Shedding a Few Tears

tears-on-plant

It’s been a year. It’s been a year since I noticed that my mother hadn’t taken her turn in Words with Friends. It’s been a year since my mother was verbal. It’s been a year since she could use language.

Her passion was words. She spent her days playing word games. She was proud that she had been debate team captain in college. She could and would and did slay with words.

Last year she had a stroke. Life hasn’t been the same since – not for her, not for my father, not for my sister, not for me, not for my son, not for my husband.

Finally, I allow myself to gently shed a few tears, a few soft tears. Finally, I allow myself much needed mourning the loss of my verbal mother. She is still with us, but she is different. Her brain permanently changed, permanently damaged.

I can no longer talk on the phone with her. I can no longer play word games with her. And, so, I’m sad. I miss the old her. Even if she did slay with words.

Flight Back Home

Friday, July 15th

Last Saturday, the day after we returned from Oregon, my mother was psychiatrically hospitalized for the third time since her stroke last November. Yesterday morning, I met with the treatment team at her psychiatric hospital. They do not think she needs long-term psychiatric placement. They believe her memory care community is the best placement for her and that she’ll just likely need regular “tune-ups,” returning to the psychiatric hospital when she refuses to take medication and her mental health deteriorates.

Luckily my parents’ house sold, with escrow closing yesterday. This morning I met with a financial planner to invest the proceeds from the sale on behalf of my parents and schedule regular withdrawals to pay for their care. Long-term memory memory care is expensive.

OR Trip
Oregon was beautiful and offered a relaxing break.

Flight Back from PDX to SNA – July 8, 2016

Before returning our rental car at PDX, we stopped for gas. While making a pit-stop, I received a call from my mother’s memory care community which I let go to voicemail. Inopportune time to take the call, as my purse hung on the restroom door handle out of my reach, and I didn’t want to dribble, squat and waddle over to answer my phone. Instead, I’m sharing the impolite (and perhaps amusing) imagery that came to my mind as the phone rang (to temper the vulgarity of the scene, my ring tone is Take Five by Dave Brubeck – yes, I love jazz).

The voicemail confirmed that once again my mother refused to take her medication and threatened violence against the nursing staff at her memory care facility. Once again, time for psychiatric hospitalization. This is getting old. Really old.

I fear my mom may need long-term psychiatric placement. Locked psychiatric care 24/7. Do not know what is available. Time to reach out for help. Time to research geriatric psychiatric residential placement for mom. Fuck.

That’s all I have to say on the matter. I do feel myself coming to tears. I fear, too, ending up like mom. Crap.

Shit.


Now I’m just spent. I did have a good time this week in Oregon. It was a nice break from my life, from my responsibilities, from the mess and clutter that is our house, from the mess and clutter that is my life.

We went to the wedding of one of our many nieces last night. They wed under Cathedral Bridge (St. John’s Bridge). The bridge is built with stunning Gothic arches and a backdrop of trees along the river. Then we had an incredible dinner at Plaza Del Toro. Very upscale and gourmet. So delicious. Loved it. Wish we had that kind of food in our neighborhood.

I look forward to getting away again and again and again. I need these breaks, these respites.

 

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.

Anxious about Dementia

So here I am, in my car, which is pretty hot. Probably have to open the windows to let in some air. Just going to make it hard for anything to be heard. Oh, oh, that feels good.

Okay. I’m on my way to the Alzheimer’s Association of Orange County, or whatever it’s called, Alzheimer’s dot org of Orange County. ALZ.org for those who want to check out the national Alzheimer’s US group. But I’m going to the local OC chapter’s educational series. The first one is Basics – Dementia Basics. I’m driving, so I’m not necessarily getting the title totally correct.

I’m actually pretty anxious going to it. Anxious because, well, this is pretty emotionally trying for me having both my parents with dementia right now. My mom’s struggling with what’s called vascular dementia, which is secondary to her stroke, and can be caused by heart problems, blood pressure, high blood pressure. All those things can damage the brain. Right? High blood pressure goes up, damage to the brain. So, and her stroke was the most damaging to the brain. Just horrible.

And, my dad has been struggling with memory loss for many, many years. This last year it’s just taken a real dive. He still has his social skills, but his memory is pretty fried, especially his short term memory. But he’s able to reason. His intelligence is there. It’s alcohol-related dementia. Some people are more susceptible than others. Have people drinking the same amount of alcohol. One gets cirrhosis. The other gets alcohol-related dementia. The other gets nothing. So, you never know what you’re playing with in terms of your deck, and you better take pretty good care of it.

I try to do my best. Well, I don’t do my best. I try to do my better. (Laugh) I don’t exercise enough. I know that. I’m taking cholesterol meds rather than strictly adhere to a low fat diet. I try, I look at the fat content in everything, but I just have my weaknesses, especially since my mom had her stroke. I’ve put on at least ten pounds, maybe fifteen. I think it’s about ten pounds according to my physician since her stroke, and it’s pounds where you don’t want to have it, on your stomach. That’s the area that’s not good for your heart.

Heart health is what I really have to take a look at now as somebody who is susceptible to stroke. My grandmother died, my maternal grandmother, my mother’s mother, died of stroke, and she’d had several TIA’s, which are like mini-strokes, before that. So, anyway, just checking in.