Tag Archives: end of life

Long week.

It has been a long week, dad was released to my custody on Sunday after a short lunch visit with my mom. They are divorced so she’s off the hook, but offered to help some if I needed. I told her thank you and explained I should be okay for now, but she gave me gas money anyway.

Packing him up was a challenge. His RV trailer home is full of mold (mostly on walls so probably due to ceiling leaks) and smells like urine from prior incontinence problems. I was quite distressed over the state of his living quarters, but did my best to ensure he had everything he would need for the short term. I even tracked down vehicle titles to help make sure insurance processing happened. Then we drove the 5 hours back to Kansas City to arrive at midnight Sunday.

I settled dad into my revamped office, now fitted with a twin bed and shelves for storage. Monday we argued over doctor forms, and he threatened to flush pills down the toilet. I didn’t punch him like our move after I married Nathan, instead I felt sad for his denial of fixable things and the obvious nature of his choosing to die. He eventually apologized for making things difficult and said he would try not to do that again.

Nathan and I have both had to help him with toilet trips and Nathan took the lead on shower assist. We have both helped him change clothes.

It’s not that my dad doesn’t understand those things, it is because he is holding so much fluid from congestive heart failure that he is having difficulty with range of motion needed to complete the tasks. The fluid is also causing difficulty breathing even after short tasks like walking to the bathroom. Today he was able to do restroom visits alone and even got his shoes on by himself. However, he is pretty much sleeping the day away- every day.

There are moments that I wonder if he’ll even make it long enough to move him to my sister in Arizona. Then there are moments where I think he has a chance to pull up if he wants.

Ultimately, I know it is between him and God, and I just feel like he is demonstrating that his scale is leaning towards a desire to check out and meet his Jesus. There have been hours of conversations to that effect, and far fewer conversation moments of the things he wants to live to do.

Regardless, I have had to pull back over and over again. I stepped up and took responsibility when my siblings were unable to meet immediate needs. I love my father, but simply can’t be like him anymore. So I have chosen to focus on him getting whatever God sees as his dominant vibration. Whatever my dad wants in his dominant thoughts, needs to become clear and manifest easily. I am intelligent enough to know that I can not change his mind, but the compassionate side of me wants a quick solution to minimize his self-inflicted suffering.

Beyond that the extreme negativity has threatened my happy space, so pulling back has been a necessity to keep myself buoyant. I finally have found my ability to be somewhat selfish. At least selfish enough to keep my mood mostly intact. I still conceed other things regularly, but my mood is vital. I simply can’t afford to let that slip.

May you have moments of clarity and find a way to help those that don’t wish to help themselves. May you be selfish enough to keep your mood and your own personal necessities intact. May you find a way to love your parent(s) even in challenging situations. May you know how to let God work miracles. May those wishing to die get their speedy painless exit.

Siva Hir Su

Expect the unexpected. A warning.

So, my Dad will be coming to stay with me and my family Thursday. Hopefully very short term since he’d rather be with my sister in Arizona.

The phone call to tell him was uncomfortable and I had to be just like him (again), to get him to hear me. At one point I reminded him that over a year ago I tried to suggest legal documents and processes to avoid this situation. His argument was that millions of people die without legal documents in place.

I reminded him that none of those people participate in western medicine before their death. Either they are too isolated or have something sneak up out of nowhere, like a deadly massive heart attack or traumatic accident.

In his case neither applies.

So this leads me to my fair warning for all Americans that have participated in western medicine and don’t wish to be controlled by the medical establishment.

If you have even a remote inkling that your health may one day lead to situations you don’t enjoy the idea of, then you must act preemptively. If you don’t the medical establishment will take over for you.

Please understand: the rules of Western Medicine is currently in the framework of keep someone alive at all costs. My firm opinion is because it makes them a lot of money. This is because at one point in time it was “first do no harm” and patient rights regardless of their decision.

Currently, if you acknowledge your health is failing and the result is that you wish to go off meds and quit eating, allopathic medicine will label you as psychiatric risk and deem you unfit to make your own medical decisions.

That is essentially what my father has created, and it is compounded by evidence of moderate memory loss. They have decided that because of the beginnings of dementia he must not be thinking clearly. Yet I know my father promised me two years ago, that when he was no longer able to care for himself he would take himself out, without a big mess to clean up. I believe he saw the writing on the wall and decided he had reached that time. Only, he failed at his mission and landed in a hospital due to his pastor’s intervention. Having no legal protections in place, he is now only able to exit the hospital under familial care. Hence me going to get him Thursday.

What he would have needed was a DNR (do not resuscitate) order and living will. They would have needed to be hung at/in the entry point of his small RV home, it would have also helped if he wore the medical bracelet with DNR on it. The documents should also be filed with his primary care provider (MD) and anyone listed as power of attorney. If that had been in place the EMT’s would have taken the documents with him in transport to the hospital and he would have been put on short term hospice until his body gave up.

Legal documents are the only way to ensure someone in the medical system retains all of their preferences no matter what.

The living will is where you can break down all of the things you are okay with or not. For example we’re all familiar with the idea that you can refuse life support in coma situations. However, you can get even more detailed than that. In my father’s case he could have stipulated a do not resuscitate order, but with clarification that if dementia was known or suspected that he did not want any medical interventions including medicines. This would have been a good idea because his sister and mother both died with/because of Alzheimer’s.

You can take it even further and stipulate pain relievers only. You can deem ahead of time all of the many limitations to care which might prolong life. Essentially it ties medicine’s hands for keeping you alive when your body is evidently declining. You can declare no blood pressure medications, no diuretics or fluid corrective medications. You can declare no maintenance medications of any kind. You can even declare refusal of feeding tubes or IV treatments.

These would all ensure a quicker decline and exit of this life.

You do have that right, but only if you stipulate it well in advance, in the presence of legal representation and while in certainty of clear and sound mind.

You must draw up legal documents spelling out in very clear certain terms what is ok, what is not okay, how you define decline, and where you personally draw lines. If you want those choices no matter what, then that is the only way to ensure such, in America at the present time.

As far as my dad is concerned, the social worker did say that his memory loss was mild enough that if he had already started legal documents they could be completed. Otherwise at this point he was able to safely set up a power of attorney and deem who was capable of making medical decisions for him. I’m hoping that he did start documents like he says, because a phone call and signature could potentially finish them. If he didn’t, then it will take a bit more effort, and we may be limited as to what can be done. Regardless, as a family we now have a very narrow window to be able to complete any documents that would save us more costly expenses later.

I genuinely want my dad to have the end of life experience he desires, even though it seems like it would be hard.

This is because I have seen too frequently the medicine version, and it is really no less painful. There are so many problems with the keep alive paradigm, that I can see neither option is stellar. I have seen people propped up on a plethora of medications for a wide array of symptoms. It keeps them alive, but often they can not walk, lose the ability to feed themselves, in dementia they quit talking, and many become bed bound. If it were for days or weeks I could see maybe it was better, but it is not. Western Medicine is great at keeping people alive for years past when their body originally aimed at an exit. I have now worked with a dozen residents that were bed bound for over 2 years. That is not living, that is being alive.

I can see the value in not having that end of life story, but without legal documents your chances of the quick exit dwindle drastically, especially if diabetes, heart disease or dementia is in the records. If one or more of those 3 diseases is your plight, then you are more likely to live 5 to 10 years propped up on medications declining at a snail’s pace and spending a vast amount of time wheelchair or bed bound. I don’t want that scenario any more than my father does, and completely understand his current anger and frustrations. I hope he sees I tried to give him a solution a long time ago, and that I am doing my best to get him a close second even now.

May you understand your health or lack thereof. May you set-up protections for yourself with plenty of time to spare and plenty of time to adjust if you change your mind. May you know how you wish to go and how to accomplish that. May we all be blessed with the quick out-of-nowhere exit from our current lives, but only when we’re ready to go. May any declines be speedy and painless. May our rights be respected even when others disagree with them. May we all know we are loved and supported as fully as our allowing enables. May we know that God is doing their best to give us exactly what we desire and need.

Siva Hir Su