Happy Holidays!

Peace & Love KittOMalley.com

I have not been up to writing recently. Just been binge watching TV and doing jigsaw puzzles on my iPad. This season is emotionally fraught for me, starting with my mother’s birthday in October, Thanksgiving, my father’s birthday in December, then my husband’s birthday, then Christmas, finally New Year’s (which we sleep through).

Never much liked the holidays, for they usually involved my parents getting drunk. Arguments often ensued. But they were better behaved at our homes, as we created new rituals with our own families. My parents didn’t want to risk not seeing their grandchildren. Thanks to my sister for putting her foot down and clearly defining that boundary.

Years ago, I would host Thanksgiving. Believe I quit about the time I was hospitalized for bipolar disorder. My sister has taken on the role of hostess, which I appreciate. Her sons are the closest thing my son has to siblings.

Now that my parents are both in memory care and not able to join us, I miss them. Sounds odd, but even alcoholic families can be loving. Our illnesses do not define us. I miss communicating with my mother who since her stroke has severe aphasia. She doesn’t understand language, cannot speak, read, or write. Carrying on a conversation with my father, who cannot remember what was said two minutes ago, takes patience. My parents live in a lovely community. They seem happy together. But I miss them both. They are simply not the same. Dementia, both alcohol-related and vascular, and aphasia have taken so much of them away.

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.

Caregiver’s Bill of Rights

National Aphasia Association logo

National Aphasia Association Caregiver’s Bill of Rights

I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.

I have the right to seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.

I have the right to maintain facets of my own life that do not include the person I care for just as I would if he or she were healthy. I know that I do everything that I reasonably can do for this person and I have the right to do some things just for myself.

I have the right to get angry, be depressed, and express difficult feelings occasionally.

I have the right to reject any attempt by my loved one (either conscious or unconscious) to manipulate me through guilt or anger.

I have the right to receive consideration, affection, forgiveness, and acceptance for what I do for my loved one as I offer these attributes in return.

I have the right to take pride in what I am accomplishing and to applaud the courage it has taken to meet the needs of my loved one.

I have the right to protect my individuality and my right to make a life for myself that will sustain me in times when my loved one no longer needs my full-time help.

I have the right to expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made toward aiding and supporting caregivers.

Quoted from http://www.aphasia.org/aphasia-resources/caregivers-bill-of-rights/

Freaking Out

Once again I accidentally skipped a medication dose. Thursday evening I forgot to take my divalproex (used to treat seizures, migraines and bipolar disorder), making me less stable, more irritable, short-tempered with my husband, overwhelmed, emotionally fragile, raw and vulnerable. F*ck. So that’s a bit of background for how I felt Friday and Saturday.

Am I doing right by my parents? Am I failing myself and my son?

Friday Texts to Owner of Board and Care

Kitt: My mother’s speech therapist told me to work with my mom daily. I’m not up to that b/c I have bipolar disorder and my son gets sick, migraines, depression & anxiety. I must protect myself and my family’s well-being. I do not think that the caregivers are up to speech therapy exercises. Maybe I underestimate them.

Owner: Hi, Kitt, I completely understand your concerns & your concerns for your family. I agree with your assessment that caregivers are not really well qualified to do that, but they can try doing it, & we will see how it goes. It will get better.

Friday Texts with My Sister

Kitt: FYI, the speech therapist today said I should work with mom every day on speech therapy exercises. Staff at board and care are just “caregivers.” They cook, clean, help with bathing. I talked dad into showering today with mom’s help. Mom refused to shower.

Sister: I wonder why mom won’t take a shower? You do not need to follow the demands of a speech therapist. You can do the speech therapy exercises when you are available. They will not control your life. You will control your life and time.

Kitt: This is what she wrote. Do not know what she meant.


She is having trouble with receptive speech, with understanding what is said to her or asked of her. But she knew we wanted her to shower b/c she gets gestures and if restate putting in context.

Sister: Do you think she needs a chair in the shower?

Kitt: I bought one. It’s in their shower.

Sister: Maybe she wants it out then? Or she’s worried dad is going to jump her? 😳 love in the shower?

Kitt: If she wanted it out, she could take it out.

Sister: Yeah. Probably more the second idea?

Kitt: Thanks for the smile. I’m pretty stressed. I know you are, too. On the positive side, she made huge strides after one session with this guy.

Sister: Good!

Hope that Speech Therapy Books Will Help


Purchased these books online. Hope that I can delegate exercises for my dad to do with my mom. He has moderate stage dementia, so not sure how it will go. I know he wants to help, though. It will give them something to do together that will benefit them both cognitively. Obviously, I’ll have to break it down simply. Will get them a calendar with instructions (page x in book y),  shower schedule, and physical therapy and speech therapy schedules.