According to the Merriam-Webster Dictionary a caregiver is "a person who provides direct care". Having NHL for over a decade now I have seen many types of caregivers who have aided in my battle, and having recently been a caregiver for over 2 years for my Dad, have been to the extreme where a caregiver can get. It was harder to watch Dad go through his turmoil, than to actually go through it myself. And speaking of turmoil the "ULTIMATE CAREGIVER" or our TWIN to our battles has been Mom, surviving 10 long years with me and nearly 3 years having to worry and care for both. How much can a person take before it effects them?  Can you say Compassion Fatique. She's a special, strong, loving lady, who's had the hardest battle of us all !!! I've decided to do a section on caregivers as a means to try to understand what my Mom has gone and is going through and to find information on how I can help her to get over her decade of fatigue. My research led me to an interesting article on Compassion
Fatigue posted at where in an InteliHealth interview one of the nation's leading medical experts talks about compassion fatigue.

In this approach I'll post

Q: What is compassion fatigue?
A: This term has replaced the more familiar term "burn-out." It refers to a physical, emotional and spiritual fatigue or exhaustion that takes over a person and causes a decline in his or her ability to experience joy or to feel and care for others. Compassion fatigue is a one-way street, in which individuals are giving out a great deal of energy and compassion to others over a period of time, yet aren't able to get enough back to reassure themselves that the world is a hopeful place. Its this constant outputting of compassion and caring over time that can lead to these feelings.

Mom sure fits that description because of what she's been through in the last decade. Before our Cancer came Mom had a hard time with Menopause, which led into the hardship of a parent watching her son fight for his life through 3 remissions. Then when I recovered Dad and I tag teamed and he went into the ring and unfortunately was counted out. When I was a caregiver for Dad watching him suffer, I wanted so much to trade places, to somehow ease him of some of his pain. During one the visits to see Dad in the hospital I was overcome by an emotion, one that I will never forget. I felt as if we had changed roles. All my life he has been my guidance, my strength. Those eyes were looking for answers. Answers that I could not give. It was almost as if he was asking me to tell him how I had overcome my cancer and what he should do next. At that point I wish I had a magic wand I could have waved to make him better or knowledge of a medical procedure to use to buy time but with his histology, there weren't any options. Experiencing this helped me to associate with the roller coaster ride of emotions Mom has gone through and continues to go through worrying about me and the environment NHL brings.

Q: What causes it?
A: Compassion fatigue comes from a variety of sources. Although it often affects those working in care giving professions — nurses, physicians, mental health workers and clergymen — it can affect people in any kind of situation or setting where they're doing a great deal of care giving and expending emotional and physical energy day in and day out.

Health Care professionals have the luxury (but they have to learn how to do it) of leaving the office behind when they go home but what happens when the care giving is done mostly from the home. My parents have always been home bodies and would rather entertain than be entertained and when Dad got sick the caring environment became a 24 hours zone with little room for retreat to regroup and recharge, and Mom wasn't about to change her lifestyle overnight and still finds it hard to do so today.

Q: Who is most at risk of developing compassion fatigue?
A: Although those in the health care and mental health professions are most at risk of developing these feelings, it is not limited to these arenas. It affects those who don't work outside the home as severely as those who do. Take someone who is actively engaged in taking care of a family member, especially during a crisis period when there is a higher need to give out feelings of compassion and sensitivity. If the crisis doesn't pass quickly and the individual continues functioning at this level, they are just as susceptible to compassion fatigue over time as those in high risk professions.

Also the level of care needed for the loved one will increase anxiety levels. I had trouble giving myself Neupogen shots so I can only imagine how it feels when your caring for a loved one and you don't want to do anything wrong that could harm the patient. Did I change the dressing properly and why is the Morphine Drip regulator beeping again especially at three in the morning ? What do I do? The medical team fills you in on everything but things happen so fast that you doubt yourself. I did giving myself shots.

Q: What are some telltale signs of compassion fatigue?
A: First, you should understand that it's a process. It's not a matter of one day, you're living your life with a great deal of energy and enjoyment, and the next, you wake up exhausted and devoid of any energy — both physical and emotional. Compassion fatigue develops over time — taking weeks, sometimes years to surface. Basically, it's a low level, chronic clouding of caring and concern for others in your life — whether you work in or outside the home. Over time, your ability to feel and care for others becomes eroded through overuse of your skills of compassion. You also might experience an emotional blunting — whereby you react to situations differently than one would normally expect.

Mom taught me how to be a giver but I don't see that in her as much these days. She's still there in the important areas but it's in the little things that I can see the difference and it certainly didn't happen overnight. This isn't an easy topic to talk about because I love her dearly but she's lost her joy for life when she lost Dad and now she's searching for her new role, totally out of esteem. In her search she has become defensive and sometimes testy and I understand why and I will continue to help her through this. Recently I brought a social outing to her (experienced the wrath) and was rewarded by seeing her smile throughout the day and every time she talked about it from then on . She wasn't given a chance to say no on this one but it was done in her environment and something she needed but wouldn't do on her own.

Q: If you have this condition, what can you do?
A: The most critical need is to acknowledge that you may be experiencing it. All of us have multiple demands and energy drains in our lives — some positive, some negative — which all require a great deal of emotional and physical attention. There are, however, many hands-on things you can do to mitigate the feelings of compassion fatigue. For one, start refocusing on yourself. Before you can tend to and be sensitive to the needs of others, you have to take care of your own well-being. This can be as simple as getting plenty of rest, becoming more aware of your dietary and recreational habits, and cutting out negative addictions in your life like nicotine, alcohol and caffeine. Remember, the healing process takes time, as does the development of the problem.

I'm going to help Mom get over this by communicating my health status with her at the level she needs and be more patient to her inquiries and concerns to help ease her insecurities. I always said that one thing that I would do differently is to make sure more family and friends were kept up to date on my status,.. right from the start, to ward off hearsay. My parents called from Mattawa one day and were coming to get me ( in Toronto ) because they had heard that I had lost forty pounds and was sick all the time from the chemo pills I was taking. It was then that I assured them that I was telling them everything, and my word was the word. Today I still find myself defending my word. Living with Cancer does that, everyone things you're hiding something from them. That's the dark side of Cancer, the uncertainty of ignorance, and it's ominous presence in the faces of well wishers.  And now that I'm more aware of compassion fatigue I would over emphasis this point to people that need to hear everything.

Q: Is there anyway to prevent compassion fatigue?
A: Preventing compassion fatigue is really the key. It's much easier to stop it from occurring in the first place than it is to repair things once it sets in. You have to continually practice good emotional health maintenance along the way and maintain some sort of balance in your life. There has to be a portion of your life in which you need to take, rather than give. Beyond practicing fundamental self care skills, you need to put yourself in situations in which you see the positives in life, for example, attending a field trip with your child where you're truly enjoying the experience, or volunteering where you're able to give and receive. Sometimes, you can't prevent compassion fatigue from occurring. We see this a lot with individuals working in professions with a high degree of human interaction and human service. However, practicing some of these techniques can restore your ability to feel compassion for and sensitivity to the troubles and difficulties of others.

I wish I would have had this insight a decade ago. No matter how strong you are all caregivers eventually need help and despite your strong will, you can't do it all by yourself and if you try it will have serious side effects. The confusion of initial diagnosis creates a makeshift mold for the ladder of responsibility, based on a hope of fast recovery but if this doesn't happen then the burnout will occur because you will be in over your head for too long a time. Learn to delegate right from the start and ease other caregivers into the picture. Most loved one are reluctant and scared of the role but if you hold their hand and show them the way to understanding, most will get by those first monumental hurdles of insecurities. Pay attention to who does what well with the patient and take advantage of the comfortableness to help ease your role. Discover the network of caregivers around you: identify, delegate and draw strength from their words and actions.

DIRECT CAREGIVER

You are the patients life line. The burden of providing care -- from dressing, to eating, and even to giving needles is all yours and it will be physically and emotionally draining. You're there through thick and thin, from initial diagnosis, to the history that lies forth whatever it will be, but a direct caregiver just the same. Along with the hardships you reap the rewards that remission brings, the joys of understanding what living is all about, when you get the chance to do just that, the utter enjoyment of taking a simple breath.  In a way you become their TWIN in so many emotional ways. But all good things must come to an end and you do the hardest thing that you will ever do in your life, watch a love one succumb.

DIRECT CAREGIVER (SUB)

You are a benefit to both patient and direct caregiver. You have no problem with doing things with the patient, that you both feel comfortable doing together. You allow the main Direct Caregiver the time to get away to regroup and recharge.  Your's is a double dose of love.

GOOD FRIEND CAREGIVER

You are my lifeline outside my immediate family. You're there for me when I need to call on someone I can count on, to come through when I need you most. Your the kind of person who would say things like "if anyone can beat this thing you can" and you give me strength through your words and actions. Your not intimidated by the big C and have tried to understand what I was going through all along, fighting your insecurities along the way and believe me I salute you for that.

ACQUAINTANCE CAREGIVER

When we meet you want to shake my hand and find out how I am and are genuinely concerned. We may not know each other that well but our paths have crossed and I appreciate your kind words. You might give me an example of when you thought of the way I handled my hardships to deal with yours.

RELUCTANT CAREGIVER

You use others to achieve the same results. You don't communicate with me directly but I hear of what you said or did. Unfortunately most people fall in this category because of the ominest presence cancer casts and the fear of its uncertainty and darkness.

LONG DISTANCE CAREGIVER

You have a wall in between you and the patient in distance, but you communicate however you can.

INSPIRATIONAL CAREGIVER

You range from celebrities facing the same battle (Saku Koivu and Andres Galarraga famous pro players, shining after beating NHL), to someone I heard has lived with NHL for over 20 years now. Even though I don't know you I'm overwhelmed by the example you set. You give me strength to fight on like all caregiver do.

When I decided to put Dads Story on the Internet I had no idea at the time that it would provide strength to help get me through the ordeal of being a caregiver.  Communicating with the world brought him strength through words that he would never have experienced and allowed me the outlet to regroup and recharge through others going through, or having been through the same thing. My outlet was talk and exercise and not having to be in a 24 hour care giving environment.

Mom hasn't been as fortunate. Being a 24 hour caregiver takes it toll especially after the history with me. If I could go back and start this all over for Moms sake I would been more open to her inquiries of trying to understand initially and throughout my battles. But I was confused and angry and never reassured her enough and I'm not sure if I could have, but I could have tried harder. However, back then I didn't have the wisdom and experience that I have today, so I can't be too hard on myself. I never was one to dwell on the past too long so I'm going to concentrate on being there for Mom from now on.

Caregivers have to be aware that they need to take care of themselves. Getting well needs a positive, healthy, environment, so that the patient can harness your strength towards their will to press on. You need outlets to get away from it all, as hard as that can be sometimes. You can't do it all, especially if the job gets lengthy so MAKE the time to regroup and recharge and it will be the best thing you can do for the patient.

TAKE CARE

IT'S A TOUGH JOB BUT SOMEBODY HAS TO DO IT
DIRECT CAREGIVER OBSERVATIONS

Having been through cancer it was easier for me to treat Dad as I always had. That's so important for family members because the patient will get enough anxiety from others who don't know how to react to the situation.

Dad likes to tease his boys and be teased so even to the end I would try to use humour to help ease his pain even when laughing brought on more. I could always tell when he was trying hard to communicate because he would focus with his good eye. My joking about it eventually helped us communicate when it got rough.

Loved one's are often the victims of a patients wrath, try to understand.

Dad came back from the Hospital having hospitalitist and I could see he had been taking it out on Mom.  A quick reality check (Hey I've been there, you're home) brought him back down to earth.

A rebellious, streaking, IV pulled out Dad, lashing out at his sons for not being able to go home from the hospital at 5:30 in the morning ( so you want a be a nurse).

Even if you're prepared it will get emotional.

Dad walked through the doors and looked at me and his eyes were crooked from concentrating too hard. It immediately through me for a loop despite being warned. It was here that I realized that we were losing him.

Pride forces you to be strong to push on with the hope that it will go away but it only seems to get stronger and it takes over your life, engulfing you in it's suffocating state.

Pain a caregivers worse nightmare being a TWIN. Here's what worked for me in dealing with the pain.

1. I forced myself to stay awake as long as I could so that I was so exhausted I could squeeze in a couple of hours rather than a couple of minutes.
2. I used the minimum amount of painkillers during the day so I had a stockpile for the long night.
3. With me the pain shifted so I tried new position that seemed to work for awhile and kept adapting to something that worked (quite difficult when the pain was extreme when I was laying down).
4. I kept everything I needed near by so that on good nights I'd wake up and take more pills and luckily fall back asleep.
5. If I couldn't sleep then I wouldn't fight it and I spent many a night surfing or watching the tube.

I had pain for about a year with the last few months at extreme levels (no sleep). My belief is to use as few pain killers as possible to cut down on their side effects and I was lucky enough to have local radiation relieve the pain and a Peripheral Stem Cell transplant bring on remission so I never had to use heavy pain killers but I was very close to asking. My Dad provided the same example for me in his battles but I was so glad when he asked for something to ease the pain. He went from morphine pills to a morphine drip and for awhile their was control between the pain killers and his sanity but with the increase in the morphine came "His Super Dreaming". It instantly cut like a knife when he told me during this time " the nurses think I'm faking". The patient's pain tolerance will determine there level of assistance but be aware of the side effects and how to deal with them. Eventually it was the amount of Morphine needed to fight the pain that gave Dad an out. There was good and bad during this time : Humorous Occasions from statements like "Don't step on the dog on your way out" and Trying Times from statements like "I just want it over".  Pain it scares me for I have felt its wrath.

Fight the uncertainties and communicate.

My last visit with him on the Saturday before he died is one that I will never forget.When I entered the room and he saw me he went into a blind rage and he kept saying " I just want it over, I just want it over, I just want it over". The more he struggled and the more he said it,  it broke down my wall and I found myself not knowing what to do and a feeling of helplessness and sadness rose from the pit of my stomach up my body into my upper torso, resulting in an overwhelming tingling sensation in my head and face. I had to sit down and try to compose myself while nurses calmed Dad down after what seemed like an eternity.

During my stay with him his strength amazed me even under these conditions and I had a hard time keeping him from struggling and I had a new found appreciation for the nurses responsible in administrating his care. I've never been so scared in all my life, not even when I was in danger. During this last visit I was determined to get a response from Dad. Despite the struggles I held his hand and let him know I was there. Several times he would calm down and I could tell he was trying hard to focus through his good eye. Then he would hold out his arms like a small child would and I'd  hug and kiss him and we would have a good cry together, AND I TOLD HIM NOT TO FIGHT IT, something he needed to hear from me.

During one of the quiet periods I held his hand like he used to hold mine when I was young, caressing the top of the hand and administered a series of love taps. I did the procedure several times at the same time asking him if he remembered who did this. A smile came to his face, one that I will always remember and one that I will always cherish because it was something that I wanted to remember him by, not the person I first saw when I entered the room. For him to fight through the pain and find the strength to smile showed how much he loved me and told me that he felt my love, and it happened because I made the effort to try to communicate with him.