Who Do I Care For, Really?

Definition of caregiver: a person who provides direct care (as for children, elderly people, or the chronically ill) https://www.merriam-webster.com/dictionary/caregiver

I spend way too much emotional and physical energy toward the care of others, aside from myself. Why do I care so much, too much? No doubt due to my upbringing, to my relationship to my parents – trying to please, to earn their love and approval. Why, after decades of therapy, do I still feel and act as an enmeshed parentified daughter? I’ll just leave that question hanging there for now. Not up for explaining alcoholic family dynamics. Too tired. Adult Children of Alcoholics has a good concise description.

Who do I really care for? Good question. My husband and my son are the most important people in my life. I have devoted a great deal of time and energy trying to help my son. Too much, perhaps. No, not perhaps, without doubt. Now, I need to step back, to neglect a bit, to allow for more independence. Time to do just enough. To be just good enough. Just enough. Enough.

My sister, trying to help me set boundaries and stop taking on too much emotional responsibility, reminded me that I am not our parents’ caregiver. They are in memory care. The memory care facility provides their daily care. That’s what we pay them for.

I am not my parents’ caregiver. I am my son’s caregiver, and even he could use less of my care.

Now that my parents both have dementia and live in a memory care community, aside from being their daughter, my role is to be their power of attorney. With my sister, I make decisions on their behalf. I pay their bills. I coordinate their care, which is not the same as giving them direct care.

Before my mother’s stroke, I did not visit my parents regularly. I did, though, talk and play Words with Friends with my mom daily. I miss communicating with her. I miss my parents as they were before dementia. I’m grieving.

Living with bipolar disorder, I must take care of myself. This season, springtime, is a time when I often start mood cycling. I’ve feel particularly vulnerable and fatigued. The longer sunny days trigger hypomania and irritability.

On a more positive note, in January and February and again next week, I’ve been a NAMI Provider Educator for the staff at the hospital where I received both inpatient and partial day treatment twelve years ago. I enjoy educating their staff on what it is like to live with mental illness and to be in mental health recovery. Wish me well next week. We’re increasing the time that we devote to our personal trauma stories, so I must rewrite mine. I may edit my In Our Own Voice presentation for content, or I could take a look at what I have shared here.

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.

Verbal Non-Verbal

verbal

Sometimes, I’m verbal
The words rush
They press
They insist on getting out of my head
They keep me awake at night
Unless I shut them up
Turn them off with meds

Sometimes, though,
I’m simply not
Sometimes, I’m non-verbal
The words are not there
I do jigsaw puzzles
Watch TV
Play with numbers
Rather than words

When the words fly
They are raucous
Noisily filling my mind
Needing to get out
I need relief
So, I write

Then, I must get
The racing commentary
Out of my mind
Onto the screen or paper
In black and white
Where later I reshape them
Edit them into something coherent

Perhaps
Or, perhaps,
Sometimes, I leave them
In a jumbled mess
All over the page

Am I Still a Mental Health Blogger?

Self, Wife, Mother, Caregiver, Writer, Blogger, Mental Health Advocate

What defines being a blogger, specifically a mental health blogger? Must I write regularly or frequently? Must I always write about mental health? What if that is not my focus ALL the time? What if I’m so busy that living with bipolar disorder is not in the forefront of my mind? What if I’m overwhelmed by my life circumstances? What if I’m simply taking a break?

I’m not the most disciplined writer. Never been one for discipline; though, I do brush and floss my teeth every night. My house is a mess – dusty and cluttered. I bathe or shower (I prefer to bathe) at least once a week. (You are probably disgusted by this admission. I try not to move too much, so I don’t sweat and get stinky. Yes, I know I should exercise daily. And, eat better. Just because I know better, doesn’t mean I do better.)

Followers of my blog say they miss me when I write once a month, and not more often. Not sure if it’s nice to be missed, or if it’s stressful, if I have an obligation to write.

No, I have no obligation to write.

That’s why I blog.

It’s mine. All mine.

Yes, I interact with others here and enjoy doing so. I respond to those who comment.
Recently, though, I’ve been busy with life. My illness, bipolar disorder, hasn’t been the focus of my blog. I’m fairly stable. My symptoms are more or less in remission. But, the concepts of remission and recovery can mislead. Serious mental illnesses, like bipolar disorder and schizophrenia, are chronic, lifelong brain disorders. You can live with them. Medications can help you treat the symptoms. But, the brain disorder remains.

To stay stable, I must be careful. I must plan for how certain circumstances affect me.

Last month I presented and next week I again will present as an individual living with mental illness for NAMI Provider Education at the hospital where over a decade ago (12 years now) I was treated two weeks inpatient and for a few months in their partial hospitalization program until I got bored.f

I get overstimulated in social situations and must recover. I cannot sustain that level of social functioning without paying a high price – psychiatric instability, hypomania and subsequent depression, mood cycling. So, I must keep in mind that I will need downtime afterwards – time to recover.

So… I started writing this piece wondering about the effects of my recent lack of “mental health” blog posts. I’ve also slacked off reading and commenting on others’ blogs. Sorry, folks.

I’ve been too busy doing taxes (scanning tons of receipts), driving my son to and from school and numerous doctors’ appointments (unfortunately, he isn’t motivated to get his driver’s license anytime soon & knows we didn’t get ours until we were 18 & 19), and making sure my parents are happy.

When I haven’t been busy, I’ve been exhausted – too exhausted to write, to read, to do anything verbal. Instead, I took up doing jigsaw puzzles on my iPad – enjoy that they are visual, non-verbal, and engage my mind.

Yes, I’m a Math Geek

yes-its-that-time-of-year

By January 22nd I had scanned almost every home improvement receipt my parents kept since 1978 to help the CPA, my old boss, adjust the basis of their house to calculate capital gains. I scanned over 625 receipts!

There is more work to be done, more information to be gathered, for my parents’ income taxes. I’ve also started the easier tasks for our own income taxes.

I enjoy managing money, working with numbers and spreadsheets. Always been a math geek. Enjoy the patterns, the stories, that the numbers tell.

Warning: Here, I Boast

In my youth, I was more a lover of math concepts than numbers. No longer do I get to use my beloved unit circle or calculus. My one regret is not continuing math past honors calculus – a class I loved. I love to boast (yes, I’m still proud of this achievement) that I, at 18, got 100% on the math placement exam at UCLA.

Today, at 53, I’m far from that sharp as a tack, hypomanic young woman. Wiser, perhaps, but time (and neglect) has taken a toll on my mind and my body.

Time to Care for Myself

Yesterday I saw my internist. In the last year and a half, I’ve gained twenty pounds and my triglycerides are high. Haven’t been eating well, especially for my needs, as I have SIBO – small intestinal bacterial overgrowth. Trust me, you don’t want the details. Many people with IBS (irritable bowel syndrome) have SIBO. To control my symptoms, I must keep to a restrictive low FODMAP diet (fermentable oligosaccharides, disaccharides, monosaccharides and polyols), which involves not eating many healthy foods, like onions, garlic, pit fruit (who doesn’t love peaches?).

Time to get moving, too, for I haven’t been exercising. Both exercise and diet are important for mental and physical health. My mother and my maternal grandmother both had strokes, which puts me at risk. Exhaustion keeps me from exercising, which reinforces the feeling of exhaustion.

My focus has been on caring for others – my parents and my son.

Time to care for myself.

Good News – NAMI Provider Education

Last month I enjoyed teaching NAMI’s Provider Education course along with four other great panelists. This time I presented as an individual with mental illness. Last year I presented as a licensed mental health professional (no longer in practice) with lived experience of mental illness. Scheduled to do so again in mid-February.

Yay!