Taking care of the ones you love
Often times, people who step into a caregiving role for one reason or another, are inexperienced in this critical role. There are a lot of unanswered questions: How do you talk to someone who has just been diagnosed? How do you support them in the best possible way? And one of the toughest questions: how do you take care of yourself through all of it? It is natural to want to help your family and friends, especially when one of them has been diagnosed with a serious disease like cancer, these are people that you love and cherish. In order to help them most effectively it is important to go into a caregiving role with specific goals and expectations in mind.
What to say to a recently diagnosed loved one?
So what do you say to a loved one that has been recently diagnosed with cancer or another life threatening disease? The answer is, surprisingly, not much. To avoid being overbearing it is important that you make sure your loved one knows that you are there for them but only as much as they need or want. Educate yourself about the diagnoses and the type of cancer/disease that they have so that you can understand what they are going through. Avoid using that knowledge to offer unwanted advice by insisting they try this or that, just because you read about it online. Oftentimes the best thing you can do is simply spend time with them and share their feelings by offering a shoulder to cry on. Avoid being judgmental or being overly optimistic by saying things like, “you’ll be fine,” or “you’ll get better, don’t worry about it.” These sorts of things can make them feel like you don’t actually understand the gravity of the situation or understand their feelings; instead, simply assure them that you are there for them.
Here are some “do says” and “don’t says” from cancer.net to get you started:
Some options to help show your care and support:
- I’m sorry this has happened to you.
- If you ever feel like talking, I’m here to listen.
- What are you thinking of doing, and how can I help?
- I care about you.
- I’m thinking about you.
Some examples of phrases that are unhelpful:
- I know just how you feel.
- I know just what you should do.
- I’m sure you’ll be fine.
- Don’t worry.
- How long do you have?
Care-giving can be a long, difficult road, so it is important that you are prepared and know the best, most practical ways to help and support your loved ones. First, as mentioned above, it is critical that you research their cancer diagnoses, treatment courses, side-effects, and anything else that you may be concerned about. This will help you be a more effective support source. Once you have a better understanding of the situation you can help your loved one seek out the best treatment, with the direction of their doctor of course. Rely on the experts but use your education to ask good questions to manage expectations on treatments and to know when a second opinion on things may be appropriate.
Aside from helping with the logistics of care, you can also make a huge difference by offering help in other areas of their lives. To make things easier, instead of simply telling them that you are there if they need anything, take the burden off of them and offer to do specific things they may need. These can be things like offering to walk their dog, do the dishes, go to the grocery store or pharmacy for them; be specific and timely and you will be a huge help to them without being overwhelming.
Make sure that you are truly present for them. Offering company and a way to take their mind off of their condition is also critical. While nothing you can say or do will cure them or make their treatments any easier, having someone that is there to talk things through and to gain emotional and spiritual support from can make all the difference. It is also important to try and take the attention off their condition from time to time, while supporting their wellbeing. Think about exercising with them to the extent that they are able, make time to watch a movie or play a game together, or do whatever other activities they are able to enjoy without over-exerting themselves. And most importantly try and make them laugh. Being light, silly, and breaking the serious tone can work wonders by creating fond memories together and maintaining a positive outlook day to day. Another important goal to all of this is to make things as normal for them as possible. Do not treat them as though they are fragile creatures. They are the same person that they have always been to you; make sure to remind them of that.
Being a caregiver or go-to person for someone with a chronic illness, especially for a loved one, can be extremely draining, both physically and emotionally. It will be critical that you take care of yourself as much as you take care of your loved one. The most common areas were caretakers’ wellbeing is affected include; trouble sleeping or finding time to sleep, poor eating habits and lack in meal preparation time resulting in less healthy diet, lack of time to exercise or lack of motivation to be active, being unable to stay in bed when sick, and also the failure to keep up on their own medical needs and doctors appointments. All of these can be detrimental to your personal wellbeing so it is imperative that you take steps to limit your stress and maximize your self-care as much as you are able. Some ways that you can manage this include asking for help. Don’t be afraid to ask others for assistance now and again. Be specific in how they can help you and let them decide what they are willing and able to do for you. Even little things like someone willing to cook a dinner for you or the one you care for once a week can make a big difference.
Sleep is another huge concern. Remember that if you are sleep deprived you not only become a less effective support-giver, but you actually can become a danger to yourself and the ones you care for. Make sure that you are getting adequate sleep. Ways to help with this include setting a maximum amount of time that you can spend with your ill loved one. You may feel the need to be by their side 24/7 but that is just not realistic. Remember that you are human and need to take care of your own needs as well, as much as you would like to be superman. Set sleep goals and take a nap or go to sleep early if you are feeling tired.
Do not feel guilty if you need to re-energize by taking time for yourself. It is not a selfish thing to still engage in your favorite hobbies, social activities, and exercise routines. Setting goals is a good way to accomplish this. List them out if you have to but make sure that you are still striving for things in your own life. Set certain exercise goals, or goals for a certain number of hours of sleep each night. By making time for yourself it will not only give your mind a break, but will make you a more effective and energized source of support when you reconvene with your sick loved one.
Don’t forget that while you may be thinking about your loved ones’ care and doctors visits, do not let yourself forgo your own care. Annual exams with your physician, dentist visits, prescription regimens, and any other care you normally undergo is still just as important as it was before your loved one was diagnosed. Aside from just being important to maintaining your own health, seeing your doctor also affords you an opportunity to seek their professional opinion on how to limit stress, improve your diet, and otherwise limit the impact of the caretaker issues that you may be dealing with.
Finally, remember that you are not the only one that is going through this dire situation. There are many other people that may be in the exact same situation as you. Don’t be afraid to seek out social groups either locally or online. Be open-minded to going to a support group to connect with others that can lend an ear or even a helping hand. It also helps to talk with people who have experience dealing with the same issues as they can understand what you are going through better than most others and could even be the source of some meaningful new friendships.
Through this whole process it is important to accept the fact that some people get better and some are not able to recover. Your loved one may be on the road to recovery and will one day be all better; but, in some cases death is inevitable and it’s important to be prepared to say goodbye. Grief, when dealing with a long term illness, is a lot different than that of a sudden death, primarily because there is period of time where there is an expectation of death. In their book “Saying Goodbye,” Dr. Barbara Okun and Dr. Joseph Nowinski detail the grieving process from diagnosis to death in 5 phases:
Phase 1: Crisis
This stage begins with the diagnosis of the serious or terminal disease. A crisis is created in the lives of those involved. Anxiety and fear are the most prevalent emotions during this phase. The best thing to do in this phase is to remove as much of the unknown as possible by researching the disease itself, treatment options, and what to expect throughout the rest of the process.
Phase 2: Unity
This stage is when the person who was diagnosed and their friends and family accept the situation and begin to come together and define their role going forth. It is important to define what the needs/capabilities of each person is and be open and honest with all involved.
Phase 3: Upheaval
Upheaval occurs as the life changes brought on by the situation begin to create issues and difficulties with in the social circle of family and friends. Frustrations, guilt, and resentment can surface creating animosity between friends and family members. During this stage it is important to maintain open communication and try your best to let go of negative feelings as they arise.
Phase 4: Resolution
This stage occurs once the ill person has reached a point where recovery is no longer an option and death becomes a reality. Family members and friends begin to accept the reality of the situation. This is where the real grief starts and various people will have a stronger reaction than others. It is important to let everyone grieve in their own way and not pass judgment. This phase is important in that it may be the last chance to resolve issues between yourself and the dying, recall good memories of the times you spent together, and to say any last words you have before they pass. Seize the opportunity when you can.
Phase 5: Renewal
The final stage begins after the person has passed on, usually at their funeral. This can be an extremely confusing time as everyone grapples with the reality of what happened and their own mixed emotions. But this is the time where you can begin to try and focus on the good times you spent with them, and decide how you will remember them and honor their life in a positive light.
Source: Saying Goodbye by Barbara Okun, Ph.D. and Joseph Nowinski, Ph.D. by arrangement with Berkley Publishing Group, a member of Penguin Group (USA), Inc, Copyright © 2011 by Harvard University.
These descriptions are just a brief overview. For a full description of the phases please visit http://www.helpguide.org/harvard/saying-goodbye.htm
Whew, okay heavy subject I know, but it is one that we could all face at some point in our lives. If you or someone you know is dealing with this in their lives and needs help, please seek out support groups online or at a local cancer center, or consider seeking professional counseling. If you have an employee assistance program through your employer, it can be a great resource that can provide guidance, help finding information, and referrals to counseling.
To Your Wellbeing,
American Cancer Society
Family Caregiver Alliance
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