Posts Tagged lonely
By Bill Herrin
One of the most unsettling things I see in the TBI community is when survivors feel isolated and lonely. There have been heart-wrenching posts and comments on our blog site about families that shun (or brush off) their own family members that have experienced a traumatic brain injury. Worse yet, I’ve heard people say that they are totally on their own because they just don’t have emotional support from family (or friends). There is no way that I can offer a solution that will work for everybody – for that matter, even for one survivor…but I’m gonna try to give some pointers that can alleviate some of the frustration and hurt that’s caused by loneliness and the things that can make it feel even worse.
It’s hard work
The very first thing I’ve recognized as the rallying cry of survivors is “you don’t know it unless you’ve experienced it” – and that surely is true. Letting people know how your brain injury feels is like describing the color and texture of an abstract painting to a blind person. They have no point of reference to even work with. To many, the conditions, effects, and feelings experienced by a TBI survivor are inexplicable in words…although some are able to do it. I will be referencing a book offered by Lash & Associates Publishing to help find ways to combat the depression and anxiety that survivors experience, to find ways to cope, and to encourage caregivers as well.
In the book titled “Lost & Found” – a brain injury survivor herself, offers these succinct nuggets of wisdom: “Healing and rehabilitating from a brain injury takes a long time. It continues long after formal rehabilitation has ended. It is the hardest work I have ever done. It requires endless courage, determination, motivation, and
support. It usually involves rebuilding multiple areas of not just your life but also your being – all at once. How could there be an easy solution for all of that!
Brain injury doesn’t have to be a destination. It is a journey. Let it be only part of who you are to become. “Don’t accept timetables for recovery.”
— Jill Bolte Taylor, Ph.D., Neuroanatomist
The Key is Incremental Strategy
Strategies are key in making “baby steps” toward better cognition, a better mood, a better outlook, and a better life. Much progress can be made with encouragement from friends or family…but what about those that don’t have that kind of social “safety net”? Be encouraged. Your will to improve is the key to doing the right things and working to get the right results. As always, there will be naysayers that will immediately point out that “you’ve been this way for a long time” or “you’re wasting your time.” Well, with that kind of encouragement, you’ll be better off doing your best – one step forward at a time. Don’t even consider the steps backward…life hands those to everyone anyway!
Incremental strategies are the ticket to incremental change. Biting off more than you can chew is not a good plan! Start off small, find strategies that work for YOU, and repetition is a good thing. If you’re repeating a step, and you know that you are…that’s a great thing! If you recall how your brain used to process information, but you realize that it has changed…good for you! That is a baseline for working on your cognition. Remember, working in tandem with your doctors, therapists, caregivers, etc. is also very important. You’re not going to make measurable progress without someone that can see your “mile markers” and take note of them. Caregivers can also help with that.
Here’s an excerpt from Lost & Found that is a prime example of working toward healing: “Know that in time, as you heal, it won’t always be this hard. You won’t have to plan and strategize each and every little step you take. So remember you are healing, imagine yourself with a cast on your head and be kind to yourself. Treat yourself like you would any loved one with a serious health issue.
Remember to reward yourself for every successful task and effort, no matter how small. Pat yourself on the back and take a break doing something that will make you smile. We have to be our own cheerleaders now, like the supportive people in our lives were when we were growing up.”
Wow…that’s powerful, but also takes grit and determination. Believing in yourself is always easier when you have cheerleaders – but for those who don’t, that excerpt makes a lot of sense.
Emotional healing can come through a combination of things – here are a few (a more detailed version is available in the book, Lost & Found), but here’s a brief overview… Keep a grateful journal or victory log; Discover your “inner poet” by writing phrases that are meaningful to you; Journaling about your day can help you build confidence and see progress; Keep your perspective by noting improvements on a calendar; Challenge and learn from negative thoughts; Take time to smile; Forgive yourself – can’t do what you used to do? You’re only human! Remember that you’re still the same unique and valuable person that you always were; Try to have positive people around you…that supports your life moving in a positive direction; Work with art. Creative outlets are rewarding and fun. These are things that encourage and grow you as a person – with or without others’ approval.
Many times, people in your life are grieving the loss of the “old you” and trying to establish how to interact with the “new you” – just like you are. That can also make an awkward transition for family and friends. Seeking spiritual counsel can be a huge boost as well – if you attend a church, synagogue, etc., or want to…that could be a great way to grow your positivity in life and make some new acquaintances too.
Here’s another excerpt from Lost & Found: “Keep in mind that your family members and friends may be grieving too. They have lost the person you used to be and the roles you used to play in their lives. They don’t know how much of your former self will return, or when.”
And a quote from the same book: “Honoring your feelings is what helps you move beyond the pain.”
— Janelle Breese-Biagioni
This last excerpt from the book really sums up what so many TBI survivors need to hear…
“Remember you are healing, even if you can’t see a wound! Think of your brain in a cast, as it would be if you broke any other part of your body. If you broke your leg, you wouldn’t expect yourself to run a marathon right away, even if you were previously a marathon runner. First, you would be in a cast and you would rest a lot. Then you would start walking with crutches on even surfaces. The next step might be walking with a cane. You get the idea; it would take a lot of healing before you could run again, never mind run a marathon! Most of us try to run marathons with our brains all the time!
You won’t be able to do everything you used to, at least not right away. Everything will be harder and take a lot longer to do than it used to. You can compensate by cutting back, simplifying and being kind and patient with yourself. Avoid the tendency to push yourself too hard. Rehabilitation is a delicate balance between challenging yourself enough to promote healing and not so much that you have discouraging setbacks.
So picture yourself with a cast on your head and remember to rest, celebrate the smallest gains and balance out all the hard work with something that makes you smile, every day. You are engaged in one of the toughest challenges of your life, if not the hardest but it will get easier in time.”
Root for the Home Team…YOU!
In closing, the hardest takeaway from all this is that “going it alone” is hard but doing it without positive people surrounding you may be even harder. Cheerleaders are great, but they have to be rooting for the home team…and you’re the captain of the home team! Make the best choices that you possibly can and be encouraged – knowing that if all else doesn’t go as planned, you can rely on yourself to try and make things better. And you can also claim all of the credit. As always, be sure to let your doctor(s) know your intentions, and hopefully, they’ll be excited for your long-term efforts to improve. TBI is tiring, overloading, depressing at times, and can cause irrational behavior. With all that said, there’s always room to plan for incremental change.
Here’s a great and inspirational quote from Beverly Bryant:
“Being a brain injury survivor = Being a stranger in a familiar place.”
Amen to that!
If you’d like to know more about the Lash & Associates book titled “Lost & Found”…just click this link!
“More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled, or aged family member or friend during any given year and spend an average of 20 hours per week providing care.”
-National Alliance for Caregiving in collaboration with AARP; 2009
Caregivers experience a level of stress that is often misunderstood. Long-term caregivers may suffer deep emotional upset, and burnout with little relief. The caregivers of traumatic brain injury survivors are people who have been called to walk an extraordinary caregiving journey, often without warning or preparation.
How can we help? Are there practical ways to incorporate the “It takes a village” philosophy into the lives of caregivers that you know? The answer is yes, with a little work and a lot of heart, you can assist those who are in a constant caregiving role.
As a caregiver who often feels lonely and overwhelmed, I’d like to offer some practical solutions that have been helpful to me.
1. Get Specific
Instead of saying, “Let me know what I can do to help,” come up with something you can do, and present it. This is something we are all guilty of doing from time to time. As someone who has been in the throes of caregiving for four years, I find it’s most helpful when someone designs a specific plan and sets it into motion.
For example, “I’d like to prepare dinner for your family once a month. You pick a day, and we will make it happen.” Or, “Let’s plan on my giving you a break, the second Wednesday of every month from 4-7.” This helps the caregiver to see that a break is in sight and set up activities of her own.
It’s important to remember that long-term caregiving may make someone feel as if her resources have been depleted, making it more difficult to reach out. When someone offers something specific that will help in a concrete way, it eases part of the burden for the caregiver involved.
2. Offer Clear Praise
Avoid saying things like, “All things considered; you are doing a good job.” Or, “You are doing the best that you can.” Instead go for specific, genuine praise that doesn’t leave room for questions about what the words you are saying might mean. For example, “I know it’s been a challenging four years, you are handling it so well.” Or a simple, “I just want to let you know I care about you.” Build the caregiver up, recognizing that their bucket may feel pretty empty at times, and they need a reserve to refill it.
Once, after an unexpected hospitalization, a dear friend looked at me and said with tears in her eyes, “You are my hero.” I knew that her sentiments were genuine. For the next several days, when I felt defeated, I focused on her praise. It not only lifted my spirit but also made me work harder in my role as a caregiver. Genuine praise is the wind in a caregiver’s sail.
3. Practice Compassion
The caregiver is often pulled in many directions from sun-up to sundown. After spending a month with us, my thirty-year-old nephew said to me, “I don’t know how you do it.”
“Do what?” I asked.
His response: “Life.”
From afar it looks easier than it is. After a time, caregivers pick up on the fact that they can sound like complainers, so instead they often hold things in. Holding in feelings can result in growing frustration. People who offer compassionate understanding when I am overwhelmed allow me to vent in healthy ways.
When a caregiver comes to you and is comfortable enough to share her frustration, please stop, look, and listen. In other words, take time to take in what her reality may look and feel like from her perspective. People often put caregivers on a pedestal, but they get grouchy, groggy and Grinch-like too. Acknowledging the difficulties they face allows them to get to the next step. Denial is unhealthy for everyone, but when faced with continual strain, it is important to have reality checks and friends with whom you can honestly share your feelings.
4. Recognize the Importance of Human Touch
If your finances allow it, consider the gift of massage for a caregiver. Recently, I gave myself this gift and was struck with how much better it made me feel. The massage had barely started, and I could feel the sadness and tension in my entire body. I told myself to relax and let the nurturing take place. Within a few minutes, while lying on the massage table, I began to weep. I was then overcome with such deep sadness, that sobs began to erupt. The therapist’s touch had released a trigger in my body to let some of the pain inside come to the outside. My reaction was not uncommon in this setting. Often, just providing someone a safe place is all that person needs to have the release occur. Caregivers often get in a cycle of not making space for self-care; sometimes a gift is the nudge they need to break away for an hour or so.
5. Less Judgment, More Lovement
I have shared this phrase before in my posts and blogs, but it bears repeating. The caregiver’s life is demanding. We are presented with challenging scenarios, which are new to us. We have to make the best decisions we can in a given set of circumstances. And we make mistakes.
We must decide on things like when and if we should call an ambulance. We have to be the voice for a person who often resents our having to take that role on for them, and we also have to find our own lives in the mix of fully assisting someone else.
Most caregivers I know deal with some level of anxiety, guilt, and frustration that resulted from their caregiving role. At the end of the day, they do need more love, because they are required to give more love away.
These are just a few ways to help caregivers be the best they can be.
Many survivors and family members describe changes in their relationships after the injury. They may not hear much from friends, co-workers, and extended family members. Others notice that their phone calls, emails, and letters are left unanswered. Some survivors find themselves feeling alone even when they spend much of their time with family members or friends. Here are some of the things people say about their relationships after brain injury. Do any of these statements sound like things you have said?
- I can’t relate to other people. It’s easier to be by myself.
- What happened to all the friends who came to visit me in the hospital?
- Other people don’t want to be around me.
- People seem to avoid me.
- My wife threatens to leave me at least twice a week.
- I wonder why no one returns my calls.
- It seems like everyone at work has lost my phone number.
- I haven’t talked to anyone in weeks.
- Nobody cares about me.
- I don’t have any friends.
- Seems like nobody wants to talk to me.
- Nobody has any idea what I am going through. They don’t understand me.
Why people feel lonely even when around family members or friends?
After injury, many survivors describe feeling lonely — even when they are surrounded by other people. This loneliness may arise for many different reasons.
- Difficulty talking to other people or understanding what others are saying are common problems survivors face after injury. Communication problems can make relating to other people and explaining your thoughts and feelings very difficult. These problems can lead to feeling misunderstood and isolated.
- Many survivors feel self-conscious after their injuries. They may worry about being different or less capable than other people. Self-consciousness can make it harder to spend time with other people or seek out new relationships.
- After injury, many survivors worry about what others will think of them and may feel nervous about being around other people. They may be afraid of being hurt or rejected by other people.
- Many survivors notice they are more irritable after their injuries. When irritated, they may say or do things they regret later on. Some survivors try to stay away from those they care about for fear of behaving poorly. Family and friends may also avoid you if they are worried about what you might say or do.
- Fatigue and low energy are common problems after brain injury. Survivors may not have the energy to do things they used to enjoy or to spend time with friends and family. Family and friends may also worry about tiring you out when they invite you to do something.
- Pain and other physical problems often make it harder for survivors to do things they used to enjoy. You may also have trouble leaving the house, traveling, or visiting other people. Injury-related limitations make it harder to nurture and build relationships.
- Many survivors are not able to drive or work after their injury. Lack of transportation and money may make it hard to visit others or do things you enjoy.
- People generally make friends through work or being involved in social or recreational activities. After injury, survivors often stop working and may not be involved in sports, church, and other activities. You may lose contact with friends and co-workers because you don’t see them as much.
- Friends and family may feel uncomfortable because they don’t know what to say, how to act, or how to help. Discomfort may make it harder for them to relate to you or spend time with you. Help them out by letting them know about your positive and negative feelings and what they can do to help you.