souls between stars services

Advocate and Diplomat

Here is some context. I was staying with my dad 24/7 in order to keep him safe through the hip recovery process while planning a funeral for my mother. I needed help from a person who is utterly competent in the hospital/hospice/nursing home setting but also not addled by blind faith and medical hero worship. I needed someone, like me, who could stand up to the situation without making anyone personally upset. I needed the energy of an advocate and a diplomat. I needed someone who could understand my dad’s priorities did not always align with the hospital priorities and I wanted his priorities to be manifest as much as possible.

Upholding All Sides, Especially Mine

My dad did not understand why anyone thought he needed four point restraints and he was deeply traumatized by them. Being tied up eroded his faith in the goodness of humans. The hospital personnel had objections to the risk that he might get out of bed, pull out his tubes or respond to them with the rage that he, a citizen, was being assaulted by people paid with his tax dollars. Have YOU ever thought what it would be like to be locked up because someone decided you are nuts and you have to convince them otherwise?!?! Neither my dad nor the hospital staff could grasp each other’s points of view. But Keshia could understand all the sides AND me. At 96, he was surprisingly strong but not particularly dangerous. Keshia was like an extension of myself who could let me rest and regroup. She had the compassion and skills for letting my dad’s version of reality live in their interactions while keeping him safe and the drug-pushing, restraint-happy hospital people sufficiently mollified. She showed good judgement about when to dial 911-daughter so I could show up with a nice clean velvet glove on my iron hand.

Existential Literacy

I thought I only needed a few weeks of assistance but it turned out Keshia was on call and by his side day-in-and-out for two years sharing his feelings, his ups and his downs. Keshia was fearless about fears and never shied away from the reality of life and the various forms of suffering he endured as he made his way back to the nursing home and slowly lost the abilities he had left. Obviously he thought about death and couldn’t necessarily share as freely with me so, because of Keshia, he was not alone with these big and important questions and aspects of existence. 

Keshia’s Unique Quality Among Doulas

Other end of life doula’s are more for intense, short-term emergencies and bless their wonderful hearts for that capacity. Keshia certainly possesses the ability to be present day and night when required. And yet she has something more. She has unbelievable endurance. Quite unexpectedly, she was willing to and continued to work with me for two more YEARS. That’s why you should choose Keshia if you don’t know how long you will need help or if, like me, you don’t know what you’ll really need. I gave myself the accidental gift of achieving a new level of greatness in daughterly support because she became the right to my left, the up to my down, the one who could be there in ways that I suck at but that my dad benefited from. I don’t have the patience by myself that we had together.

Reasonable Boundaries

When the nursing home offered behaviour drugs, I offered more Keshia instead. I could only do that because, when Keshia commits, she commits. She has work-life balance as well. The limitations that she needed me to honour were reasonable and easy enough to work with. Those were the boundaries that let her bring her A game most of the time and to have awareness and strategies for when she, too, might have been a bit overstretched.

How a Death Doula is not a Nurse nor a Companion

My dad never got her name right but his face lit up like high noon whenever he saw her. Not to mention, the staff at the nursing home delighted (eventually) in her presence. The only element that was a challenge at first is that they didn’t understand why, from their point of view in which the work of care is personal care like bathing, feeding and dressing, that Keshia gets a much higher hourly rate than they do or than a traditional companion would. She seems (at first) to be a companion. I must say that I also had a world class companion for my dad and I value that role as well.

Lifeguard for Body and Soul

It took a few weeks or months for each of the unit staff one by one to understand two things. First, although they, too, might love to have the time to sit and chat with or do art with my dad, they did not in fact have that time and leeway. Second, many more people can hang out successfully with you when all is basically well and something nice is happening than can be with you when everything is wrong and bad and you want to die right now. Keshia doesn’t do personal care. She’s capable but it’s not her jam. Keshia is well equal to being your companion on a good day. But what Keshia has all over any other type of helper that I could have hired is GRAVITAS. It wasn’t until the staff witnessed Keshia kindly and respectfully engage my dad through a storm and walk beside him through a long, dark tunnel of despair that the staff started to understand why she gets paid the (actually not particularly) big bucks. She certainly saved my dad’s life several times by bringing urgent, overlooked needs to the attention of the staff and me. She helped us all do our jobs.

Keshia Added and Kept Open More Options

During a scheduled session if my dad was asleep or not receptive, Keshia was receptive to cutting the session short which helped her to be more available as needed. Eventually the staff were even willing to signal WHEN she was needed. That made her support more efficient and less expensive at the same time. But there is naturally a significant portion of time when a doula seems to be impersonating an ordinary companion. I suppose it’s like the way a life guard seems to sitting around beside the pool some of the time. The fact that she was available gave me a counter argument when the well-intentioned white coats inevitably brought up behaviour drugs. Not to mention, she valiantly worked all the technology and kept my dad in touch with far flung people in ways that I had far less patience for. His friends and family told me so at the funeral. And actually, the nursing home “white coats” were also very good, kind and receptive. They were just recommending the tools they had at their disposal. But I had a Keshia-shaped ace in the hole to keep my dad as lucid as possible and in touch with his people. I defined my job as to push back the forces that were causing my dad’s world to shrink. Keshia was magnificent at pushing back those forces.

What I Will Do Now I Have Learned about Death Doulas

If I had my parents’ deaths to manage over again, if I couldn’t have been there for them or as I get ready to plan for myself, here is what I will do. Now that I know what I know, I will set aside as much money as I can in a separate fund for end-of-life or dementia doulas. It could even be a trust fund if I have no one to manage my money. Whatever is left can still go to my heirs. But, if there was ever anything worthwhile to spend my money on, it’s end-of-life and dementia doula care. I will make a reasonable arrangement with my chosen few doulas or I will direct whomever holds my power of attorney to engage this kind of help for me lavishly as needed. I will write or communicate at length about my priorities. I will give myself the opportunity to discuss my fears and concerns with either my support team or even the local doulas themselves. I will certainly choose Keshia if she is available but also others because I might need more than one or they might not all be available when the time comes.

What to Get The Person Who is Dying

For myself, I can almost promise I will not choose MAID although I wouldn’t remove that choice from another person. But I will choose top-notch, invaluable end-of-life support. If I am fortunate enough to be able to afford it, I cannot think of anything more valuable to spend my money on for my own sake. If I had it to do again, I would spend next to nothing on the funerals (which were ungodly expensive). I would spend it on my parents’ end-of-life care instead. Doulas, doulas, doulas.

The Value of a Better Ending

I personally do not believe that MAID is always chosen because the choosers are intolerably suffering at the moment. I think many people choose MAID because we fear suffering and a loss of control and we are trying to get ahead of the expected problem. (And we are necessarily trusting the expert opinions of people who never lose points for things not being as bad as they predicted.) I believe that suffering and a loss of control occur for most people as we approach death. Some kind of suffering and some kind of loss of control are part of the price of admission to life in the first place. But suffering alone and losing control among people without the gravitas and leeway to show me deep respect and compassion is an entirely different experience than the very same suffering and loss of control surrounded by people with wisdom, a greater perspective, who show me love, demonstrate that the world and its people are good and that I matter. In my opinion, my dad did some of his more important work as a soul after and perhaps because he started suffering a loss of control. An end-of-life doula of Keshia’s quality makes palliative care a completely different and better experience. My dad and I would have missed so many good moments without his dying a natural death in his own time.

My father died in Keshia’s arms.

Katherine W.