Reunited and Learning ASL

My mother has moved back in with my father, back into the same Silverado memory care community (which is lovely), again sharing a room. I hope and pray it goes better this time round than last when they isolated and refused medication and care. They love one another very much, so it is wonderful to see them together.

Missing his old home, my father asked about his old beach house which we sold last year to pay for their care. The staff has told my dad “therapeutic white lies” about the house, such as saying that the plumbing is being repaired.

Instead of using a “therapeutic white lie,” I skirted the issue, telling my dad that since my mom had her stroke, she needs care and that the house was too much work. He asked her if she wanted to live in the memory care community, she nodded her head yes (since the stroke, she hasn’t been able to speak).

I told him that it was no longer her job to cook, clean, or take care of him. Up until the stroke, she was his caregiver, as he’s had progressive memory loss for years. I told them that their individual needs differ now. Mom cannot use language, but dad can and should take part in community activities designed to exercise the brain and fight memory loss.

The community’s social worker has started working with my mom to help her communicate her feelings. My mom didn’t like using communication boards. I knew from previous attempts at using them that my mom doesn’t seem to understand what the drawings on the boards represent. She didn’t want to try writing either, as she knows that she simply cannot.

BUT… the social worker discovered that my mom responds to ASL (American Sign Language). So now my mom, dad, and I are using simple ASL signs to communicate. Not sure how much my father will remember due to his dementia, nor how much my mother really understands due to her stroke and vascular dementia. At least, my parents seem to enjoy learning it.

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.

Catharsis

Ok, so, um, I’ve always sort of put myself out there. Way before I ever had therapy or was interested in psychology. It just is my temperament. And, not only is it my temperament, but it’s been something of a defense mechanism. If I put myself out there, then people can’t hurt me with any secrets because I have no secrets. I’m like, “Yeah, so what of it.” I’ve always been that way, since I was a little child. Always been WAY open.

My name is Kitt Kathleen. Kitt is my full first name. Kathleen is my middle name. Redundant name. I love it. My Aunt Kathy. My Aunt Kathleen, I’m named after. She’s my godmother, also. I got a bonus godmother in that my mother’s friend, Annette, best friend, Annette, stood in for my Aunt Kathy during the ceremony, during my baptism. So, I have two godmothers. My sponsor, my aunt, and then my stand-in, Annette. So I’m doubly blessed.

But, anyway, back to my name. Kitt Kathleen. Both names are derived from Katherine, which comes from… Sorry for the background noise. I’m driving with the windows open in order to dry my hair. Anyway, Katherine… Catherine derives from catharsis, which is, you know, change through emotional, well, okay, I don’t have the definition in front of me right now, and I’m a little scattered, but think catharsis, think Kitt, you got it. You know, change through an emotional outpouring, through cathartic, through catharsis. So, Kitt is cathartic.

So, here I am. I’m driving to have lunch with my parents. I’m apprehensive. It’s challenging seeing my parents. They’re not happy with the decisions I’ve [we’ve] made for them. They want to be back in their home, which is in escrow [has since fallen out of escrow]. But, they’re not able to take care of themselves. And, I’m not able to take care of them either.

I know they had wanted us to stay in their house, to have us take care of them. But, I have bipolar disorder. My son gets migraines and has social anxiety and depression. My husband would do anything, is willing to do anything. But, I don’t think it’s good for him either to be put in the position of taking care of everybody. He’s got some anxiety himself – claustrophobic, and he’s an engineer, so he’s a little tightly wound.

None of us is kind of chill. Let’s just put it that way. None of us is chill. We’re thoroughbreds. We’re tightly wound. We’re a little over-bred for intelligence. You know, sort of the Jack Russell terriers of the world. Anyway, I guess that’s it for now. A little cathartic sharing.

I’ve Been Really Busy

Walk on the beach

I haven’t been blogging as much recently because I’ve simply been too busy to do so. Moved my parents into Silverado Memory Care Community in San Juan Capistrano Wednesday. My parents are getting excellent care at Silverado. Already they have participated in the social hour and taken a Zumba exercise class. The caregivers are attentive. They have 24-hour nursing staff, and a medical director. Their specialty is working with people with dementia, especially those kicked out of other facilities. They know how to engage their clients positively. They have dogs, cats, birds, and guinea pigs. Two golden retrievers met my parents when we first went in the door. Perfect. My mom sat and pet the guinea pigs, which is very helpful for calming anxiety. I’m hopeful.

Right now I’m in their house in Hermosa Beach taking care of business. Many decisions. Much work. Very busy. Working with my sister to make decisions about their home and their belongings with love and discernment. Paying their bills. Doing their income taxes. Managing their finances. I’ve interviewed real estate agents and brokers, am getting construction bids on deferred maintenance, and finding out what it will take to get the house ready to rent. Yes, I’m super busy. I’ve earned myself a drink (maybe a beer or hard cider) and a luscious dessert.

Together Again

Mom and Dad Together AgainFinally, my parents are back together again since my mother had an acute front left lobe stroke in mid-November. We’ve taken my father to visit my mother in stroke rehab, but tonight they sleep together.  No longer is my father in memory care in one facility and my mother in stroke rehab in another.