by Oliver J. Desofi

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This book is about the author's personal experience as a caregiver, how he became one, everything he learned along the way and what a wonderful life two people can have together regardless of the situation.

The author wants to share what he learned; information from doctors, insurance companies, the pharmaceutical industry, disability claims and a number of other


This book is about the author's personal experience as a caregiver, how he became one, everything he learned along the way and what a wonderful life two people can have together regardless of the situation.

The author wants to share what he learned; information from doctors, insurance companies, the pharmaceutical industry, disability claims and a number of other important issues including positive thinking and a happy life. His real life experiences have been "battle" tested in the totality of caregiving.

The information he shares relates to all caregivers and many situations; from diseases, accidental disability and war wounded veterans. He further describes how one caregiver, over a period of 24 years, was able to maneuver across the "battlefield," still survive and not succumb to battle fatigue.

Someone else's knowledge about something negative can make things more positive for you...and that is an important part of what this book is about.

Many books out there are a wonderful collection of data compiled from the internet and government sources and provide answers to many issues. This book covers the "must do" items which are based on his experiences that can be used as a reference guide and adapted to your individualized situation. Every patient is different and in order to earn the "Caregiver of the year" award, you must find what works best for them.

The most important issue is to realize that a severely disabled person needs to be treated with respect and dignity. Unfortunately, too many handicapped patients are disposed of like a useless piece of furniture or parked out of sight at some poorly run institution. What would you want to happen to you, should you ever be disabled as a result of an accident or disease?

REMEMBER - it can happen to anyone - anytime, including YOU!

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Copyright © 2010 Oliver J. DeSofi
All right reserved.

ISBN: 978-1-4567-0113-0

Chapter One


"Caregiving" is provided to a person, who for whatever reason has become disabled and cannot, as a result of such impairment; perform functions normally done automatically without spending a minute thinking about it.

We all know — and of course don't want to accept — that when we get older there will be physical limitations on our lives. Hopefully, the kinds we can deal with such as ... it hurts to pick up the paper but a neighbor brings it in every morning or you can't always drive but someone will hopefully be around to take you shopping or to doctors appointments and yet, with all of this, you manage to take care of the rose garden. With old age, you prepare in advance as much as possible, hope for the best and truly enjoy the things you can.

Then there are times when you are unfortunately stricken with a disabling disease, a victim of an accident or a disabled veteran ... no one prepares for this ... EVER ... including a potential Caregiver — no preparation!

So, before we go into Caregiving, here's the important question for the patient/ victim (and of course, a potential Caregiver).

Should you be totally disabled and you would be free to select one of the two options listed, which would be your preference?

Choice 1 — Enter a nursing home or assisted living facility


Choice 2 — Stay at home and have a Caregiver support you.

If you selected choice 1, do you have the financial resources or insurance which will give you the ability to select the very best? If the answer is YES, that is wonderful, but you happen to be in the minority. If the answer is NO, do you really want to be cared for by an institution which cannot afford to get the best and higher paid individuals? You may be guided by the fact that if you are unable to pay, that Social Services will come to the rescue and give you some support. But the question was which one would be your preference, not which one would you have to accept, no matter what.

If you picked choice 2, you picked the one preferred by the majority. If you are fortunate to have a dedicated family member volunteer for the job out of sheer love and without any compensation, also hoping that somehow you end up with some disability income, you are extremely fortunate. Your financial resources will dictate the support you may qualify for. Currently the very poor, those that have minimal income and hardly any assets will probably receive the most comprehensive support. Those still referred to as the "Middle Class," are facing the most difficult obstacles. They are not poor enough to qualify for assistance because they are considered to be too RICH. They are really between the rock and the hard place. Their financial resources don't allow them to fund the extensive support required to sustain a severally disabled person for a prolonged period of time. Unless our Health Care environment sees some drastic changes, this group of people will join the poorest in our country at a steep cost to the taxpayer. Then you have the real "Upper Income People" who, because of their financial status, are rarely even interested in becoming caregivers. They are more interested in pawning their disabled family members off to someone ... anyone or an institution. Those individuals are usually to busy playing golf, can't be bothered for whatever reason and are greedy to top it off. They like to negotiate the lowest payment possible for any of the many services available. Some of them like to disconnect their phones so that an institution can't even ask them a question, after all, if they pay whatever has been agreed to and the check shows up like clockwork, they contend that they have done their duty. Some rare exceptions can be found in this group. There are some charities which will give some support, provided you qualify based on whatever rules guide them.

The majority of people questioned about their choice for Caregiving prefer to stay at home and be taken care of in a familiar environment. While it is less costly than a nursing home or an assisted living facility, it requires an understanding of the totality of the Caregiving job.

I can describe the totality because I decided to give up a career when I had reached the top and retired early from my job as a corporate CEO to honor the vow of marriage and become a 24/7 caregiver for my wife. I have stayed by her side for the last 24 years and have assumed ALL the duties of a caregiver. This story is not intended to insinuate or portray the job of caregivers as an ALL or NOTHING type job. The degree of Caregiving that an individual wants or can take on is a very personal matter and depends on the individual's mental readiness, physical capability, passion, commitment and dedication to an extremely complex job. Specific financial capability obviously plays a major role and can make a big difference.

One has to understand that the fictitious advertisement I answered (see Appendix B), specifically "keeping loads of records, long hours, no pay, no benefits, no bonus, no vacation, no coffee breaks, meals on the run and willing to work in any environment" and YES, "sometimes be the recipient of abuse," could be very real.

Let's take a look at the job of a "Caregiver." Ironically there are no universities, colleges or trade schools which prepare people for the most complex and involved jobs, like the "Homemaker" or "Caregiver".

The "Mother/Father" profession receives some training or direction before the baby is born but "pretty much it is on the job training" after birth. While there are guides for parents, no such guide is available for one of the most complex jobs, the Caregiver. These skills can only be learned through "on the job training." Individuals who take this job seriously and fully dedicate themselves in order to excel to perfection will be more skilled than those who graduate from a college and are able to show off a framed diploma for their achievements. Corporations seem to be inclined to rate the diploma holding individual higher than the "on the job trained" individual. How ironic! The vast majority of people would look at the "Caregiver" job not as a highly skilled profession but with a feeling of sorrow for the poor soul. In their view "Caregivers" are probably rated below "Homemakers." It is a fact that the "Homemaker" job is usually portrayed in a demeaning fashion. So let's put the "Caregiver" job on the map. A talented "Caregiver" would make a better CEO for any major corporation than those currently in office and being rewarded with multimillion dollar bonuses.

The multitudes of issues facing a corporate executive are no different than those faced by the CEO of "his/her" Caregiver organization. As a Caregiver you must make life saving decisions. You be the judge — MONEY vs THE LIFE OF A LOVED ONE. Money can be lost and regained, once a life is lost, it cannot be regained. So which job carries a heavier burden and which job should be valued higher?" Certainly not the corporate CEO! For those who will show utter contempt for this statement, allow me to give you the rebuttal. I can make this statement based on my personal knowledge, since I was a corporate CEO before accepting the promotion to Caregiver.

There is no doubt that many non-Caregiver CEO's spend more then 40 hours per week on the job but never 24/7. The caregiver job without exception is 24/7 unless additional people get involved or the patient is admitted to an institution.

For those 24/7 caregivers being able to overcome and coping with the stress created by this type of a schedule is called "multitasking." The ability to meticulously schedule and plan is extremely important to the Caregivers mental health. Ironically, whenever we undertake anything, we certainly don't plan to fail, but how frequently do we fail to plan? Events have to be scheduled in such a way that they contribute to the Caregiving chore, while at the same time giving the Caregiver short bursts of time to do something enjoyable to them.

Those that are 24/7 Caregivers will tend to agree with this analysis. So what are the requirements for a skilled and top-notch Caregiver?

* professional manager who also posses some psychological skills * medical professional in a variety of specialties but only covering a segment of that specialty

* dietician

* skilled nurse in regard to the patients specific requirements

* nurse's aide

* pharmacist

* financial wizard

* insurance and tax specialist

* skilled observer, research analyst and be able to correlate and interpret patient symptoms

* must be able to represent the patient forcefully and cannot be timid

* tremendous patience and compassion

In general, people seem to see a Caregiver as a person who is somewhat like a nurse. This couldn't be further from the truth. Caregiving relates with a patient in a very unique relationship.

Taking care of a spouse (or any loved one) invariably results in a major change in lifestyle. It is one you have to accept as a Caregiver — period — if not — find someone else for the job! A Caregiver has to realize that their own life has changed as well in supporting the person they love ... and it absolutely does not mean bringing down the quality of your own life.

The Caregiver who responds to a sudden change in status, from being a "normal" person to Caregiver of a totally disabled person, has to be a fast learner. If financial resources are available, as a result of insurance or inherent wealth, the Caregiver will acquire those resources in order to perform the totality of the job.

If those financial resources, whatever they may be, are not readily available, the afflicted party will suffer the consequences. The Caregiver will be unprepared and cannot fill the gap in required knowledge by hiring the expertise to bring the lifestyle of the patient into an area of acceptability.

A Caregiving responsibility is one of evolution and is tightly related to the patient being taken care of. How this relationship evolves is the key to being a successful Caregiver, one who will have a patient with a positive outlook, a superior mindset and who will become an active contributor to their own longevity.

The first task, after recognizing or accepting the diagnosis of MS (and other diseases as they relate), is the fact that currently there is no possible reversal to the slow downward progression of the disease. The first casualty is our preconceived notion that we are sick and will get better. The person who moves from healthy to quadriplegic in a very brief moment has no choice but to accept the condition imposed on him or her. The slow and multi-year downward transition creates a mindset which initially, due to its non-acceptance, is setting the stage for more serious problems later as the disease follows its non reversible course.

MS people experience remissions, more so in the earlier years, less in subsequent years and usually none many years later. Remissions are interpreted by many MS afflicted people as "I am either getting better" or "I beat this thing called MS and I am OK" or the whole idea is just plainly swept under the rug. If you view remissions in that vein, you are setting the stage for more unpleasant surprises which have nothing to do with the disease. Many are environmental. Ask yourself: Where do you live, do you live in a house with steps, does your handwriting suffer, are you afraid of stepping on a ladder because you may fall? Not so long ago you had the ability to keep a perfect balance but now you don't want to be viewed as a complainer.

Well, when you are diagnosed with MS or any other non-curable disease, you and your Caregiver, usually someone very close to you such as your parents, your spouse, sisters and brothers or even your children, should start planning together for what will be the inevitable result of your disease.

As early as possible you should plan for your future living quarters. They should be wheelchair accessible, even if you are not in a wheelchair yet. Your living quarters shouldn't have any steps, any sliders should have the rails recessed and flush to the ground, doors should be at least three feet wide, all of them. Bathrooms should accommodate wheelchairs and should be wide enough so that you can easily turn. You should not have a tub, but a roll-in. You should have bars installed so that the patient, at least in the initial stages, still can hold on in order to lift themselves out of the chair. Some counters and kitchen accessories should be lower for easier access. At this mid-range of disability, the Caregiver is supportive when required. Basically he or she is more of an assistant or associate. It is a difficult role because the patient wants to do as much as possible. They want to feel useful while the Caregiver wants to help to make life easier for the patient. This in itself will cause conflicts. Patients will have a tendency to express their feelings by saying, "Hey, let me do this, I am not disabled," forcing the Caregiver to back off without getting annoyed or insulted. When the patient has transitioned to the final stage of almost being quadriplegic, the Caregiver now becomes totally dedicated to just monitor and extend the life of the patient.

To be successful, this phase of the relationship building becomes one of the most important in the life of both. Here the relationship with the spouse (or anyone else) is the key to long term success.

Unfortunately, a very high percentage of MS afflicted people are abandoned by their healthy spouse. There are a number of stated reasons for this, but the true underlying problem allowing this to happen is the lack of building very close and understanding relationships with the afflicted partner. In the earlier years it should be the goal of the couple to do as many things as humanly possible before it will become impossible. What to do depends on your likes and dislikes but probably the best approach would be to view what you as couples have talked about regarding your retirement plans. Think of doing it now or as close to now as possible. It will also strengthen your relationship. My wife and I did and it was the best time of our lives. For some strange reason, the ones that do the "abandoning" would probably be the biggest complainers if the situation were reversed. There are words for it. The words are "selfish or self-centered." I have heard that after the death of the spouse, who was the patient, the Caregiver's advice was, "Don't ever become a Caregiver — it robs you of your precious time." Strange advice! If your time is more precious than your loved one's comfort and well-being then I say, "It is sound advice — I just hope the individual will find comfort on the trip to the final resting place upon entering the elevator at the end of their life, when he or she only finds the DOWN button in working order."

The documented description of our 49 year experience as patient/Caregiver from a perfectly mobile and generally healthy person (the patient) to a quadriplegic state is described as it really happened and is a rare insight for any person afflicted by a progressive and ever debilitating disease. If you ask your neurologist about the potential course of the MS progression or any other non-curable disease, he or she will tell you, it is impossible to predict and there are no specific patterns.

Our joint progression will give you a very good idea. The expert Caregiver role evolved as a result of a love story which brought the patient and Caregiver together in such a way that when the patient had to let go of whatever was no longer possible to do, the Caregiver jumped in and picked up the function.

As a result of the Caregiver evolution one cannot write a book which describes in detail what the responsibilities of a Caregiver are — they change almost daily.

Adaptation to change probably has to be one of the primary attributes and assets of any person who will be a Caregiver for a patient who loses their capabilities over a prolonged period of time.

It is also very important to realize that becoming a disabled person is not by choice and it certainly isn't something that may only happen to someone else. IT CAN HAPPEN TO ANYONE AT ANY TIME, therefore this book could become a description of your own life. No matter which side of the fence you may be positioned, patient or Caregiver, the probability that during your lifetime you will escape from all parts of what is described, is minuscule.


Excerpted from CAREGIVING by OLIVER J. DESOFI Copyright © 2010 by Oliver J. DeSofi. Excerpted by permission of AuthorHouse. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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