Susan’s day started the same way it always does.
She got up earlier than usual to get a jump on the day. Got her Mom ready for the Adult Daycare Center. The bus arrives at 8:00 am sharp.
She changed her Mom’s diaper, dressed her, fed her. Prepared her snacks, made her bed, cleaned up the room a little bit.
Spent some time talking to her while the bus arrived. Small talk… reassuring talk of what a great day she was going to have today. Alzheimers patients need to be around positive people and environments.
After her Mom got picked up she filled two new prescription orders with her local pharmacy, started planning the calls to 3 different doctors offices to schedule her next appointments sometime in the next 2-3 weeks…
And put the reminder note on the fridge door so she wouldn’t forget, the she hit the shower.
It was 8:10am and Susan needs to be at work by 9:00am. It will take her 35 to 40 minutes to get there if traffic cooperates. Big meeting today with all department heads.
After the quick shower she gets dressed, gulps a piece of toast and washes it down with some OJ. She notices the fridge looking a bit empty, it’s time to go to Publix, second time this week and it’s only Wednesday.
Her day at work is filled with your typical managerial and leadership tasks.
Manage your team, support their initiatives, stay on top of the numbers, never micromanage, figure out what kind of day your boss is having…
And of course worry about what kind of day your mom is having in a place she doesn’t feel comfortable at and has been wanting to stop going.
This is a normal and often seen reaction by Alz and early onset dementia patients.
Susan is divorced. Her kids are awesome, both of them in State Colleges, easier on the pocket.
Susan’s well aware she’s a card carrying member of the sandwich generation. She misses her kids when she has time to remember them.
She’s worried the aide from the home care agency won’t be at the house by 4:15 pm.
The bus drops her Mom off by 4:00 pm and she needs someone to be there to make sure she’s safe.
The last two aides she got through the agency were always a few minutes late and that always stressed the life out of her.
She checks in with the aide and implores her to be on time. She’s reassured of it. She still worries.
She won’t be home until 6:00 – 6:15 pm, so she depends on a total stranger to care for her Mom for a couple of hours.
For those couple of hours the aide will feed Susan’s mom the snacks she prepared, help her bathe, keep her company, and perhaps do some light house keeping.
When Susan gets home her mom is usually lively and talkative. Susan is drained, exhausted and sometimes, not always, in a bad mood.
She always brings work home, and still has to be there for her Mom…
It’s like punching in for a second shift at work. She gets her ready for bed, fixes snacks for tomorrow, and prays she has a good night sleep.
Lately her Mom has been sundowning,
Which completely eviscerates Susan of any energy management strategy left in her.
Either way, she needs to use whatever time is left in the day to get ready to do it all over again tomorrow.
Weekends are even more stressful. She only has a couple of hours a day of respite care, which she uses for personal care type help.
She spends weekends basically caring for her Mom. She has 2 sisters and one brother.
They help her when they can, but she bears the brunt of it. Her weekends go fast because there’s always something to do.
When you’re a caregiver, your day is 36 hours long. But it shouldn’t be.
It’s Monday morning, her Mom woke up twice last night. Susan got four and a half hours of sleep.
A typical scenario for family caregivers.
How long can she function at this pace before her body and mind completely disintegrate?
Susan’s facing the number one caregiving danger every family faces: caregiver burnout.
She’s making a few mistakes, but she’s doing the best she can.
But she needs to start making smarter decisions. Or she’ll be joining her mother in a hospital bed right next to her in less than two years.
That’s what caregiver burnout can do to you.
Here are some suggestions on how Susan can outsmart caregiver burnout:
- Build a stronger team around her. Get her brother and sisters involved in companion-like tasks so she can have some respite. Lack of respite is the number 1 reason caregivers crash and burn. They don’t have any time for themselves. It’s not the caring for a parent or loved one that burns them out. It’s the lack of self-care.
- Request more hours of companion and respite for her Mom from her LTC program social worker. They are usually very sympathetic, even when they deny them.
- Build a strong relationship with the homecare agency involved. So they try their best to find you aides that you can build a long term relationship with. Alz patients can live with a progressive decline for up to 11 years. You need to think long term. Treat the aides like family, they appreciate it and will reciprocate in kind. You will deal with some bad ones. Don’t fret, be patient. Keep looking.
- Now that you have more time to yourself. Exercise, drink lots of water, go to the beach, spend time with friends in a social setting. Try sitting meditation, listen to music, read, write, run, swim, walk, dance –anything that keeps your mind focused and your body in motion. Except when you meditate, unless exercising is how you like to best get in the zone.
- Have a problem solving mindset. Envision your ideal solution and work your way back from there one step at a time. If an option is to get some private duty help because your insurance is maxed out. Then budget for it, figure out what that looks like and do it. Is the best money you’ll ever spend on yourself!
- If you’re angry, work it out. Talk to someone, dilute the anger with something positive. Replace it with something else. I know you didn’t ask for this, but nothing good comes from fighting life’s natural events. And something good always comes out of bad situations. Accept it, outsmart it, and come out a better person on the other end.
Susan has options, like the rest of us do. Giving into caregiver burnout is never and playing the victim is not one of them.
I know it feels like you’re in a dark caregiving alley with no apparent way out. But that’s your mind playing tricks on you.
Build a team around you, rally your troops for a common cause, and be patient with the process. Is not Control you’re after, is Acceptance.
That’s how you beat caregiver burnout for good.
Smile, go slow, and breathe. – Thich Nhat Hanh, Buddhist Zen Master.
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