The Samurai Caregiver

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!

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(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…

(originally posted 6-4-2009)

Most of you all know that I have been taking care of my MOM now for almost 14 years. Due to her medication regimen, alcohol has been a ‘no-no’. However, to not be so totally heartless and cruel to this once famously ‘tee-totaler’, non-alcoholic beverages like Sharps and O’Doul’s and Sparkling Ciders for New Years Eve celebrations and the like have kept her quite happy!

As my Fabulous @ Fifty year continues this year, I’ve been blessed with genes, obviously from my Mom’s side, to not really look my age…whatever 50 is supposed to look like…or whatever any age is SUPPOSED to look like…(but I digress)

….but a recent jaunt to the local …uh..BIG-MARTY, with Mom in tow left me/us empty handed as it pertains to me getting her one of her favorite adult libations.

She’s listening to her favorite talk show host out in the car, not interested in having me push her around to day so that she can see the people in the store during our weekly activity to ….uh…BIG-MARTY….and I’m flip-flopping around as fast as I can to get what’s on the list so I can get back out to her as fast as I can. She has , on three occasions tried to follow me into the store after promising me that she stay out for five minutes; fortunately – or unfortunately ( depending on how you look at it) – she hasn’t cognitively put two-and-two together when it comes to pushing the button on the seat belt to unlatch herself. One day while I did a quick trip into the Dollar Store, upon returning to the car found my lovely Louise Mommy with the passenger side door open, legs dangling out, and her hanging onto the upper strap waiting for me to come and untangle her. I’ve learned not to fuss cuz is not a fussing matter; to just be calm, get her fixed back up and ask her , gently – but very sarcastically – “…and just where were you trying to go?” It’s always one place or another, usually she says she was going to walk home – to Chicago – but that’s another story for another time.

BIG-MARTY begins to check me out, eggs, toothpaste, Tylenol, mouth wash – and then comes to a dead stop when they get to the O’Doul’s. The ‘child’ and the register says she can’t sell it to me because “you don’t look over forty”. I blushed (you can’t see it) and tell her thank you, I am so let’s just ring it up. “No, I can’t. You have to look over forty. Do you have any ID.?” I usually leave it with Louise in the car because she likes to hold my purse; it’s her security blanket. I explained, politely, to the ‘child’ that it was in the car, but I wasn’t going to go and get it right now – and that she just sold me mouth wash that had 21.6% alcohol in it without my ID as well as 10% alcohol being in the Tylenol with out ID. O’Doul’s has .5% alcohol in it.

Duh!

(Oh , why in the he!! did I say that!)

The ‘child’ called over her manager, talked her for a bit, who began to look me up and down (in the immortal words of Bernie Mac (like she was getting ready to do something to me) (smile!)) and grunted that in no way was I over forty and for her not to sell it to me until I could prove it.

…do I deal with an irrate, near convulsive Louise later when I promised her a green bottle before nitey nite that night? Hmmmmmmm…..I think not.

Flattery or no? What do you think? I didn’t have time too…just needed to get down the street to get to a store to sell me the green bottle so that I wouldn’t have a green monster on my hands later!

(originally posted 12-9-2008)

I believe most of the evolved ones of us on this site know that there are no coincidences and that there are no accidents…but it sure is interesting to see one manifest as evidence of this universal law every now and then.
 
…this is so weird but I just gotta tell ya’ [grin]
 
Saturday evening, my husband and I rented and watched the X-Files movie that came out over the summer. I am a big X-Files fan so please indulge me for a moment here.
 
Being a professional clinician for almost three decades, I, of course, am always drawn to the medical nuances that are presented to the X-Files character, Scully, MD. One of the  medical nuances she was presented with in this movie was Sandhoff’s disease. It’s a very rare, painful and terrible disease; one that I was unfamiliar with. It was presented and handled very tastefully in the movie. With this terrible disease being considered one as a sure death sentence cure, Scully begins to do her research to see if there is anything out there in the literature that could present her with some option, some ray of ‘scientifically based’ hope that she enact to save a child patient with whom she has developed quite a fondness for. Apparently there is something with this child that resembles the illness her own child had prior his death. Scully was helpless to help him; perhaps that’s why she was so dogged to try to assist this one.
 
…anyway….
 
Scully comes across some research on the internet about some experimental clinical trials that were demonstrating some promise for treating this disease. Stem cell therapy via an intrathecal route. Chances were small for a cure but given the odds of no chances and the hospital preparing to send this child away to a hospice for palliative care, it was better than nothing.
 
So where’s the coincidence?
Sunday, here in ATL, one of my friends announced in a class I was taking that there was a little girl that had a terminal disease and that she wanted us to pray for her. She described the situation …and when she got to what the child was suffering from it was…yes, you guessed it , SANDHOFF’s disease!!!!
 
Yeah…my ears perked up like a dobermans, for sure. I couldn’t believe it! After she made the announcement , I went to her to get the flyer from her to make sure that was what she said. Sure enough, that’s exactly what she said; Sandhoff’s disease.
 
So…I tell her I may be able to get some information to her to pass onto this family that they may want to discuss with their physician and that I’ll get back with her later.
 
…and,  of course, I scurried home and hopped onto the computer, just like Scully, and looked up this disease …and yep, it was there…and yes, it is prognosed as fatal/terminal…and YES! there is an experimental  treatment using stem cells that is promising, but…etc., etc., etc.
 
So, I have passed this on to my friend to pass on to the parents of the little girl…
 
Coincidence?
 
Hmmm…???
 
 (I guess I need to end this with the X-Files theme music playing!)

(originally posted 11-20-2008)

Perhaps in Shakespeare’s time, A rose by any other name would smell as sweet but that’s not necessarily so in the twenty-first century. Today we know that words can inspire us to achieve goals we never thought possible, but they can also fuel ethnic, racial, or religious prejudice. Given the speed of communications in the current age, what was politically correct twenty years ago is politically incorrect today. The meanings of words change in our ever-changing world. Case in point  there are any number of terms used to describe those of us who care for loved ones because of our feelings for them and our sense of family responsibility. Academicians and policy makers refer to us as informal caregivers, a term I personally detest. I know why the term exists. It is meant to distinguish us from those for whom giving care is a job or a profession. And indeed it is important to distinguish us from them.

The academicians and policy makers refer to paid or professional caregivers as formal caregivers to distinguish them from us but to also somehow show that we are linked together by the fact that we all give some sort of care. I always laugh when I hear the term formal caregivers because an image of doctors operating in black tie, and nurses aids in evening gowns, immediately comes to mind.

Today neither of these terms informal caregiver or formal caregiver makes sense, and yet they are so ingrained in the literature and in the minds of researchers and government employees that they are still constantly used. It is hard to break people of old habits, but when words convey a negative attitude, suggest a hierarchy of being, or conjure up pictures that are false then we must make the effort to change them. It isn’t easy, but it can be done. I am sure that all of you can think of words that once were commonplace that are not heard much in public these days.

You may be wondering why I am making such a big deal of this. Fair question. The reason is that so many of us that care for chronically ill, disabled, or aged loved ones feel isolated. Isolated caregivers don’t have a sense that there are million of others, just like them, maybe even four or five in a two block radius of where they live. But how can we locate each other if we don’t have a common name that defines our group, that lets us recognize the commonalities between us?

Recent research by the National Family Caregivers Association (NFCA) and the National Alliance for Caregiving (the Alliance) has shown that many of us don’t like the idea of having a label, or a group name. Participants in five different focus groups held all across the country said in one way or another, The care I give is something that I do. It doesn’t define who I am. That’s true in part, but no one name, title, or group identification defines any of us these days. I am a woman, a daughter, a wife and a professional. I am black. I am one of a group of more than 25 million people who provide a significant amount of hands-on care to disabled or ill loved ones. I am always all of these things, and more, but depending upon the context of a conversation one role takes center stage for a while. So if you agree with me that informal caregiver is a terrible term, what do you think we should call ourselves? A common term is caregiver, plain and simple. The problem with that of course is that it doesn’t tell you which type of caregiver is being referred to. In addition research shows that many folks who would fit under the caregiver umbrella really do not like the word. They associate it with those other caregivers, the ones that get paid. They think it is clinical.

The research shows that many of us are more comfortable with the term family caregiver because it implies the emotional connection between care giver and care receiver, even though it is much less familiar. I find that when the subject comes up, that’s the term I use to refer to myself, and I think it fits quite nicely. In recent years the media has been carrying many more stories about family caregiving than it ever did in the past. Newspapers for instance tend to mean family caregivers when they simply use the term caregiver. Perhaps over time caregiver will come to be the shortened form of family caregiver, but until then I think we should stick with the adjective and refer to ourselves as family caregivers to dispel confusion and to reiterate the fact that our relationship with the recipient of care is one that is based on affection and/or familial responsibility. In addition to the fact that it helps lessen feelings of isolation, there is another very good reason to adopt the title of family caregiver, and that’s because it provides us with some very significant power, power to help bring about changes that can make a positive difference in our loved ones care and the quality of life of our entire family.

Many of the family caregivers that are uncomfortable thinking of themselves as caregivers, also don’t see that caregiving can easily be like a job, more work and responsibility than was ever possible before the advent of modern medicine. They just don’t see the connection between the difficulties of caregiving and the fact that our healthcare system was never set up to help patients with chronic conditions, which of course is what our loved ones have. That’s why Medicare is in such sad shape these days. It is paying doctors to put people in the hospital but not to spend time talking with them, answering their questions, giving them advise and counsel. As advocates for our loved ones, as advocates for us as their family caregivers, we must come together and speak with a common voice that says we want, and need our healthcare system to be more responsive to people with chronic conditions. After all the majority of healthcare expenditures are spent on people with chronic conditions. Let’s make that money work for us by providing the type of care and services we need.

This is our issue good quality, affordable healthcare that is consumer focused and consumer friendly. Healthcare that is flexible so that it meets the needs of individuals, and healthcare that respects families and considers family caregivers as real members of the healthcare team. If we don’t stand up and demand it, why should we think it will ever come to be?

(originally posted 11-20-2008)

There is a difference between aging and getting old. The first is something that you’ll do , just as a matter of course, with each and every breath you take until you make your next phasal transition. Getting “old” is totally a mindset; it’s avoidable and should be consciously avoided at all costs, like anthrax or a plague. We must learn to age with grace and respect. We must learn to respect the wisdom (where it exists) that comes with the experience of aging. At the risk of sounding too cliche’ we’ve all heard that we should strive to live each day as if it were our last. We need to, as a society, as the sentient human being that we are, eliminate this ‘should word and replace it with the word MUST. If we approached each day and the moments in each day with this mindset, the aging factor would become a non-factor; a non-issue.

We must, absolutely stop striving (at least in our American society) to have ‘retirement” as a goal. That goal, this false goal of rewarding ourselves after a ‘job well done’ “age” with kicking back and doing nothing is a procrastinators way of putting off an inevitable suicide…not an initial death of the physical but definitely a mental and then an emotional one. The physical death (generally speaking) , unfortunately, follows not long after.

I see it all too often during some of my volunteer activities with seniors. I am met sometimes with vapid stares where autonomic, physiologic activity continues to take place but not much else…behind those eyes…I know, can feel even sometimes a wanting, a yearning to do, be engaged in something, anything…but just existing. A scream every now and then would be better in some cases than the deafening and crushing silence I am met with from those who are with us, continuing to age in such a less than honorable and humane manner

So, I am assisting my mother (76) and have been for the past 13 years to fight the good fight to be as vibrant of a participant in her life as the ‘dementia diagnosis’ continues to fight it’s fight as well. In providing reinforcement for my father’s fight (86 – long distance),where ‘the mind is willing the body is unable’, helping fight his good fight is a little bit easier.

This is where I get the mantra of ‘Don’t Retire; ReTool and ReNew’. This is what I know. This is what I do.

Right now, my mother and I are sitting in our screened in back porch at home eating pancakes, strawberries and grits. We’ve been talking about the different birds chirping and hopping from tree to tree and watching the squirrels run back and forth across the grass.

13 years ago this week, I almost lost her to one of those “incompatible with life” diagnoses by the ‘Almighty Whitecoats’ ( of which I am one) in our traditional health care system. She had a massive brain hemorrhage and was given 96 hours to live…

I did loose my mother, the personality that was Louise up until that time, but have been blessed to get to know my mother, Louise, the personality that emerged and has evolved over these thirteen years.

As her primary caregiver, I take care of this “new” Louise and encourage her to do whatever she can for as much as she can endure each and every day. The daughter in me misses the “old” Louise, my mother, running buddy and friend, but the new and albeit, improved model [smile] does just fine too! It’s been rough [an understatement] but , fortunately, the bad times have been punctuated with long periods of very good times which continues to spur us both on and forward, each and everyday.

This afternoon, we’re going over to Stone Mountain to check out the annual Pumpkin Festival over there. We’ll probably come back pretty messy, but that all a part of it. Yesterday we went to the Great Georgia Air Show. She complained a little bit about the F-18 after burners noise, but after giving her a Coke and a smile, all the complaints subsided.

13 years and counting…

…my lucky number 13….

I cherish each and every moment, day… and ‘number’ I have with her!

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The Samurai Caregiver

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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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