CHOOSING CARE-GIVERS

Heidi and I had no experience in how to safely choose caregivers. We knew as ALS took more of  her body, that she would require 24 hour care. So we approached this like everything else, research and word of mouth.

Most if not all of your 24 hour per day expenses will be out of pocket. If  you cannot afford the costs, care-giving responsibilities fall on the spouse, children and adult parents. I wrote about the perils of having parents move in to help with care-giving responsibilities. Weigh this option carefully.

People asked why don't you use medicare/medicaid provided care. We tried this, there is not really that much coverage extended and the people provided are not trained to address the critical care needs of a quadriplegic. The one time we did do this, the person dropped Heidi and they had to call the fire department to safely pick-up Heidi's limp body. Heidi loved it, she was surrounded by 4 young well built men who all supported and carried Heidi to bed. Heidi smiled for days after this.

If your lucky and have PPO insurance, they will cover about 2800 hours per year with a licensed care provider. We were blessed, to have blue cross PPO at first which provided  wonderful, caring RN/LVN's that all had critical care experience. Caring for a person with ALS does have a learning curve, but they all caught on quick to Heidi's particular needs. The most important aspect of being able to afford a licensed care provider is that all nurses are screened, insured and bonded.

The next option is hiring care-givers who have life experience's as their base, but are not medically trained. So  you go through multiple interviews, letters of recommendations etc. but in most instances you are unable to call the references as they had passed away. Once chosen, your really rolling the dice on mental stability, honesty and integrity.



Thank you for reading.