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.
When my son was a preschooler in daycare
His class had a field trip to the local In ‘N Out
As we walked back to the daycare center
My son held my hand
We walked in pairs down the sidewalk
His daycare teacher said
Everyone stay on sidewalk
Do not step into the driveway or the road
My three-year old son touched his foot in the gutter
Just his tippy toe
His teacher swiftly grabbed him from my hands
Took him with her to the front of the line
She gave me another child to walk
A more compliant, less rebellious child
My son, he was rewarded
He got to walk at the front of the line
Beside his favorite teacher
I was punished
Cannot control her child
Later that day when I returned to work
I told this story
One of my bosses smiled
Kitt, you love that in your boy
That your boy rebels against the rules
Just like the Berkeley rabble-rouser you once were
Pushing the limits
Yes, it still brings a smile to my face
That I have a son who dared touch his toe to the gutter
He understood the importance of staying with the group
He understood the spirit of the law
He did not run out into the road
Yet he questioned, dared to test, the letter of the law
What happens, he wondered, if I break this rule just a little bit
The memory also hurts
How dare that teacher rip my son from my hand
How dare she judge me and my child
Deem me unfit to walk my son back to daycare
Before I had to return to work
Return to work judged an ineffective mother
Return to work rather than stay with my son
Now that I think about it
He punished me
How dare I go back to work
How dare I not stay home with him
Upon reading Try Harder with Your Mental Illness by Henrietta M Ross of The Triumphant Weed, I remembered a topic that has been on my mind lately—whether we have the right to die.
Though I preach hope and advocate that people try treatment instead of taking their lives, I wonder whether it is reasonable to decide to die when the pain is too great to bear and does not respond to any treatment.
I often feel disingenuous telling people that there is hope, for that is not always true. Some of us living with mental illness respond more effectively to medication, psychotherapy, support, exercise, good nutrition, meditation and so on. Some do not.
No one chooses to have “treatment resistant” mental illness. We cannot will mental illness away. Treatment does not always work. Still, sometimes there are options we have not considered, options supported by science, that just may work.
My friend Dyane Harwood chose ECT when medication failed her. ECT saved her life when she suffered deep bipolar depression. With the help of an astute psychiatrist, she eventually found that adding an “old school” MAOI to her medication mix helped.
I assume I will get some fire, and perhaps some concern, for this post.
Further Thoughts on the Issue…
People With Mental Illness Deserve To Die With Dignity Too, Arthur Gallant, Mental-health advocate
Assisted Suicide for Mental Illness Gaining Ground, Nancy A. Melville
“A first-of-its-kind report offers insights into the characteristics and outcomes of requests for euthanasia on the grounds of suffering related to psychiatric illness in Belgium, where it is legal in that country.”
“We found that when considering patients’ demands seriously, most do find a way to continue with their life,” Dr Thienpont said.
Euthanasia requests, procedures and outcomes for 100 Belgian patients suffering from psychiatric disorders: a retrospective, descriptive study (Thienpont, 2015, BMJ Open 2015;5:e007454 doi:10.1136/bmjopen-2014-007454)
“In Europe, psychological suffering stemming from either a somatic or mental disorder is acknowledged as a valid legal basis for euthanasia only in Belgium, the Netherlands and Luxembourg.”
Now that I’m one of WEGO Health’s 7 Bipolar Depression Patient Leaders You Need to Know, I decided that I would update my Resources page. Actually, the two have nothing to do with each other. Just promoting myself, thanking WEGO Health, and passing on the resources…