Steve's end-of-life medical & care costs

Dear Friends,

As many of you are aware, Steve Gallegos, my beloved husband, my best friend, is dying. He has metastatic liver cancer. We brought him home yesterday and are under hospice care.

Steve has hepatic encephalopathy. This means that his liver is no longer functioning with any efficiency. Toxin buildup in his bloodstream causes neurological damage. He is suffering from dementia. It is a challenging passageway, physically and mentally. He can’t walk well. He falls. He doesn’t sleep at night. He doesn’t understand his limitations. So we both end up stressed as I try and keep him safe and he hates the restrictions.

It is difficult for me to see how fast Steve deteriorated. Illness, even cancer, horrendous as it is, doesn’t bother me as much as the dementia that is part of this illness. Each day I let go a little more of my own expectation, my own hope that it will loosen its grip, that my beloved Steve will return more fully, and that lactulose, the medication, will work a miracle. At times, he seems more present voicing his thoughts, laughing, and remembering. I am grateful for these lucid moments in the sea of confusion and know they will pass.

Part of me feels sad that the consciousness he hoped to embrace this passageway with is not possible. No journeys, no guides in any way accessible at least from what he says. There have of course been beautiful moments like the morning he spontaneously spoke of or prayed or surrendered his body to the light. Or when he speaks of his love for me and what it means to him that I married him. Or of his love for his daughter Nikaya, or for Rosalie, his sister.

But this is what the universe has given us. I can only trust it will be the best path to his death. And as he has practiced in his life, he is unhesitating in integrating this new experience. He is moving through it with speed.

I am currently his only caretaker. He needs 24/7 care and supervision. He is what the medical people call a sundowner. He gets very active at night. He doesn’t sleep but tries to get out of bed and go places constantly. Every few minutes for hours through the night, he gets up and gets out of bed. I fell into a deep exhausted sleep at about 4 am this morning and he managed to get out of bed, into the corridor where he fell. Thankfully, he wasn’t injured, but we had a tense half hour or more as we tried to work together to get him on his feet and to walk back to his bed.

I cannot do it all. I need help, and I need help from people who know how to be with his condition. I also need some tradespeople who can help me create a safe space in which he can walk, and to place some safety barriers, rails, stair rails, grab bars etc. I need to purchase the materials. That means I need to employ a few people. These costs are not covered by insurance.

(Eligio Stephen) Steve Gallegos has offered himself and his Deep Imagery work to the world for over 40 years. His method of Deep Imagery and the Personal Totem Pole Process has helped people worldwide for decades. The animals (as those in the work might familiarly describe it) came through him in a visionary experience over 40 years ago and he shared them unstintingly with the world. That initial experience of the healing his inner guides offered gave direction to his life path. He has given himself and his time, generously, heartfully, and caringly. He never turned anyone away for any reason.

Steve loves his work. Just last week, after he had completed guiding someone, I checked with him as to how it had gone. He said, “Well, I may be a little crazy but I’m a damn good therapist.” And he was and is. He loves teaching people about growing, about wholeness, about their own unique aliveness. In these last few years, he got such joy from staying at home and teaching the Deep Imagery Training program and from guiding individuals online.

He was never greedy or focused on money, going badly into debt many times as he traveled and taught and helped people embrace their deep aliveness. Despite the hurts and betrayals that sometimes happened with people he had loved and trusted, he always saw these occurrences as parts of the path, of places where some people got stuck in their growing. He never judged. He was not perfect himself. He never stopped paying attention to his own growing. He felt such compassion when someone thought they had “arrived”. For him, growing is endless. It may not even stop with our last breath. To arrive, to halt one's growing or to limit any possibility was anathema to him.

There is no pretense in Steve. There is no malice. He plays no games. He has never been good at understanding or following social cues and expectations, which has sometimes led to misunderstandings. In many conversations over the 25 years we have been married, Steve would describe a past situation that still puzzled him and would laugh with astonishment when I suggested what he might have missed. He recognized that there were places where he was blind. He often felt that his obtusenesses protected him from taking a less than ideal turn on his path. He trusted even what seemed to others to be mistakes.

Steve loved the community of the animalwork. He loved our festivals and gatherings. He delighted in seeing individuals grow and change.

We ask that the greater community now support him as best you can.

His life expectancy is between 0-6 months but I doubt he will last anything close to 6 months. However, he might. Hence the unknown as regards the exact amount we need.

Here are the details I know.

Costs to date, over the last 4 months: $15,000. On credit card.

Anticipated costs:

Hospital Stay last week: $26,000. The hospital business office says that the final tally will be more because not everything is in yet.

Caretakers: I have been quoted between $25 and $40 per hour. I need someone for either overnight or day time care/supervision. The estimates are as follows:

Ideally, 1 caretaker for 8 hours overnight for 7 nights.

Cost per week is between $1400 and $2240.

For 1 month: $5600 and $8960

Ideally, 1 caretaker for 21 hours each week, 3 hours per day @ $25 per hour.

$525 per week; $2100 per month.

Tradespeople:

Minimum of 12 hours at $30 per hour: $360

Minimum of 6 hours skilled labor at $50 per hour: $300

Cost of goods/materials: $600

Ambulance: probably in the region of $3,000 for the ride home.

Funeral costs: $1200 to $8000.

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If Steve were to die in the next few days, we would still need at least $50,000.

For 2 weeks, including caretaking and expenses: $57,610.

For 1 month, including caretaking at the lowest rates and expenses: $66,460.

This does not include the final tally from the hospital as they cannot give it to me yet. Nor does it include the more expensive rates for caretaking. Nor does it include the costs should Steve rally and live for 6 or 8 weeks more.

I am grateful to everyone who has helped.

Thank you,

Mary