The Samurai Caregiver

One of my very dear friends sent this to me today. It expresses so very well an experience of someone who has just been there for another in their time of need…caregiver or not, relative, friend or not. It expresses our humaness and a level of humanity that we need to get back to, sooner rather than later. A level of respect for another human being in their hour of need out of nothing other than genuine and sincere concern for just somebody else other than yourself.

I could not be by my father’s bedside when he passed last June. It grieves me much, which is part of the reason for my absence in posting here. Read this knowing that if you are that person at the bedside for someone else, it makes such a huge difference to them and their families/loved ones…
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A nurse took the tired, anxious serviceman to the bedside.

“Your son is here,” she said to the old man.

She had to repeat the words several times before the patient’s eyes opened.

Heavily sedated because of the pain of his heart attack, he dimly saw the young uniformed Marine standing outside the oxygen tent. He reached out his hand. The Marine wrapped his toughened fingers around the old man’s limp ones, squeezing a message of love and encouragement.

The nurse brought a chair so that the Marine could sit beside the bed.All through the night the young Marine sat there in the poorly lighted ward, holding the old man’s hand and offering him words of love and strength. Occasionally, the nurse suggested that the Marine move away and rest awhile.

He refused. Whenever the nurse came into the ward, the Marine was oblivious of her and of the night noises of the hospital – the clanking of the oxygen tank, the laughter of the night staff members exchanging greetings, the cries and moans of the other patients.

Now and then she heard him say a few gentle words. The dying man said nothing, only held tightly to his son all through the night.

Along towards dawn, the old man died.. The Marine released the now lifeless hand he had been holding and went to tell the nurse. While she did what she had to do, he waited.

Finally, she returned. She started to offer words of sympathy, but the Marine interrupted her.

“Who was that man?” he asked.

The nurse was startled, “He was your father,” she answered.

“No, he wasn’t,” the Marine replied. “I never saw him before in my life.”

“Then why didn’t you say something when I took you to him?”

“I knew right away there had been a mistake, but I also knew he needed his son, and his
Son just wasn’t here.

When I realized that he was too sick to tell whether or not I was his son, knowing how much he needed me, I stayed.”

I came here tonight to find a Mr. William Grey. His Son was killed in Iraq today, and I was sent to inform him. What was this gentleman’s name?

The Nurse with tears in her eyes answered,

Mr. William Grey………….

The next time someone needs you … Just be there. Stay.

One of my friends ( Dr. Daphne) sent this to me today and I felt it would be an appropriate share for The Samurai Caregiver site. Being happy usually is not synonymous with being a caregiver. Its so very important for us to remember that it is a choice; choosing to be happy.

If you’ve read “The Traveler’s Gift” y Andy Andrews, you’ll immediately recognize this as being one of “The Seven Decisions” he so eloquently discusses in this wonderfully told and expressed story.

Enjoy!

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92-year-old, petite, well-poised and proud man, who is fully dressed each morning by eight o’clock, with his hair fashionably combed and shaved perfectly, even though he is legally blind, moved to a nursing home today.

His wife of 70 years recently passed away, making the move necessary. After many hours of waiting patiently in the lobby of the nursing home, he smiledsweetly when told his room was ready.

As he maneuvered his walker to the elevator, I provided a visual description of his tiny room, including the eyelet sheets that had been hung on his window.

I love it,’ he stated with the enthusiasm of an eight-year-old having just been presented with a new puppy.

Mr. Jones, you haven’t seen the room; just wait.’

‘That doesn’t have anything to do with it,’ he replied.

Happiness is something you decide on ahead of time.

Whether I like my room or not doesn’t depend on how the furniture is arranged .. it’s how I arrange my mind. I already decided to love it.

‘It’s a decision I make every morning when I wake up. I have a choice;

I can spend the day in bed recounting the difficulty I have with theparts of my body that no longer work, or get out of bed and be thankful for the ones that do..

Each day is a gift, and as long as my eyes open, I’ll focus on the new day and all the happy memories I’ve stored away.. Just for this time in my life..

Old age is like a bank account. You withdraw from what you’ve put in.

So, my advice to you would be to deposit a lot of happiness in the bankaccount of memories!

Thank you for your part in filling my Memory Bank.

I am still depositing.

‘Remember the five simple rules to be happy:

1.. Free your heart from hatred.

2. Free your mind from worries.

3. Live simply.

4. Give more.

5. Expect less.

Have a nice day, unless you already have other plans.

One of my friends sent this to me today and I wanted to pass it on. I don’t know the original author  but feel the same way as described towards the end about friends – and caregivers worldwide.

An elderly Chinese woman had two large pots, each hung on the ends of a pole which she carried across her neck.    

One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water.

At the end of the long walks from the stream to the house, the cracked pot arrived only half full.

For a full two years this went on daily, with the woman bringing home only one and a half pots of water.

Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection, and miserable that it could only do half of what it had been made to do.   

 After two years of what it perceived to be bitter failure, it spoke to the woman one day by the stream.

‘I am ashamed of myself, because this crack in my side causes water to leak out all the way  back to your house.’

The old woman smiled, ‘Did you notice that there are flowers on your side of the path, but not on the other pot’s side?  That’s because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them. For two years I have been able to pick these beautiful flowers to decorate the table.  Without you being just the way you are, there would not be this beauty to grace the house.’

Each of us has our own unique flaw. But it’s the cracks and flaws we each have that make our lives together so very interesting and rewarding. You’ve just got to take each person for what they are and look for the good in them.

SO, to all of my cracked pot friends and Caregivers worldwide, have a great day and remember to smell the flowers on your side of the  path!

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…

(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!)

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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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