My father lost his battle to metestasized inoperable Mesothelioma lung cancer almost 10 years ago. Where the growth was lodged right smack in the middle of what connected his lungs. It was a very brave battle of 18 months, but nonetheless a very tragic, stressful time for all concerned. Many cancer patients and their families can help ease the trauma of family or friends who suffer from this traumatic life threatening disease.
Some doctors have the worst bed side manners. When the cancer is diagnosed, the patient goes through so many emotions, but having a family member to help in dealing with doctors, nurses and technichians will be a big relief.
As the main care provider for my father, I read everything I could get my hands on. I researched each type of drug they put him on asking questions along the way. I was bothersome, but it was necessary intervention.
During the time when my father was diagnosed, shortly after that his friend was also diagnosed with cancer. The treatment he had and the outcome of how they dealt with the cancer were very different from my Dad's.
Family support is crucial! Yes, people cry, who doesn't! However, crying in front of the patient does not help him fight. A positive attitude helps, cry if you must but never in front of the patient. The patient already knows what's in store for them. They need the family to be their rock. While everyone around my Dad were displaying their emotions, I became his rock. This helped him to rely on me to take care of all that was needed for him. I fended off any bad emotions or things that would make him lose hope.
Yes, the doctors told him he had just enough time to get his paperwork in order. After 2 months, one of his diagnosing specialist actually had the nerve to state that he should not be alive to him. Some doctors have the worst bedside manners. Tactfully he was taken aside and berated of course.
Although you will come across people that will mistreat a cancer patient who should know better, it is not in anyone's best interest to make them upset, even if they deserve to be told off. They can still make his already uncomfortable existence more discomforting.
It is an arduous task to be the main care taker of a cancer patient, but if no one stands up to take this position, the patient doesn't get the much needed support.
Take for instance his friend who also got diagnosed. His family was overwhelmed with emotions and relied heavily on his doctors and nurses for his needs. He refused treatment after his nurse told him what would happen if he consented to be treated. His family found out why he decided not to have the treatment, but thought it was a good decision. The just assumed because the person was a nurse, she knew better. The word cancer to them meant there wasn't anything else they could do. Maybe this is fact, but this decision put him through more pain and sufferring. He died 3 months later in a very painful state.
A cancer patient deals with a lot of emotions. Their mortality is no longer a question. A once vital and self reliant person needs to accept help as well as accept his fate. Resentment is a hard emotion to handle. This is released to anyone that comes near. Understanding is the key to getting past these emotional turmoils.
Dealing with other family emotions. It is hard to tell your Mom, or brothers or any close family relations to keep their emotions to themselves. It is important to let them express their emotions but make sure they understand that crying in front of the patient doesn't help his resolve.
In the beginning my Mom came with us to all of my Dad's appointments until I noticed how he clammed up when she got in the car and how animated he was when we were in a room waiting for the doctor. So, I explained to my Mom that she should stay home and tend to her garden or whatever instead of wasting her time in a waiting room. That helped. However, her emotions too were very high and of course his bouts of anger which he unmercilessly spewed on her caused some very deep wounds. As the care provider I also made sure to take care of the other family emotions. Recalling some of them I knew that a lot of the tears that were being shed were tears of regret and of words that should've been spoken but not spoken even when the time to speak had come. I still deal with this from time to time with my Mom and older brothers.
You know what they say about "Regrets", sometimes left untendered it can eat at your soul! But, that's neither here nor there.
Feeding a cancer patient in the early stages is also a very exhausting affair. They lose their sense of taste and sense of smell, especially right after a chemo treatment. But, feed them you must. Find out what it is they want to eat and that is what you will serve, because that is what they will only eat. Yes, it's like dealing with a little child, but that too can be understood under the circumstances.
Keep them away from sharp objects. As the disease progresses, any type of puncture regardless how small can cause infections and complicate their already downhill spiraling health. This includes razors for shaving. Infection can set in causing fever and sometimes the need to bring the patient to the hospital. Avoid this as much as possible. If you need to shave them, do so and try to avoid any nicks or let the beard grow until such time his immune system is at a good level again.
My Dad decided to shave his entire head bald, he justified this action because he knew it would fall out eventually. He nicked himself in several places. I administered tylenol, called his doctor as he shivered from a high temperatured fever of 104. Fortunately, the fever went down and an ambulance was not needed. A little nick causes high fever that can cause infection. Fortunately this was avoided and he learned his lesson.
Phelm build up in the lungs. You can make tea from fresh basil leaves. This helps them cough out the build up. Only provide this tea if they are still strong enough to handle the coughing spasms. I only write this as my father's cancer was in the lungs and this is what I gave him to help relieve the build up.
Preventing Bed Sores. Bed sores are common for any patient that eventually is confined to bed rest. Providing pillows to raise the head and a pillow to elevate the legs will help provide comfort. Massaging the legs and arms, helps to circulate blood flow.
In my father's case, Coughing Bouts was a normal thing especially as the cancer progressed. Raising him up in a sitting position with gentle massaging on his back helped ease the coughing spells. Making sure to help him turn over several times helped keep the bed sores at bay.
Medication. It is important that medicine be given as provided and not as wanted. Pain medication is administered and elevated as needed. Delirium can set in during these times. They will be paranoid and sometimes dellusional. This will pass.
Morphine is a very potent drug that required me to provide identification to pick it up. The drug actually helped my bed ridden Dad to walk, as the drug took effect, he didn't feel any pain and he could walk. With help of course, but he always woke up wondering how he got there. This drug should be kept away from the patient. My Dad use to forget that he took it and demanded my Mom to give it to him. This of course when he was experience excruciating pain. However, the potency of this drug can kill if not taken properly. I kept a diary of medication schedule for him to make sure that he was provided the correct dosage at the correct time. This drug, must be disposed of as soon as it is no longer needed. I flushed about 90 pills in the toilet to the dismay of my older brother.
It is very important to research all drugs that are provided. Drug interaction can cause bad effects. Only one doctor should prescribe the drugs for the cancer patient.
In Hospital Chemo Therapy. As the care taker, it is important to make sure during chemo sessions the patient is well taken care of. The tube used to administer the chemo should always be checked for kinks. My father's first chemo nurse explained everything I needed to check to make sure his treatment was as comfortable as possible. A kink causes bleeding and it disrupts the flow of the chemo. The chemo nurse's job is to make sure this does not happen. Unfortunately there are some really good chemo nurses and some that aren't. We experienced both, so I made sure I was there for every chemo treatment.
Butterfly Needles. Since any size of puncture wounds can cause infections and the need to have their blood tested is required. A Butterfly Needle which makes the tiniest hole is what you should request. I requested that his doctor put this in his record. The blood technicians will argue that it doesn't matter. Rationally and logically it does. The instructions written by the doctor ensures that the technician uses the Butterfly needle when blood is needed for testing. If the technician cannot be bothered to read his records, you can choose to have another technician draw the necessary blood work.
To ensure that your demands are taken seriously, you must also inform the doctor to add your name to his records as the person to contact before any type of treatment is given. As there will be times when the patient is too drugged up to understand what the doctor is making him sign consent to. My Dad was in the hospital because of a complication. He was only to be held overnight for observation. During the evening, they wanted to draw some blood. He was in a drug stupor, not understanding where they wanted to draw the blood from, he signed the papers. They drew the blood from the top of his feet, where the veins were by then so very tiny. It caused tremendous excruciating pain as they poked and poked and poked trying to draw blood, to the point where the nurses told me he was actually screaming. This pain and emotional stress weakened him to the point where he now needed to stay in the hospital for a few more days because his vitals signs were very weak.
The attending doctor was not his specialist. None the less I made a very big deal about it. From that point on they learned to consult me with every little thing as I threatened a malpractice suit if another incident happened again. Apologies are not acceptable as they could've drawn the blood elsewhere. Their convenience caused him a great deal of pain and suffering. Ensure that you are named as consultant to all treatment whatever it maybe. At some point they will not be able to understand what it is they are consenting to. As a care provider you will need to make these decisions.
When solid food hurts to swallow. Eventually there comes that point when solid food will hurt them when they swallow. Providing a balanced meal is still required.
This takes a lot more work, but you can still provide the nutrition they need by changing a few ingredients you put in your cooking. For example, Beef Stew which has a lot of red meat, provides protein, potato for starch, celery for fiber, etc . . cook it the same way except it has to have more liquid, and a little more veggies but less potatoes. Pulverize the cooked meat, potato, carrots, celery in a food processor. Add some of the soup to help liquify it. After it has been liquified, put it in a large bowl or cup. Add more soup. Insert a straw. The patient will now drink his food. You are still providing the nutrients he needs, but in a very unconventional way. My Dad survived on this type of feeding for about 6 - 7 months.
I supplemented his diet with Ensure for times when he really didn't have any appetite at all. Sometimes, I created ice cream shakes with his Ensure just to give him a little variety. One scoop of Vanilla ice cream with one can of Strawberry flavored Ensure, can be a tasty treat.
When the doctors can't do anything else. I made an agreement with my Dad what to do when the time come and the doctors wouldn't be able to do anything. This was done very early on, a very uncomfortable question but if said in a way where it is not a death sentence it can be achieved. What I said to him was "There will be a time when the doctors would not be able to help. Would you rather stay in the hospital or come home and spend time with us and sleep in your bed at home?" He of course chose the latter. When that time finally came, it was still hard, I could tell the pain was weakening his resolve and he didn't understand why I was taking him home instead of having him prep for another operation. Somewhere deep in his mind, he knew what was going to happen even if it was left unspoken.
It is important to discuss what to do if the doctor's can no longer help. As the main caretaker, you will be left with this decision and all decisions in regards to his care. Some of the decisions you make may not be viewed favorably by other family members. The main thing is that the person who is dealing with the cancer, "the patient" agrees to what you have decided. Nothing else matters except for his wishes.
I think taking on the position of main care giver was a blessing. I got to know my Dad and I learned patience and laughter was surely the best medicine for both of us as we found the funniest things in the weirdest situations. When once upon a time, he listened to my babbling, now it was my turn to let him speak.
Allowing him to express himself was I think the biggest help. Understanding what he was going through and allowing him the ability to express it any way he wanted without taking it in was another. Being a Rock is not the easiest position when you see the deterioration of someone you love dearly. However, the sacrifice isn't much when you think about the fact that this person gave you life.
It may be different for some as my situation was daughter taking care of her father. But, if you become a care provider for someone who is facing their mortality, the easiest way to handle it is to put yourself in their shoes. In doing so, you will be able to ride the tide that follows as you will understand why they do the things they do.
Be the buffer and stand up when they can't stand up for themselves. The medical professionals may have the degrees and the knowledge to treat them, but some do not belong in this type of field. Even family members who cannot put themselves in his shoes can be frustrating. The main concern is always and foremost his well being. You can take care of yours when all is said and done.
It has taken a long time for me to even write about that time of my life with my Dad. I decided to write this here in hopes of helping someone else who may or might be going through it. I have briefly written about things that we went through and what I've done to help him along. I've come across and met many who have dealt with cancer and some of the information I've provided were not known to them or they've experienced but didn't know what to do about it. Doctors and Nurses are not Gods, hope can really help extend one's life. Patience and understanding is the best medicine if injected with love and respect in this type of heart wrenching situation.
