Family and friends of Moyamoya patients (or any other disease for that matter), I write this post with you in mind. Your love, care and support for the patient is what motivates him or her to get better. Trust me, I have been on the receiving end and you have no idea how grateful I am for that.
How exactly can you help? Here are 6 ways that you may wish to consider:
1. Be the brain.
When I first became ill, it took a herculean effort just to think amidst all the emotions that ran amok. I was extremely fortunate because Steven is a very pragmatic person and almost immediately he started to do all the necessary research on my behalf. As a matter of fact, I did not read up on the bypass surgery until the year that I had to undergo the operation. I simply wasn't ready.
It is very important that you equip yourself with knowledge so that you are informed of the various options that are available. Don't be afraid to ask questions and for help. If you have difficulty with medical jargons, ask a family doctor or friends to help explain. This is not the time to be shy or proud.
Whenever possible, accompany the patient for the appointments. You have to be the brain to store and process information that can be overwhelming. Keep a notebook to jot down information that you receive from the doctor if needed.
2. Be the source of positive emotions.
My sister, LC, is a nurse. On top of her demanding responsibilities, she visited me during her break and after work almost everyday. She would say things to amuse and make me laugh. One of her favourites was, "my sister is the most wonderful sister in the whole wide world!" Then she would wait for me to smile. She understood that positive emotions need to be cultivated intentionally.
Do not forget your humor in the midst of adversity. It is actually a powerful weapon that can get your through challenging situations.
Bring objects that may trigger memory of a wonderful time spent together. Simple act like holding hand brings tremendous comfort and sense of closeness.
Hugging is a great alternative. Be generous with your hug because it is a positive exchange of energy. Healing is sometimes simply having someone to hold you and feeling their love, care and compassion. Give a gentle, long and loving hug. That will surely increase the good chemicals in the brain not just for the patient but for you.
3. Listen attentively and without judgment
This is actually harder than you imagine. Listening with the heart can be very difficult because you will feel vulnerable and helpless.
To cope with this distress, I have noticed that many of my friends (with their best intentions) would rushed in to offer comforting words. Sensing their discomfort, I tended to change the topic of discussion.
If you are the spouse, a family member or a close friend, I will strongly urge you to listen to the patient. Attentive listening requires you not be distracted by your phone, work, and other pressing issues. When you are with the patient, give your full attention and listen - to her/his fears, worries, sadness, anger, frustration, hope - without interruption. Avoid rushing in to solve the problems, dismiss the emotions and/or offer platitudes.
What is of essence is the quality of your listening and not the wisdom of your words that you are able to effect the most profound changes. Your listening creates a sanctuary and haven for the patient to express what is hidden and frightening.
If this is foreign to you, fear not. This article provides a great start to the art of listening.
4. Visit often
If the patient is in the hospital, please make effort to visit as often as you can. Let me tell you why. It is very dull being in the hospital. Your presence makes a tremendous different.
Except for those who are comfortable with full attention, craft your conversation in such a way that it is balanced. Talk about your day and what's going on in your life. This serves as a good respite and distraction for the patient.
5. Offer assistance.
The best way to discover what the patient needs is to ask him/her. Avoid making assumptions.
Some of the ways that I have found helpful are:
1. A friend who is a nurse introduced a neurologist when I was looking for someone for second opinion.
2. Another made home-cooked meal and froze them, so that I didn't have to worry about food.
3. Volunteer to be a gatekeeper in the ward. Sometimes it is awkward for the patient to tell the visitors to leave and this is when the gatekeeper can step in.
4. Friends who volunteered to help me disseminate any updates to other friends. Instead of texting 100 friends, I only need to text 25. That helps!
5. Accompanied me for admission to hospital when Steven and my sis were not available.
6. Be a runner. Picking up items that the patient may have forgotten to bring.
7. Pray. Invite religious leaders of the same faith to visit and pray for patient.
8. A good friend compiled a list of songs and burned them into Compact Disc. (Yes, i was still stuck in the world of CDs and discman). It was a lovely gesture and as I listened to the selection, it reminded me of her love for me.
6. Taking good care of yourself
If you are the primary caregiver, you need to take care of your own needs in addition to the needs of the patient. Do not neglect your needs because this will lead to burnout. Take time off whenever possible to rejuvenate your spirit because taking care of a patient is seriously draining.
You need to allow yourself to grieve as well. When your spouse/sibling/child/friend is sick, you lose a part of them. Grieving is a way of self-care, according to Dr Remen. Pay attention to your own emotions and if you have trouble managing them, do not hesitate to find support or seek professional help. Whatever it is, do not go through it alone.
Talk to close friends about your thoughts and feelings. Process the emotions rather than suppressing them. You might also end up being the punching bag for the patient since you are the closest person. These are difficult emotions to deal with.
Close friends should also pay attention to the primary caregiver and offer to give them respite whenever possible by taking over some of the responsibilities.
To help the patient effectively, you need to be strong and healthy yourself. Thus it is paramount that you show the same compassion and care that you give to the patient to yourself.
Being ill is often perceived as a misfortune. However, it can also be an opportunity where patient, family and friends band together and grow closer and stronger as a result of this experience.
If you have other suggestions that have not been addressed here, please feel free to add them in the comment. That will be a great help.
Pass this on to someone who might need it.
Come, let's flourish together!
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Bite-size tip: Pay attention to your breathing.