Coping With Hope
Dedicated to helping people better cope with Cancer
through education, information, and outreach
Caregiver Tips for Coping with Cancer
(Click Here
For Printer Friendly Version)
Hi, my name is Randy, and I am Lyn’s husband, and more importantly her primary caregiver. As we experienced in 1996 and again in 2004, having someone as an essential caregiver is critical to going through cancer treatments. Now I am certainly no expert, a psychologist, or medical doctor but I have talked with enough caregivers and read enough to have seen first hand some things that all caregivers face. While most times a caregiver is a spouse or family member it can just as easily be a friend, someone you trust to share close personal things. Please remember that each survivor and caregiver is different and what might work well for someone else just may not work at all for you. The key is to experiment and try to find the things that work well in your situation. Regardless of your role here are some common themes many caregivers have experienced that will help you Cope with Cancer. If you would like to share caregiver tips with our viewing audience, please email us by clicking on the following link Coping With Hope.
1. During the course of Lyn’s treatments, we have been blessed to
have had wonderful friends, relatives, and a church family to support and love us. However, our biggest resource in the fight against this disease has been our faith. We have always known that we can be in control of our outlook because God is in control of our outcome. Yet, we have seen others at hospitals and treatment facilities that do not appear to have been so lucky. I can’t imagine going this alone. However, if you feel like this is the case where you are at today, just remember that no one is alone as long as they have Christ centered in their life. He will never leave you and will always be your number one comforter. If you and/or the person you care for are not faith filled, seriously consider becoming so today. There is information elsewhere on this web site that will explain just how you can do that. Once you do that, seriously consider becoming involved with a local church near where you live. Many religious institutions have a variety of programs to assist in times of need and the support from those in the church is often overwhelming. You will be blessed and will not be sorry you made this decision.
2. Realize cancer affects an entire family and look for signs in you
and your children to determine if you are effectively coping with the disease. Remember, if you are the primary caregiver, you can do little to help if you become dysfunctional. It is so easy to become consumed with being a caregiver. It is also easy to do so much study that you experience information overload. Before you know it, you find yourself in no shape to help anyone. For me, I first realized it when my sleep patterns became disrupted where I was waking up every morning around 3am. I also saw that I was less tolerant to things that previously I handled with ease. It was much easier to become irritated quicker. It was at that time I backed off from being so intense in my research and in my attempts to be a primary caregiver.
3 Study the enemy. Know as much about the disease, treatments, and latest happenings so that you can become a good patient advocate for the person you are caring for. As you will find, if you haven’t already, patients often find it difficult to concentrate on everything the doctor says during a visit and on various treatment options. Perhaps the person you provide care for is one of the exceptions and if so, that is great. However, be sensitive to the emotional roller coaster side of this disease and be there as a resource of information and emotional support. Never, try to be a substitute for the patient’s own judgment, rather be there as an adjunct to it.
4. Go to visits with the person you are caring for and take copious notes. All too often, patients are somewhat shell shocked by news and the atmosphere of physician’s offices. By your recording everything the physician says accurately, you can later discuss with the affected person in an atmosphere where they can relax and take it all in. I know several times that when I discussed things later with Lyn, who is a very sharp woman, she would find that she had missed some things the doctor spoke about. This is a fairly common thing from patient to patient. Remember, the doctor has very precious time to give you a lot of information. The patient often is dealing with treatment, mortality, and a whole range of emotions so it is little wonder they are sometimes preoccupied. Be there to be their steady backup, in case it is needed.
5. Keep a journal. As a primary caregiver you are sometimes faced with frustration and feelings that you may not be able to share with your mate and by getting these feelings out it helps you to deal with them more effectively. Note: that this is not a substitute for counseling or attendance at a support group for caregivers.
6. Stay upbeat and optimistic. It is important for the patient to see normalcy in you and to let them know there is reason for optimism. At the same time don’t be afraid to share true emotions when the time seems most appropriate. Lyn and I have laughed together, as well as cried together. We have had some very serious discussions on life and where it will take us from here. We have not tried to put a politically correct spin on this disease and yet we have refused to allow it to consume us either. Sure, we have rotten days, but who doesn’t. What we do concentrate on though is our attitude and on getting through each of those days with dignity and honor to God.
7. Talk to the person you are taking care of about phone calls and visits. Determine in advance, those individuals the person wants to talk to or visit with and determine ground rules. For example, one night after one of Lyn’s surgeries, I personally fielded non-stop phone calls from 6pm until 10:30pm as she slept. I was absolutely worn out. Remember, that this can have a significant impact on not only the patient, but you as well. Don’t be afraid to allow others close to you to help share some of this burden.
8. Talk openly about fears and concerns rather than repressing those feelings.
9. Don’t be consumed with cancer. Seek ways in which you can provide some sense of normalcy in your own life. Try at all costs to prevent the person you care for from retreating from contact with others.
10. Once again this is one of those areas where you should set some ground rules in advance. Some patients do not like others to advocate on their behalf. In Lyn’s case, she advocated for herself first and then we had agreed that I could interject on her behalf after she was finished. In that role, don’t be afraid of being forceful and ask the tough questions on the patient’s behalf. I can’t stress enough how important it is to set up these ground rules ahead of time.
11. Know there are many difficult moments and you may find yourself the victim of an emotional outburst directed your way. Try not to take this personally as the patient is dealing with a great deal of emotional trauma as well as physical changes from drugs, therapies, and stress.
12. Use technology as your friend. After consultation with Lyn we set up an email tree of our closest friends who wanted to know her progress. After each significant step, I could do one email and route it to over 40 people around the United States. This kept these people connected to their friend and didn’t wear either of us out.
13. Be prepared to do a lot of listening without opening your mouth. Sometimes patients just need to express themselves without feeling like there has to be a two way conversation. Resist, at all costs, the feeling you must engage during these times.
14. One area where I got my feelings hurt was in the area of making suggestions. As a devoted husband, I felt I had good ideas and suggestions, many of which Lyn used. However, there were times when she didn’t and at first I took this as a type of rejection. Cancer patients have a great need to still feel in charge of their own destiny and they must retain a sense of independence. Respect and value this.
15. We have been through a number of surgeries and have now learned to ask physicians for prescriptions in advance. In that manner, you can have the prescription filled before you bring the patient home so that they can start treatment right away. I can’t tell you how many times we had to drop off prescriptions on the way home from the hospital and then try to find a way to get them without leaving the patient. Think proactively and ahead of time.
16. Cancer patients have a unique perspective that only another cancer patient can understand. When we first started going to charity functions supporting cancer I was a little taken back that my wife could talk to some other survivors in a way and in a language that even we didn’t share. At first I was jealous and envious. However, in talking with other caregivers and survivors I have found this is normal and should not be interpreted in any other way. Learn to celebrate and support the survivor being able to openly talk about their experience with other survivors.
