’ t control it. He’s like Dory.

So, my mom got out the word “family” in terms of where she wanted to be. And we had to explain to her that I couldn’t take care of her because of my bipolar disorder, I would end up hospitalized. I hardly have my life together, as it is taking care of…this might be a bit too much wind. I can hardly take care of myself, my kid, and my husband, and my house. I mean, it’s a mess. Um, and my mom’s, she can be challenging. In fact, she’s challenged several different places. A lot of places have had trouble with my mom because she’s a pretty strong willed woman. Um, should have been a CEO or something. Anyway, she was the CEO of our lives. She was a mom.

Anyway…  [sigh] I’m… I’m spent. She wanted to continue to talk to me after we had met with Sheila, the liaison, social worker, but, um, I just said I had to go. That it had been, that we had done a lot, and that that was, that was enough. That was enough. I kissed her. When she said.. Oh, she said the word “family.” Did I say that already? She said the word “family.” Clearly, and I hugged her and kissed her for saying the word, and said, “I can’t.”

I know she wants to live with family. Yeah, I know. Wouldn’t be good for her. Wouldn’t be good for us. It’s hard making these decisions. I feel so… I don’t know. I’m not even going to say. Say, like, I feel like I’m betraying my mom. I feel callous. I feel selfish. I’m working so hard as is. I mean, really. Even with all of these professional resources at my behest. Using my parents’ savings, selling their house which I know they don’t want us to do, but we’re doing in order to care for them. I know it’s breaking their hearts, but it’s what’s best for us all. I visit them regularly. I’m a good girl. I’m a good daughter, I promise. See, that’s like my thing. Being a good girl.

[Sigh] Oh, God. This is so hard.