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.
You are lucky to have each other. You are a good daughter.
I missed these videos somehow, Kitt. I can feel your pain, especially as you challenge your difficult decisions. Never doubt that you are a good daughter. ❤️
Sorry that you and your husband had to go through this experience. It is tragic and painful.
I don’t think either my mother or father could ever see themselves as a burden. They lack insight about their own behavior and how it may affect others.
Kitt, you are a great daughter, dealing with an impossible situation. Watching your video brings me back to the conversations I had with my husband, an only child devoted to his mother, about the reality that continuing to care for her in our home was killing us all. Her dementia had progressed to the point where we couldn’t leave her alone for meals, and she barely left the house. We were sacrificing ourselves beyond what was reasonable, and she was miserable because she was aware enough to feel like a complete burden. Moving her to a facility was one of the hardest things I’ve ever done, and was certainly not her choice. But it was a necessary stage in the very painful process of caring for her as her mind deteriorated and, once she settled in there she was actually much happier. You are doing the right thing for yourself and all the people you love. I’m so sorry your mom can’t appreciate that…it’s heartbreaking!
Thank you, Ellen. I do wonder if this is the best way to end one’s life.
Despite your hellish situation, loved riding with you. Very effective use of video. I am SO SORRY you have to go through all this! Been there, except my parents had cancer. Why must the end be so hard? I am a firm believer in how the end is handled for our domestic animal friends. Certainly would opt for that for myself. Praying for you and you ARE a good girl!
That’s what they don’t understand. My limits, and just how demanding caring for them is.
Hi Kitt, my heart goes out to you and both your parents. I know you are a good daughter and a really good person. Don’t ever forget that. I know the guilt when they don’t want you to leave but you can’t be there 24/7. You are so strong to be doing what you are doing. Just be good to yourself and take care of you. Don’t forget to be mindful of your limits. hugs ~Mindy
Need to say “um” less often, though.
Thank you! God bless.
You really know how to use video to blog your story…It’s a skill that I admire.
Thank you, Robert. I’ve always been a drama geek. Love being on stage. Just little opportunity so far (since high school, that is – I had opportunity when I was in seminary, but quit twice).
Yes, you are a good daughter. It is hard – where do patient rights and quality of life begin and end? If you deprive me of my lasagna I am going to remind you who’s the mother lol… If I remember. Anyway you do the best you can, one day at a time.
You’re right that dementia is not always memory loss, it is a multitude of symptoms.
I am sorry you are going through this with them 🙁
It does help to have insight. I also do my best to protect my partner from my DID. It’s very difficult to manage an illness that affects one’s sense of self — but we must try.
I find your ease in front of the camera interesting. I’m only at ease on the other side of it.
It’s hard not to get drawn in as you speak.
It is hellish. In many ways, actually, my relationship with my mom has been hellish throughout my life. Still love her, though. More compassionate as I’ve learned more about mental illness and family dynamics. She’s always been sick, but never had any insight into how her behavior negatively affected those around her. I’ve tried to own my behavior, and be proactive in caring for my own mental health. I’ve apologized to my husband and to my son when I’ve hurt them.
This sounds like a hellish situation for you and your mom. I felt as if I was riding with you.