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An Open Note – Out of Context

Many could and are welcome to add to this. It is entirely out of the context of art making; then again – nothing is out of the context of art making.

My most loved friends are at the point in their lives when they are touching the tip of the iceberg that is the end of life journey with a parent. Our conversations have led me to write this. The thoughts here are more about personal relationship and not so much about medical advocacy, etc. As you know and have heard medical advocacy is key. Ultimately, it goes hand in hand – an intimate relationship with the parent at this time makes the advocacy happen – at least from my perspective.

I am no expert –no one can be – this is an unknown. But I have been a partner in the death journeys for a number of family members. I offer my experience, here, humbly.

  • This can be a 6 month journey or a 10 year journey.
  • Do not isolate yourself or allow the situation to isolate you. Any number of reponces can still lead to your isolation. Some in this part of their life may face it with great anger, they can and will become needy, at times perhaps wanting no one around but you. They will want to fight it all the way and you and everyone else as well. Some parents will say it is a fact of life and go from there. Some will be joyful and sweet; see the humor in it (yet still be sad). But, logically, one person will be chosen to hold the parent’s trust.  Be ready for that and understand your limits. Always be gentle with yourself and with your parent.
  • Ask for help, even for the small things. Some may respond with a “yes”, some may say “no” – but it is worth the effort and the relief to make the call. Those who love you will work to help you if they can.
  • Call hospice, do not wait. Despite other family member’s objections. Let hospice tell you “it is not time”. I will be blunt here. To not do this is cruel and selfish. And further, this has nothing to do with the temporary comfort of the person who is well and of service. This is about the well being and comfort of the parent, both emotionally and physically, to their last breath. It is true, that at this time family members can become selfish. What is important to remember is the amount of fear around death. And that many reactions that you will encounter, as you are holding the seat, will be resistance (including your own at times). Expect it and work with it gently.
  • Don’t let the parent get in the way of their own comfort. Thin line here. If anger is involved; outside support is necessary to help unpack the emotional baggage on both sides – or sometimes just on the parent’s side. That does happen. There can be immense regret that you are not aware of. Dementia is sometimes part of the package. I have not been a parent but have watched many scenarios of those who are. What I will offer is that we start as little curled up creatures sleeping and we end that way. There is not much difference.  There have been many times when I just pulled up a chair and sat to listen to the crying, tantrum or confession and let the energy of the moment pass. I asked questions if it seemed that it would help. This takes time. Sitting and listening time is the most valuable – even if, in your mind, what is being said is “senseless”. Let it be and more importantly, let them “be”.
  • This leads to confessions by the parent no matter how large or small. For years no one has said anything and then the moment comes. Listening, deeply, is the most valuable. There may be years of holding back. You must bear witness, hold graciously, and then allow it to pass. None of this is permanent, really.  The regret, the hurt, even the resolution will pass. There is no need to hold on to it very tightly. Again, let it be.
  • The last thing (and certainly there could be many on this list). In the final day (or days) be there with them to the last breath. Breathe with them, focus on them; and after – wait -be still with them. You have taken them to a specific threshold in their journey, you walk, breathe, emotionally carry them there on your breath. They move on. You are here. There is a specific edge that you will come to and need to let go – just as they are. It is a gift to be there with them. I can, without a doubt say, at some point, you will regret that you were not there – so, no matter what the scenario, do your best to be present.

On this beautifully snowy morning these words are a feeble communication to explain an unshakable rhythm in life’s journey that we often do not prepare for. Your awareness in the moments of that rhythm, no matter how long or short, is vital in the last breath of the person you are with.


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