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.

Friday, October 12, 2012

Meet the Caregivers

I don't feel well. MBattleship, excellent movie. THEN the weekend continues with Still Steve as the daytime caregiver. AS you can see. , are a team and it amazes me every day the love, patience, Grace and caring these women show me; no matter what. I could be down, frustrated or angry and they are there for me, wiping my tears and making sure I know they care and they love me. These women are strong in their convictions , their faith and their opinions. I trust each one with my life, I have to. That was a very humbling hurdle for me. Each woman brings something unique to the team which makes us one heck of a unit. I have been known to be a little controlling so sometimes there are sparks. Like sisters we get through it with as much grace and mercy that we can and always with love. So ladies , if you are reading this. . . . . I love you, respect you and appreciate you. My heart is filled with thanks. Wanda
Wanda and I met through a mutual friend, Sandy. I was still working with Lucas and Lewellen Vineyards but had moved my office to my home. I was still able to move a little and was using a walker. I was still able to talk. My husband, Steve suggested I get someone that can help me with my physical therapy and be with me as I adapt to the changes I would be experiencing. (Always thinking ahead ) . Wanda and I met and there was an instant connection. She had worked with people for 25 years, from caregiving, hospitals, nanny, teaching and the movie industry. I was her first person with ALS(PALS) but she had plenty of experience with physically challenged. She started out part time and as I adapted to the progression , so did she. She worked days and some nights, to give Steve a rest. As the ALS took over, I needed to be turned at night every few hours, to prevent bed sores. She has been by my side for 51/2 years. Her spiritual and encouraging words are uplifting and positive. We have both grown so much during this, through hospitalization, losing the ability to breathe, to talk , to move. She has mastered all of the equipment and I rely on her expertise for everything. When we go to see a doctor, they ALWAYS say how lucky I am to be with her. I am truly blessed to have a friend like her . Wanda has blessed my life with her caring, empathy and patience. Oh yes, and she got me addicted the the daytime soap, The Young and the RESTLESS : )
Sherrie - When you have a tracheotomy you are not allowed to leave the hospital unless medical personnel are set up at home. Their responsibility is to train the family and other caregivers on the machinery and how to treat the patient. Through the home agency I used I met many wonderful people. One in particular, Sherrie, not only worked with the staff but also became one of my night caregivers. She is an RN and a FNP (Family Nurse Practitioner)so she has a lot of medical knowledge, which was very helpful with all the new machinery. More then that Sherrie and I have become great friends She is a very spiritual woman, a solid Christian. She has helped me explore and expand my walk with God. She says that God put her here for a specific purpose. Sherrie and I just had our 4 year anniversary.Time flies. I feel very blessed to have her as a part of our team.
Annie - she is my Earth mother, very spiritual, believer in a holistic life, very one with the universe. Always a positive attitude and she believes we are put on this earth to help others. We met through Wanda, Annie was taking care of a gentleman confined to a wheelchair. Annie and I have been together for over 2 years. She works nights and fills in for Wanda if she takes a day off. We like the same tv shows and are both obsessed with cooking, recipes and cooking shows. Her care and concern for my well being is very genuine, .
Steve is my primary caregiver and he has the toughest job of all. He commutes to SB every day, works 50+ hours/week and then comes home to take care of me. On Fridays I call it our date night. Steve takes the night shift and we watch a movie.Battleship was last night and we both highly recommend it. He is the one I want with me if things aren't going well or a if I don't feel well. HE is my earthly rock. A remarkable man.
Left to Right : Katie,Cousin Carol, Rosa, my mom Rosa and Katie: These women have moved on in life to other work but they were instrumental in my good health. Rosa is very maternal, motherly. If I wasn't feeling well, or just having a rough day, she would wipe tears an offer motherly advice. I cried on her shoulder many a night. Rosa was also recruited by Wanda to work nights. She is a very quick learner. Annie took over Rosa's shifts. She is Hispanic and communication sometimes got comical, especially when we used the Letter Board but we always made it through . Katie is a sweetie that was just launching her career as a RN. She reminded me of Ashton and I enjoyed watching her go through the process of growing up. Katie joined our team through an agency , she worked primarily on the weekend . I think I re-lived some of my youth through her. She learned a lot when she was here and I hope her practical experience helps her in her new job at the Santa Barbara hospital. I was able to watch her fall in love and get married. I am truly thankful for that blessing. )
Last but certainly not least - MOM. My mom is 86 and has the spirit of 40 and the energy of 60. She gets a daily report from each caregiver, keeps the house in order, helps with Chris and sits with me between shifts. She is Wanda's wing man when we go on outings. It's difficult to live with your mother, most difficult for Steve. But we make it through. It's nice to have her here. : .

2 comments:

  1. Thanks for posting an update. I think of you often, Heidi, and pray for you and your family. So glad to hear you have a good support system, especially Steve and your Mom! Chris is one lucky kid to have his Grandmother so close by!

    Elly Phillips Cyr
    Dana Hall Classmate 1977

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  2. Ha! I love this comment: "I have been known to be a little controlling so sometimes there are sparks!" That my Heidi Control Freak!

    You are so right to remember to have gratitude for the many blessings that are right there close to you in the form of people who love you so much. They are grateful for you too!

    I love you. Thank you for the update.

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