I’m not a doctor. Nope, I’m not a social worker or psychiatrist either. But I am a breast cancer survivor, endured 8 major surgeries and lived through a massive blood clot, so know first hand what it is like to be a patient needing care. I’m also an experienced caregiver and though it is a role that I never asks for, I’ve come up with a phrase to describe a higher state: “the empowered caregiver.” Interestingly, as I look back and look ahead, each situation to be an empowered caregiver provides opportunities to engage differently. Depending on the situation and relationship to the person needing help, roles change.
Having been part of our family team when my sister-in-law Nancy was diagnosed and lived with lung cancer for 20 months, I played the role of organizer (see #6 below) and practiced #7 – Lean on each other. Today I’m part of a team of family caregivers with my step mom who has ALS and play the roles of Listener (#1), Research ahead (#3) Lean on each other (#7) and Be present and be yourself (#10). A new tragedy is upon us as my father-in-law (who lives with us) recently fractured his neck and damaged his spine during a bad fall. My evolving role seems to be Listener (#1), Create and participate in channels of communication (#2), Research ahead (#3), Lean on each other (#7), Take Care of You (#8), Watch out for hovering (#9), and Be present and be yourself (#10). Realizing my different roles in each situation is in itself empowering; it can also be a warming flare if you are trying to implement all 10 at once.
Yes, I have experience, and I’m compelled to share it with you – to increase both understanding of the need and to encourage you to start practicing “empowered caregiving,” engaging in helping someone who needs your help when the situation presents itself. Challenge yourself to do more to serve others and include empowered caregiving as an ingredient in your personal recipe for servant leadership.
Most of the time people don’t or won’t ask for help. Nobody issued humans a rulebook on guiding us through things that make us uncomfortable. Sometimes you just have to do. In the process, you will find a new type of community of giving and enlarge your capability to love your neighbor.
Being a proactive or “empowered caregiver” is different than being the classic caregiver. Let’s start with understanding the word, “caregiver.” One definition of a caregiver is a paid helper. There are agencies popping up every day that provide various levels of service for families – from simple companionship, to light housekeeping on up to nursing services and hospice. I know because I’ve researched them. It is important to do your homework and to determine what level of paid care you might need if your situation needs someone to come in to your home setting to help with care. But this article is not about paid caregivers. It is about inviting yourself into someone’s life to make a real difference in his or her recovery. It is about stepping over your personal threshold of discomfort to experiencing the joy of giving without any expectation of returned favors. My challenge to you is to move beyond caregiving to empowered caregiving. So how do you get there? Read on and see what areas resonate with you then go out and DO.
Since everyone seems to like Top 10 lists, here are my top 10 Ways to Become An Empowered Caregiver:
1. Listen –
Simply “being there” to hear information and see how you can help is being proactive. You are going to hear things you don’t want to hear, but you can’t play a role as a proactive caregiver if you stay home and hope things get better and that other people are helping. Also, listening to family members dealing with crisis, as they need someone to talk to is an important role, so make sure to touch base. Even a simple text asking “How are you doing?” may be the conversation starter they need and a way for you to gauge how much help they need.
2. Create and participate in channels of communication – Communicating to family and friends via technology is both a time-saver and an empowerment tool. During a crisis, phones ring off the hook, taking family away from their loved ones and talking on the phone is exhausting as well. People care and want to know what is going on and how they can help. Think about setting up a Care Pages or Caringbridge site or even a Facebook group (private and locked). This allows the family or a proactive caregiver to send out reports and let those who are far away (and near) express their concern and contribute positive words of encouragement.
Currently I administer a private and locked Facebook group that is updated daily on my father-in-law’s condition and progress. I invited family and close friends who are on Facebook to join and am now adding email addresses of those not on Facebook so they have a link to the group and can participate. Since Leo is not able to use his hands to operate his computer right now, I read him the “likes” and comments each day and he looks forward to getting this daily feedback. This tool is also therapy and sanity for me, an empowered caregiver to keep the communication channel open and keep our phone calls to a minimum so we can focus on Leo’s recovery.
3. Research ahead –
This step may be hardest for family members. Looking down the road may not be the pretty picture we had hoped it would be. Someone needs to ask the hard questions, work with a social worker or medical team to understand what to be prepared for in the near future. Staying one (or two) step/s ahead means when that transition time comes, you can initiate your plan.
So, what do I mean? For someone with ALS, it means doing research on paid caregivers before they need them, on types of wheelchairs while they are in a walker and it means replacing carpeting with flooring before an accident happens. For someone with a spinal injury, it means exploring care choices once the patient leaves the hospital and then what home needs to look like. For someone with cancer it may mean exploring your local hospice services or finding where you can borrow a wheelchair or oxygen tank if needed temporarily or what resources are available for wigs while the patient still has hair.
Doing the research and having all the options on the table early plants the seeds to your loved one about what the next step is to help them mentally prepare for the change ahead. Every step “backwards” for the patient may mean giving up a sense of personal independence. Be mindful this is extremely difficult and plant seeds via conversation, printed background information and suggested websites so they can learn what’s coming. Information is so powerful and scary at the same time! There is a careful dance of doing the research, having it ready and moving into a next phase of any “new normal.”
4. Practice random acts of kindness –
Send a card, mow a lawn, drop off a favorite food or bag of easy to prepare groceries, put a vase of flowers by their front door…you get the idea. Don’t ask permission, just think about what types of things make you feel good when someone does them for you and then go do them. It is amazing the impact on the patient, family and the feeling you experience personally. Also remember that a family need support not just in the first days or weeks of a crisis, but months down the road. Support falls off after the first month or two and “support fatigue” kicks in, so pace yourself to be the one who can be there for the long haul.
5. Anticipate and “Just Do” –
If you have personally experienced health challenges, you might have more insights into what needs there are in the family going through a rough time. The house and family don’t run themselves during medical tragedies. The basics of keeping a house clean, yard work and feeding all available for adoption from proactive caregivers. Can you mow your lawn and then pop over and mow the lawn of someone who is in the hospital? What about making an extra meatloaf dinner when you make yours and drop by just before dinner with it (or call ahead and tell them you are bringing dinner to them). People won’t tell you they need you to make dinner for them, but if you proactively just “do,” the appreciation will be there. A reminder if you are making food for someone, remember to ask about any food allergies and make things in disposable containers so there is no need to return dishes.
6. Help organize –
Life is full of things that need to be organized. What types of things that your friend or loved one may need help with on a temporary or permanent basis? Ask them and then offer specific things, not just general help. Whether it is rides for kids to school or extracurricular activities, preparing meals, or simply reading to the patient or sitting quietly as a companion. Many times the person closest to the patient is so consumed in being with them and their daily needs, other areas get neglected. Don’t be afraid to ask the primary caregiver “Can I help organize or provide x?” Again, be specific with your request. Saying, “Let me know if you need anything” is the standard empty phrase for someone who wants to appear helpful, but is not practicing proactive caregiving. Replace with a concrete offer of “Will Wednesday at 5 be OK for me to drop off dinner?” or “Do you need help organizing yard work or house work? Yes, organization tends to fall apart unless someone proactively takes on this role. If this is something you like to do and sincerely want to do it, offer it up and a big burden will be lifted.
A committed caregiving team needs to learn how to draw strength from each other. Not everyone needs to be at the hospital or by someone’s bedside at the same time, but everyone should feel they have a role. Take turns and remind each other it is OK to resume some of your favorite activities and not feel guilty about it (easier said than done). Taking a break from being a primary caregiver to let other family members visit is perfectly fine and encouraged so you can be more rested and attentive.
8. Take Care of You – phrase credited to my friend, Maureen, who has been someone that reminds me of this during each personal life challenge.
Personal tragedy is a shock to our systems – both psychologically and physically. There may also be a lot of denial at play that this is actually happening to the family. Depending on how close you are to the patient and how much you are willing to take on, learn how to pace yourself. Long hospital visits, fast food because you have no time to cook, skipped health club workouts can add up to the closest family members not taking care of themselves. As a proactive caregiver, remind the family to take care of themselves to better take care of the their loved one. Offer to give the primary caregivers a break, take them out for a meal and just listen to them as a sounding board. Also, find a friend who can be your safe place to fall apart; Someone whose hug makes it seem better; Someone whose shoulder you can cry on and whose ears are open to hear what you are going through. Support groups for caregivers are also highly recommended as an avenue to share your grief and to pick up good information from people who are going through similar circumstances.
9. Watch Out for Hovering –
Sometimes patients need space. When family and friends stand over them and keep asking questions about how they are feeling and what can I do for you, it all gets exhausting. There is a careful balance of being present and exhausting the patient with your helpfulness. Engaging in conversation can be very exhausting for the patient. Remember that when you don’t feel well, sometimes just sitting quietly with someone giving them an arm massage or holding their hand is the best medicine. When in doubt, assess where the patient is at the beginning of your visit. You can ask, “Do you want me to tell you about my day, read to you, watch TV with you or just sit quietly?” Giving them a choice based on what they feel empowers them and also guides your ability to be most helpful.
10. Be present and be yourself – when tragedy hits, your friends and family need you present, not checking out. It may be more comfortable for YOU to avoid the hospital visits or asking how to help. However, turn your focus to THEM to get over your apprehension. Nobody is asking you to be super human, a doctor or be someone you are not. But to be a proactive and empowered caregiver, you need to move outside your normal routine and step it up to be truly present.