Published: LifeLines for Health, vol. 6 (Winter 2015)

By Janet Brewer, M.Ed

As I write this now in November, National Caregivers Month, I have some time to reflect on the multiple years I have spent (and still do) as a caregiver. Within our community, we are bombarded with information on factor products, maintaining a healthy lifestyle, healthcare and insurance changes; the list goes on and on. But where are the articles and information on how to manage your emotional and physical health when you are the primary caregiver of a child with a bleeding disorder and an inhibitor? It makes “just having hemophilia”, look like a cakewalk. This isn’t to depreciate their daily struggles, but what all of us would give to be back in the “just hemophilia” crowd. As we all know, inhibitors are a totally different diagnosis.

IDENTIFYING AN EPIDEMIC

“Caregiver stress is defined as the emotional strain of caregiving”1. The impact of caregiving effects us economically, physically, and emotionally. Not to mention the effects it has on our jobs and our relationships. The statistics are as overwhelming as we are overwhelmed.

The National Center on Caregiving indicates that an estimated 59%-75% of caregivers are female. Females spend 50% more of their time providing care than men. Working women caregivers are likely to suffer a higher level of economic hardship due to caregiving. Most caregivers are employed. Among baby boomer caregivers (aged 50-64 years old), an estimated 60% are working full- or part-time. With these statistics it is no wonder these women are stressed out. They are often juggling their own work schedule demands; their child’s caregiving demands and many are taking care of their elderly parents as well. This often involves using personal days, sick days or vacation time to schedule appointments or when their loved one is in need of treatments or if they are ill (if they are fortunate enough to have a job that provides paid time off). Working women caregivers may suffer a particularly high level of economic hardships due to their caregiving.

The impact on the physical and mental health of the caregiver takes its toll.1 A number of studies have found that female caregivers are more likely than males to suffer from anxiety, depression, and other symptoms associated with emotional stress due to caregiving. As many as 20%-50% of caregivers report depressive disorders or symptoms. Caregivers use more prescription and psychotropic drugs than non-caregivers.1

While researchers have long known that caregiving can have deleterious mental health effects for caregivers, research shows that caregiving can have serious physical health consequences as well. Studies have shown that caregivers may have increased blood pressure and insulin levels, may have impaired immune systems and may be at increased risk for cardiovascular disease among other adverse outcomes.

HITTING CLOSE TO HOME

Reflecting on these statistics leaves me not only staggered, but all too aware that care-giving is now a big part of my identity. Do these statistics sound all too familiar to you? Has caregiving now become your identity? When we have children, our identity is forever linked with our child’s, “Oh, you’re Robert and Edward’s mom.” Our endless “To Do” List looks like anyone else’s, until you add a chronic illness. We are in serious caregiver stress territory. So a show of hands please (be honest now):

Do you put off your own health and emotional needs to care for a loved one? Studies show that by doing this we often end up feeling angry, isolated, and anxious.

• Do you have problems sleeping or want to sleep all the time?

• How are your eating habits-have you lost or gained too much weight?

• Are you tired or feel like you have no energy?

• Have you lost interest in activities that you used to enjoy?1

• Do you feel the need to control all aspects of yours and your loved ones lives?

• Do you even remember the activities that you used to enjoy?

• Do you turn down offers for help, even from your family members or your partner, further isolating yourself and establishing your identity as “THE CAREGIVER”?

Many of us are well acquainted with these truths. Honest answers to these questions may help you to recognize the impact caring for your loved one is taking on you. Identifying, acknowledging, and embracing the role you play, as the family caregiver is the first step to creating a more balanced life.

Now the hard part... how do we learn to create a space where caregiving doesn’t become your reality?

Accept that your family member has a chronic disorder. Their diagnosis will affect you too and it is understandable to feel upset, angry, disappointed and maybe even helpless at times. Know that you must allow yourself to go through a grieving process as your hopes and dreams for your child or loved one is now very different than what you anticipated. It is perfectly appropriate to express these feelings and recognize that this may put a dent in your future activities, or plans. While you absorb the feelings of those around you, don’t forget to acknowledge that as a caregiver you have emotions as well and you may not be able to fix other’s feelings. And sometimes, it might be better to let them figure out some of them with someone else rather than you.

DO YOUR HOMEWORK

As the primary caregiver, you will learn unfamiliar and out of the ordinary things; like gauze soaked in black tea can help with oozing teeth. High school biology had nothing on what we need to learn! Ensure that you are aware and well- versed on your loved one’s diagnosis, severity, recommended product, as well as all product choices available to you, treatment protocols, physician/HTC information, and medical alert identification. Educate yourself, read everything provided to you and seek out more information. Search the web, find and attend support groups, educate members of your extended family so they may be a source of support for you.

Insufficient knowledge breeds fear! What we don’t understand is scary. Arming yourself with as much information as you can helps to mitigate some of the fear and allows you to take back control. Know that you are not alone; your feelings are NORMAL and try not to be afraid. Fear paralyzes us. There is hope that you can and will balance your life. Recognize that you ALSO are affected with all the same mentally, physically, socially and spiritually. The active role that you will now play in their life is truly a gift that requires openness of the mind and willingness of the heart. It is important to note that caring for another person can also create positive emotional change.

Aside from feeling stress, many caregivers say their role has had many positive effects on their lives. For example, caregivers report that caregiving has given them a sense of purpose. They say that their role makes them feel useful, capable and that they are making a difference in the life of a loved one.2

COMMUNICATE, COMMUNICATE, COMMUNICATE

Communication is the single most important way to learn anything. Communication will make a situation with no possible resolution seem easier to figure out. As the caregiver, part of your role is to communicate with your affected loved one in a positive manner. They need to know they have an outlet, but be aware of how many roles you may play in your loved ones’ life. Trying to fill too many roles are detrimental to both of you. Initially, it will be your role to explain to the doctor and other health professionals what symptoms they might be experiencing, as well as sharing your observations and thoughts. Remember to allow your loved one to express their own symptoms and care as often as possible. The medical staff is only as good as you help them to be in treating your specific disorder. If you have questions, ask. If you have a difference of opinion or information that you have learned from outside resources, respectfully share this with the physician. As the caregiver, you become the expert as you live your daily life with your loved one’s disorder. Teaching and modeling these skills for your child will allow them to become successful adults who will be better equipped to manage their own care.

The second part of communicating is to ask for what you need from your spouse, significant other, trusted friend, or family member. Try to remember that those around you care about you and in most circumstances, genuinely want to help. They won’t know what you need unless you tell them. When we are in the middle of a crisis, we don’t even know what we need. Our mind is flooded in crisis mode, making it difficult to communicate. When the dust settles, reflect on the crisis and write a list of tasks that others can do for you... Meals? Picking up other children? Someone to sit beside your child or loved one at the hospital so you can take a shower? Write these needs down or put them in a chart so that when someone asks during the next crisis (and there will be another one), you can easily hand it to them.

When we are stressed or overwhelmed, it is so easy to develop a mind set that it is easier to do it yourself rather than going through the steps of explaining what is needed. By adopting that mind-set, two negative things occur: you shut out the very people who are trying to help you which makes them feel inadequate and less willing to provide assistance in the future, and you become more angry and resentful. By opening lines of communication and letting others help you, you allow them to feel good about themselves and deepen the relationship between yourself, the other person, your loved one and your family. As Barbra Streisand once sang, “People who need people are the luckiest people in the world.”

TAKING CARE

Taking care refers to not only the loved one with the bleeding disorder, but treatment of the individual who
is caring for them. If you don’t take care of yourself, who else is going to do it? The equally important question is, if you become unable to perform the “duties” of caregiver, who is going to take care of your loved ones? The best gift that you can provide your loved one is an emotionally, spiritually and physically healthy you. “The research is very clear; the affect of stress on
the family caregiver has been shown
to affect our immune system making us more prone to chronic illness ourselves.”3

Depression and anxiety can affect our ability to not only make informed decisions, but it affects concentration, stamina and the ability to function on a daily basis. Left undiagnosed and untreated it may impact our overall desire to live. Putting yourself first is not selfish; it is self-less. The relationship and bond you have created with your loved one is one of complete trust. They trust you to always be there when they need you; taking time to do something relaxing for yourself affords you the opportunity to return more energized and relaxed. It also serves as a way for them to see you as a person beyond themselves. This in turn affects their perception of themselves.

FINDING RELIEF

So how do you work on your treatment? First and foremost –

Be flexible. Bleeds and injuries happen and they usually happen at
the worst possible moment. Holidays, planned activities, and family gatherings are the most popular times! Modeling flexibility creates resiliency in a family. If someone is laid up with a bleed and the family can’t go to grandma’s to celebrate that big birthday, why not switch the party to your house? Remember, it’s about spending time together, where you spend it isn’t important.

What lesson will they take from the party coming to your house? That family and loved ones care enough to make sacrifices for the greater good.

Keep your priorities straight. 

Is it more important that your home looks like something out of a home and garden magazine when everyone comes to celebrate grandma’s birthday at your house in our above example? No, life happens on a daily basis, which includes a house that may not meet everyone’s standards. We need to remember as caregivers not to allow our own guilt to bleed into what we think others are thinking of us. I once saw a sign that read, “If you came to see me- great! If you came to see my house, make an appointment.”

Organize your day. 

Sometimes in the most stressful of times, we look at the whole of a day and get so overwhelmed it can be paralyzing. Break your day down, if you can only get through ten minutes at a time, so be it, concentrate on getting through those ten minutes. Then, take a deep breath, pat yourself on the back and get through the next ten minutes or maybe the confidence you gained from managing those ten minutes will inspire you to tackle twenty minutes!

Banish the phrases of “What if ” or “I could/should” from your vocabulary. Dealing with what IS can be more than enough to deal with. The here and now is the reality, not what MIGHT happen or what COULD have happened or what SHOULD have happened. My children used to ask me “What If ” questions all the time when they were younger and my response was, “I can only deal with what is”. We often spend our days trying to protect our child from that next bleed, when the reality is-they bleed. Spontaneous bleeding is the reality for individuals with hemophilia and an inhibitor, so if they are going to bleed doing nothing, why not at least try to let them enjoy life a little (within acceptable limits of course!) Stressing over what we can’t control only creates more stress.

Exercise - even if it is only doing some type of physical activity for ten minutes, three times per day. There
are 24 hours in a day; we spend about 16-17 hours of them awake. How is it not possible to find at least 10 minutes for yourself in there somewhere? Hide in the bathroom. Walk through your neighborhood with your child in a stroller, wagon, or wheelchair. It will be good for both of you. Can’t get outside? Power walk through or around your house, run up and down the stairs, jump rope in your kitchen, tackle the chores you can that day with a little more zest. Do a body scan. Are your shoulders up around your ears? Teeth clenched? Muscles tight? Take those ten minutes to sit upright in a chair by yourself and mindfully will those muscles from the top to the bottom to unclench. And if that doesn’t work there is always chocolate!

There are two types of rice, and I’m not talking about the brown and white varieties.

• Loved ones need RICE when a bleed occurs.

  - Rest, Ice, Compression and Elevation

Successful caregivers need RICE too. - Rest, Inspiration, Compassion and Energy

So while they’re resting on the couch, you rest too. Pop in a movie, rock out to your favorite music, read a book, take a nap, practice yoga, mindfulness or simple breathing exercises to help you refocus and relax. (Refer to LFH Winter Volume 4: Exploring the Science of Mindfulness). Start a journal, writing down your thoughts and feelings give you the opportunity to release and let go of them. Practice gratefulness. Each day find three (3) things you were grateful for in the day. Studies show that after just one month of doing this, you will become a bit less stressed and a happier person. “I’ve been able to show that fear closes down our minds and our hearts, whereas positive emotions literally open our minds and hearts... they really change our mind- sets and our biochemistry” Dr. Barbara Fredrickson Professor of Psychology, University of North Carolina3 http://www. actionforhappiness.org

Speaking of biochemistry, don’t be afraid to seek out professional help for yourself or your loved one, or both. Whether you make an appointment with your spiritual advisor or a trained counselor, there will be times when the stress of your daily lives can and will overwhelm you. There is no shame in seeking an outside, unbiased professional to let all of those feelings out.

Anger, frustration, resentment and despair are all naturally occurring emotions as your family attempts to cope on a daily basis with the challenges of chronic illness. Sometimes it is better to discuss those feelings outside of the home where words cannot be misinterpreted. Be sure that you and your loved one are seeing different professionals or allow separate time for each person to speak privately. Sometimes, we may need more than a counselor. Remember our statistics show that 20%-50% of caregivers report depressive disorders or symptoms? Stress changes the neurotransmitters in our brains, so it would make complete sense that you or your loved one may need to speak to your doctor(s) about using a medication to treat those symptoms. Some may need it long term, some for short term. A word of caution; never go off of these prescribed medications without your doctor’s knowledge.

Find a friend. As a member of the inhibitor community you are part of one big family. Inhibitor Summits provided by NHF, Inhibitor Family Camp, Leverage and Momentum provided by Comprehensive Health Education Services provide opportunities to share, relate and have fun. Find a person or family that you connect with. Face Time, Skype, become friends on Facebook, Twitter or whatever social networking method works for you. We are living in a society that is sometimes overwhelmingly connected. Reach out. The whole process of sharing and caring is a two way street. Allow the support you receive from the community to empower you to remember that you control the bleeding disorder, it doesn’t control you!

There are numerous challenges to providing our loved one optimal care but we can be successful when we prioritize. Keeping ourselves healthy and organized puts us in a better position to care for our love ones. Therefore, by eliminating room for stress we make space for the success and rewards of being the caregiver so that it doesn’t become our identity.

ABOVE ALL ELSE, maintain a sense of humor; you won’t get through this without one! Many of us have developed some really quirky (but necessary senses of humor!) As a family that deals with chronic illness on a daily basis, you may need to dig deep sometimes to find something to laugh about. Is it possible to look back at the annual Christmas picture when your child had a black eye and shake your head and laugh?! It will just become part of your family’s norm and it makes a great story to tell! Bruises, needle sticks, infections, bleeds and hospitalizations are part of our “normal”. By taking a deep breath and finding that “silver lining in the cloud”, over time, you’ll and your loved one’s ability to cope and become resilient.

1 Source: U.S. Department of Health and Human Services, Informal Caregiving: Compassion in Action. Washington, DC: 1998, and National Family Caregivers

Association, Random Sample Survey of Family Caregivers, Summer 2000, Unpublished

2 Source: Medicinenet.com, Caregiving. http://www.medicinenet. com/caregiving/article.htm

3 Source: Action for Happiness: Take Action, Find Three Good Things Each Day. http://www.actionforhappiness.org