The Samurai Caregiver

Posts Tagged ‘dad

Today is the fourth in a series of events where I’ve delivered a presentation to caregivers about the care giver and the care recipient being a team. In the middle of todays presentation, as has occurred to me all month, it dawned upon me that I’, not ready yet.

Though I’ve become somewhat adept at talking about various aspects of caregiving and weaving my own story in regarding that which I do for my Mom, I am apparently not ready yet to talk about what I did for my dad.

He passed June 2, 2011.

I haven’t really been talking about that yet, not publicly anyway. And yet I would feel remiss in these forums if I didn’t at least try to broach the subject of the care I undertook on my fathers behalf, for his behalf until he passed.

Apparently, I’m not ready yet.

Its still kinda new and very raw for me I guess. His passing wasn’t a surprise…but I wasn’t ready for the finality of it all.

Who ever is…really … I mean, coming to terms withe the finality of it all.

I wonder how long it’s gong to take the ‘yet’ time to pass. I know the answer is “it will take as long as it takes and then some”, but I still can’t help wondering…

You know I’m a planner; the consummate project manager. We’re used to having a definite time line for start and stop dates, durations, etc. This type of feeling, this ‘yet’ certainly doesn’t fit very neatly into our little project management boxes.

I was more of a care director than a care giver with him. He rejected much of what I said to him beginning last August all the way through to his transition in June. His rejection of offerings of assistance we’re sometimes painful, but I knew my father, and wouldn’t have expected anything less out of him. The balancing act between doing what he wanted and doing what was needed was very frustrating and tiresome; kinda like dealing with a very competent terrible two’s type of tyke who just happened to be 88/89 years old and still wanted to kick it one more time, stay in control until the very end.

I’m sure you’ve heard of the phrase “The mind is willing but the body isn’t able”. That pretty much sums up the situation with him. Watching that nimble mind deteriorate rapidly over the course of the last ten months of his life with a body that exponentially continued to refuse to cooperate… with me constantly getting caught in the middle of his wrath of cross hairs wasn’t fun at all; but it was where I needed to be…and so I was.

So… to that end, what I’m trying to communicate here is  that I’m not ready yet and really don’t know when I’ll be able to add Daddy to my stories and experiences of caregiving. As with him, I must continue to remind myself that guess patience is a virtue and that I need to extend and accept a little of the patience I’m able to exercise with others with me as well for the time being.

I miss you Dad; more than I realized or thought I would. I love you so very much! I hope you’re acting out true to form in heaven, being as cantankerous as always (like Fred Sanford) and giving them hell up there too, enjoying every minute of it!

(originally posted 5-13-2011)

Life continues to test my mettle and has now added my father to the challenge. Things are a little different this time as he’s not physically with me – and his diagnosis is deemed as terminal. So, in addition to being the ‘strong, caring and efficient daughter and caregiver’ for my mom (who is here with me) for the past 16 years, I’m having to duplicate all of  that  – and then some – with my Dad who is 12 hours away by car.

This was not totally unexpected – but the timing couldn’t have been worse. (Rhetorical question – Is there ever really a good time?)

To say I’m feeling like a little bit like a rubber band would be quite an understatement. It would be nice to know beforehand what my breaking point is before I reach it so that I can avoid it. I’m not superwoman and I’m not trying to be. That song ” I’m Only Human” is playing over and over in the back of my mind as I write this – I guess a subliminal message for me to remember this as I handle the both of them simultaneously , and try to keep things in perspective.

Twice with him in the last eight months I’ve had to make the dreaded yes/no decision with emergency room physicians on the other end of the phone, pressing me to say whether he’s DNR/I( do not resuscitate / intubate) or not. Right in the middle of him bleeding out or pulse being barely palpable or him being cold to the touch, I have to reach deeply and think quickly about whether to say yes or no and what it mean to say either.

It sucks having to make that decision under duress that way. (It sucks having to ever make that decision , period , but I digress).

For some to have the decisional power of life and death over another person by simply having to utter a mono syllabic word would be the ultimate ego trip for them. To a gambler, its a dream come true – you’ve got a fifty fifty shot at it and all bets are on. For those hung up in the “rightness” or “wrongness” in making such a decision and guilt themselves to death based upon the outcome of the decision should not be the one to have to make the decision as there is no right or wrong decision to be made at that split second; just the best one that can be made under the circumstances, based upon the information given to you by the physicians, your knowledge of the person , their wishes and the situation. I’m not implying that knowing any of this makes it any easier…but there is the saying that “making no decision is making a decision”…and this is one of those times in life when being indecisive is unacceptable.

Each time, so far, he’s remarkably been able to pull through, be admitted to ICU, put on a ventilator, get transfused, have surgery – only to express while on the vent disdain and be angry with me for calling 911 on him. Whats a girl to do? He refuses to sign an advance directive but fusses at me after he wakes up. They extubate him from the ventilator and what does he say? He pulls me down close to him, snarling and growling and says “its a hell of a thing to go to sleep and wake up here.”

I haven’t figured out quite yet if that’s a ‘thank you’ or not.

Oh well…

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The Samurai Caregiver

Sybil L. Ingram, MBA, Ph.D.

Dr. Sybil Ingram is a respected and experienced professional in the areas of healthcare information systems and regulatory compliance issues with significant knowledge on INFOSEC, NIST, FISA, FISMA, CFR 210,211 & 820 as well as Lifespan Respite Care Act regulations. With over twenty years of healthcare experience, she has been one of the nation's foremost speakers and active consultants for the HIPAA implementation challenges, addressing all major aspects of the Administrative Simplification Subtitle and affected entities/stakeholders. Dr. Ingram has served as a clinician, clinical researcher and instructor, emergency preparedness and readiness specialist as well as serving as an independent validation and verification compliance manager for multiple national providers of healthcare services. She has held key positions for healthcare industry leaders such as HBOC/McKesson, Johnson & Johnson, Abbott Labs, the Georgia Technology Authority and the Centers for Disease Prevention and Control (CDC). In addition, Dr. Ingram is nationally board certified by the American Society of Clinical Pathologists, a former associate with the American College of Healthcare Executives, founder of Ingram And Associates, a certified INFOSEC professional by the Information Security And Audit Control Association and the US National Security Agency. As a volunteer, she is an active senior Georgia state representative for the National Family Caregivers Association and has an inventor's patent (pending) registered with the U.S. Patent & Trademark Organization. Dr. Ingram speaks nationally and internationally on topics that address information privacy and security as well as family care giving issues.

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