Hello! My name is Heidi Good Swiacki. I have been married to Steve for 25 years, which has been filled with laughter, trust and love. We have 2 great kids, Ashton 22 and Chris 16. I have ALS, aka Lou Gehrigs Disease. I was officially diagnosed March '05, I was just turning 45. This blog will be about a myriad of topics. I will share my ALS story which will hopefully encourage others. It will show that quality of life comes in many forms. I have to tell you up front that there will be some spiritual references. Don't be afraid or turned off by that. Since I have had ALS I have seen many miracles. Let's be realistic, who can be a happy, non-verbal,ventilated quadriplegic without Faith? I hope you will join me and make this an interesting, educational, inspirational forum. Humor and the ability to enjoy life is required! :)

Heidi passed away 3-25-13 :(

August 4, 2013

Hello, Steve here. To help with the healing process, I am going to continue on with Heidi's blog, primarily talking about our lives and how we as a family are learning to live on with Heidi's memories pushing us forward. Topics covered will be geared towards the affects ALS has on loved ones.

Saturday, November 8, 2014


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.

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