It's so scary being a caregiver and getting sick. I was in the hospital in January with massive ulcers in my esophagus, stomach and intestines caused by medication. Frantic, I had someone take care of Ryan in an emergency respite situation. Whew! Then my hip started spasming and I ended up in surgery with a second hospital stay and MORE emergency respite. Fortunately for me my workplace allows PTO (paid time off) so I didn't miss wages, Ryan has IRIS funding so that paid for the emergency respite but I have to tell you ... no matter how well you think you're set up you cannot do it alone!
I have trusts set up for Ryan, guardianships, emergency plans etc. but without my friends and family I would have been lost. My mother stayed on the couch for weeks, my brother helped with respite for Ryan and set up equipment for me, my faith family brought in meals, helped rake the lawn, sent cards and encouraging notes, hooked up wireless for me so I had something to keep me occupied and in touch. I was truly humbled by the number of people who sent flowers, cards and visited, to say nothing of the prayers that came my way. What a God send.
All that to say
- If you're not connecting to a faith family, you need to be.
- Set up the emergency plans but be ready to deviate from them if necessary.
- Find out ahead of time what benefits your company has for short term disability.
- Check with ADRC (Aging and Disability Resource Center) for help
- Find out who can help pay for emergency respite workers
- Set up respite workers ahead of time and USE them
- Help others when they need it, what goes 'round, comes round.
Most of all, prepare for the worst case scenario but believe in the best outcomes. Remember, I'm out here too, muddling through. Hang in there!
Love and Joy,
Karen
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