I am feeling like an elderly caregiver who listened to a hypomanic daughter on the phone for two hours, delivered takeout food to her, then walked the family dog and did yard work (i.e., mowing, edging, sweeping) totaling six miles. This is not the lifestyle of retirees who take ocean cruises and flights to Europe. Now it’s time to do nothing for the remainder of the day. 
#Caregiving
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#caregiving
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If you will be in the Redwood City, California area on July 23rd and want to come to an in-person discussion of #caregiving, #grief, and #dementia, I will be leading a conversation about these matters at the Kensington Redwood City. Here is the announcement with a link to the RSVP.
It is easy to become consumed by #stress and hard to find time for #selfcare. But preventing burnout is essential to sustaining and potentially improving our #caregiving for loved ones with #dementia.
My smurfing smurf of the Dutch welfare smurf:
- Many people at home and abroad believe that we in the Netherlands have built a wonderful welfare state.
- This was indeed the case once it was built, but unfortunately subsequent generations failed to carry out the necessary maintenance.
- Proper safety nets are no longer available in the Netherlands.
- They're really more like trampolines nowadays.
This is my short, personal logbook about bureaucracy… 
1/3
We are not powerless against #dementia. Until we can prevent or cure diseases like #Alzheimers, we can give support, understanding, love and as many moments of #happiness as possible.
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Update: The incompetent temporary manager is leaving on the 22nd. She’s put up a poster in the home, for a party she’s having to see her off.
I bet we are paying for it.
Might turn up and get my money’s worth.
Doubtless she’ll fail upwards, and be running a home elsewhere.
God help them. Zero people skills.
Mom is heading to the hospital in an ambulance. Seems to be having some sort of seizures of the "absent" variety, per the paramedics. Freaky. At least I managed to not let her fall to the ground. For what little that seems to be worth it. I think maybe I'm not good at #caregiving
This is what I spent the time between J's thyroid pill* and breakfast this morning doing: making tiny pills into bigger capsules.
Why do they make pills so small, anyway?**
#accessibility
#caregiving
#parkinsons
* You have to wait 30-45 minutes to eat after taking it
** Rhetorical question
Replied in thread
On July 23 from 5:00 to 6:30, I will be at the Kensington Place in Redwood City talking about #caregiving, #grief, and #dementia. All are welcome. You just need to RSVP at KensingtonPlaceRedwoodCity.com/events
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So get this: Then senior nurse who gave the temp my number to call just phoned.
“I’m sorry. The system wasn’t working, so I wrote down the wrong number and passed it on. “
So, despite me seeing this Nurse pretty much every day for a year, and her being the senior nurse on mums ward, she writes down my name and number (wrong) and passes it on.
Great system. Terrible non-excuse.
I’d have taken ‘it was an awful mistake”
Am I being snowflake about this?
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I had to explain to her how upsetting it was to get a call like this. She as all: ‘oops, my bad’
The home pretty much only call when she’s fallen, or had a medical emergency, so imagine what my brain was doing when she phoned.
Even then, no apology was forthcoming; she just blamed the Nurse. Even though the dead patient’s name and mine didn’t match her records.
Absolute incompetence : Make sure you know who you are calling.
So angry.
#caregiving
I just got a call from Mum’s care home to say she’s being ‘collected’.
Me: ‘What do you mean? She doesn’t have an appointment. It’s 7.30 am on Sunday. Who is collecting her?”
Home: Gillman’s Funeral Directors. Are you Steven?
After getting over the shock, she told me she was agency staff, and had been handed a note to call me from a nurse, whose name she couldn’t remember.
Un-fecking-believable.
She’s very much not dead.
But my faith in this shitty home is.
Self Care: Hardly cook for myself any more. Trapped in the Meal Deal cycle, after Lunchtime Care home visits.
Today, I said fuck it, and cycled to Wing Yip to stock up on my Asian Larder. Found some lovely teeny tiny frozen shrimp, proper tamarind and palm sugar.
Realised that the murky jar of home made Kimchi lurking in my fridge was actually very serviceable.
So:
Made a huge batch of Pad Thai sauce, and knocked out a well balanced bowl of happiness.
"The Medicaid program that pays for in-home care for Daniel and 8,000 other Missourians with disabilities allows family members to be compensated for caregiving, but only if they’re not the legal guardian of the person they care for. So, Gallagher went to court to give up her rights to make decisions for her son and transfer authority to her parents."
KFF Health NewsTo Keep Medicaid, Mom Caring for Disabled Adult Son Faces Prospect of Proving She Works - KFF Health NewsA proposed work requirement would make Medicaid expansion enrollees prove they’re working or meet other criteria. Most already work, but millions are expected to lose coverage if the provision passes, many from red tape. A Missouri mother who cares for her disabled son would probably be subject to the rule.
Really looking forward to his Stella St. Al Pacino. That should gee up the ladies no end. 
Chatting with a lovely lady who walked back into the home with her carer after a visit to the shops.
We had a lively chat, and she said:
“I dont know where I’ve been, I’m a bit demented”
“Aren’t we all” I said
“You’re just better at it than we are”.
She loved that.
gentle reminder that being patient with ourselves helps us gradually overcome the fear of #caregiving.
(image: @LEAD_Coalition) #Alzheimers #dementia #quote
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As I was leaving the home, I got press ganged into an office by a ward nurse, who, unannounced, wanted me to fill out a shitty PDF with Mum’s end of life ‘requirements’.
I wanted to say “one last argument please”.
My mum was a psychoanalyst. She loved to talk about anything, at extraordinary length.
I’d give anything to have one last a long, expansive argument with her about anything. She was at her best on the back foot, fighting her corner for others.
It’s so fucking taxing: grieving and caring, simultaneously.
"Self care is not self-indulgence. It's stewardship, so that your love gift to the world may be made complete."