The Samurai Caregiver

Posts Tagged ‘caregiving

The “Dammit” Moment.

This is just a short little post about leaving the hospital…

We (Mom and I) haven’t had to be an inpatient so far this year (knock on wood) but I’ve always wanted to share this little nugget.

When you have a hospital stay, depending on why you or the care receiver is there, you’ll usually wind up getting a lot of supplies in your room. Lots of times, when it comes time to be discharged, you’re anxious, ready to go…and just want to get the heck out of there. Even though the hospital will sometimes provide you with a big plastic bag to put your personal items in, usually it’s not big enough  to get everything in it that you brought in with you or have accumulated during your stay.  Since it’s a trait of most Caregivers to not want to trouble others, we’ll usually not ask for extra bags…and we’ll feel  that the extra supplies that are left in the room could be given to the next patient; someone less fortunate.

Get over it!

Ask, Ask . ASK!  Ask for the bags, as many as you can carry and take al that you can that’s allowed in your room with you!!!!

Why???

One of our biggest hurdles as Caregivers is not asking for what we want, asking for a little help. I think it’s in the soul contract or the DNA of Caregivers or somewhere in a hidden, unwritten but very real code book for Caregivers to not open up their mouths and ask for stuff sometimes. This issue ( the hospital stay and disposable items left behind in the room in particular) has really become a ‘nit’ for me. Ask for them. You or whoever is going to pay the bill have already PAID for them. In most cases, they cannot or won’t be returned to the hospital’s inventory. The employees are generally not allowed to take them home  – hospital policy, blah, blah,  blah – and they’re usually not allowed to take them (on an individual basis) to give the to someone less fortunate.

Such a pity, such a waste….

Plus, every time, everytime, every single  time, later, when we have returned to the sanctity and security of our homes, not once, not twice, but EVERY TIME we, Caregivers , have that “Dammit” moment.

What’s that you say?

It’s when you get home and you haven’t been able to go to the store yet because you came straight home from the hospital, trying to get yourself and/or the care receiver into the house,  the bed, trying to get back on track with the ADL schedule, the med schedule , the sleep schedule …. And then there’s that “ thing” that was back in the hospital room, that the nurses and the aides told you to take with you , but you politely told them ‘no’ – and now – You NEED it.

You need the gauze, the chucks, the pads, the big water cup, the ointment ,the bandages, the steri – strips, the incontinence care products, the wipes, the tubes, the inhalers, the  scissors, the this ,that and the other…you need them now – RIGHT NOW and you had them all , at the ready while you were in the hospital, but, now…

 “Dammit” ….  

…you’re cursing yourself and at yourself, because you can see them, all of these things, very clearly, back in the room you just left!!!

Alright, soooooo next time, don’t be shy, don’t be proud – scoop up and take the items you want. Count your blessings or gifts and walk / roll ‘proudly’ out of the hospital. Be happy that you’re getting out of there but don’t be stupid about it, ok?  If you need some way to justify all of this to yourself so that you won’t feel bad when you cross the threshold of the hospital exit, back out to the outside world, keep the little scenario I just described above in mind as well as this little saying:

“Better to have something and not need it, than to need something and not have it!”

Advertisements

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…
*****************************************************************************************
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.

(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 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?

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!


Enter your email address to follow this blog and receive notifications of new posts by email.

Join 26 other followers

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.

%d bloggers like this: