A Great Loss with Many Lessons

Looking back, Marjolein recognizes that her husband’s symptoms started occurring in 2015. At the start, Peter’s disease progression was gradual and very predictable. Unfortunately, this disease is untreatable and typical survival rate is three to five years. Marjolein Grootenhuis shares the story of losing her husband Peter, to amyotrophic lateral sclerosis (ALS) in August of 2019. See the entire video interview with Marjolein at her San Diego home below.

Full length interview, about 20 minutes.

ALS is also known as motor neurone disease (MND). It’s also referred to as Lou Gehrig’s disease. It causes the death of neurons that control voluntary muscles. Early symptoms are generally painless but progressive muscle weakness is the most common initial symptom of ALS.

As a scientist, Peter accepted the reality of his situation but that hardly made it any easier as things progressed.

Marjolein and her family did the best they could to support him with the best hospital care possible. But eventually, the limits of medical care in a hospital setting peaked and Peter chose home care for the final chapter of his life.

End-of-Life Care and Hospice Care

Caring for anyone is demanding but caring for someone with such a complex and devastating disease as ALS can be overwhelming. It eventually became clear that Peter required more care than family members could provide yet he was committed to remaining at home.

Marjolein understood the importance of hospice but also felt overwhelmed by the number of hospice choices in the San Diego area. Her experience of healthcare in her homeland of the Netherlands would have been much different than the medical care in the United States. Marjolein said that in the Netherlands, “Your GP is someone who comes home to you and helps you with things and who will direct you to different medical organizations or professionals.”

Overview interview with Marjolein. About 6 minutes.

Home Care in America

But our medical system doesn’t work that way. Typical insurance-based care would not cover a home visit by physicians and social workers. Marjolein and Peter wanted 24/7 care as well as the guidance needed to direct a stressed family to the right people and the proper resources for the care they desperately needed.

As the story unfolds, Marjolein had the fortunate opportunity to discover Integrated MD Care and the founder, Dr. Bob Uslander.

Marjolein said, “He’s a professional and he has experience… so we trusted him… he’s someone who is very kind and he’s clear. But he’s in control when you’re not in control. What I love about Dr. Bob is that he knows when he needs to come in and when he needs to come in quickly and powerfully. He also knows when he needs to withdraw. Bob was very sensitive when we needed time to just be together and talk or just be with each other or cry with each other… and when we needed some guidance and counsel from him as an MD.”

Healing Begins Before Life Ends

It’s clear from the video interview that Marjolein and Peter had a very special relationship and, that Marjolein is the kind of person that feels she can be helpful to other people by sharing her learnings from one of life’s most challenging events.

Seeing a loved one pass is always difficult but with the right care, symptoms can be managed, pain can be eliminated or reduced and the mental, physical, emotional, and spiritual challenges that come with the dying process can be cared for as well. An equal amount of attention and care must be given to family during this difficult time to allow healing to begin, even before the final breath.

Marjolein says, “I want to thank Bob for being there when we needed him. And I just knew that he cared for us and I knew he was there when we needed him… you know, when you feel like the whole ground is disappearing under your feet.”

If you or a loved one are facing an end-of-life situation, we invite you to watch the full version of Peter’s story to help you understand some of the resources available to you and your family.

We also encourage you to schedule a no-obligation phone consultation to help you with your unique situation. Contact us here. 

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