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.

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!

Caregiving Can Wear You Down #RealTalkAboutCare

My mother, father, & I in watercolor filter

Since Thanksgiving weekend, I’ve been sick with an upper respiratory infection (URI). As an asthmatic, URI’s tend to go to my lungs. My son, too, is sick and in bed (no way for a teenager to spend the weekend). URI’s are highly contagious. We tend to share far too many illnesses in my family. Even our labradoodle Thumper is taking antibiotics for a cough.

Until my mother had a stroke November 2015, she was my father’s caregiver. Since then, caregiving has become my responsibility, as now both my parents have dementia. My father has alcohol-related dementia (alcohol is a neurotoxin). My mother now has vascular dementia with behaviorial complications (brain damage can do that) and she cannot speak.

As I live with bipolar disorder while parenting an adolescent migraineur, I couldn’t care for two aging parents with dementia without help, for doing so would likely put me in a psychiatric hospital. Finding long-term care that could address their needs proved challenging. For now, we’ve had to separate them – heartbreaking, but necessary for their health. To pay for their care, we had to sell their beloved beach house, for memory care is extremely expensive.

If my mother had more caregiving support before her stroke, perhaps she may not have had a stroke, perhaps she would have received more timely medical care. My mother was exhausted, stressed, and taking antidepressants (caregivers are at risk of depression). My father just thought that my mother was napping. His dementia interfered with his ability to respond to her stroke appropriately.

My mother, a caregiver, needed help, needed respite, needed care herself. My sister and I had been talking to our mother about downsizing and moving closer to my sister. But, my father fought the idea of moving out of their beach house, leaving our mother essentially trapped.

Thankfully they are doing well now, given their current life circumstances. Take care of yourself. Take care of your brain. Take care of your heart. Good health is a blessing.

Caregiving Resources: AARP Caregiver Resource Center

Mini Thanksgivings

of-course-they-miss-this-view

This weekend my sister visited and we celebrated Thanksgiving twice with our parents. Friday we joined our mother at her memory care community and joined their festivities. That afternoon and early dinner went very well. We had fun decorating her room and organizing photos.

Saturday we brought our father to visit our mother for lunch. The visit went well until we left them alone for a few minutes while we got coffee in the lobby. By the time I returned to our mother’s room, they were planning their escape back to their old beach house (which they no longer own – we had to sell it to pay for their care).

Big sigh. Clearly they wish their lives were as they were before dementia, before stroke. We all do.

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