*This post can also be transferred over to helping support people grieving in death or in a trauma situation too.*
My husband's mom has been in critical condition after a surgery and has spent the last few days in ICU after a week of being in a regular ward in extreme pain. To most of the family it was an unexpected turn of events. Because I have witnessed a similar surgery with two people in my life, I was not surprised but I was thrown off guard by how long the medic teams took to put her in ICU. Now she is on life support, has had blood transfusions and been through what I would deem hell on earth enduring horrid procedures and invasive treatments. Just two weeks ago she was feeling sickly but one of the most vibrant people we knew. To see the dramatic change was especially shocking for my husband.
I have an adverse reaction to hospitals in general and dislike hospital emergency departments and rooms. Sensory overload with the fluorescent lights, beeping machines, overwhelming sounds, and constant social engagement is really tough. However, in the Intensive Care Unit, I have found the one place in the hospital that I thrive at being supportive and stable. I have been a support in the ICU before and found it easier too. It's not easy to see the people we love hooked up to machines and fighting for their lives, however, I find it easier than seeing them conscious struggling to deal with pain. It's quieter in the ward, controlled, and calmer. Typically, it's also cleaner and it is often a separate wing from the rest of the busyness of the hospital. I am actually worse at support and visitation when patients are in any other wing, but ICU I manage generally quite well.
Being in the ICU has had me thinking about how people can help support families of ICU patients. The following list has ways of support, numbered in order of importance, if you are wondering how to help or aid people in these circumstances:
It sounds heartless or cold because most people want to be in on the emotional aspect of support. Also, people do not love to throw cash at a situation and not see results. However, this is the BEST way to support families of loved ones in ICU. Unless there is a child under 18 in ICU, there are not free supports to help the spouse or loved ones stay the nights. Sometimes the medical staff will allow a chair to be pulled up to spend the night, but when the ICU care lingers on for weeks at a time, this isn't feasible. Hotels will give 20 percent off, if there is a signed form from the hospital, but even within that, it adds up fast after days upon days. Most people do not have the budget for constant hospital trips, hospital parking (which is INSANE), food, work days taken, and fuel to travel back and forth.
In order for the spouse or close loved ones of the family to be a part of things, they need to know they have the finances to sustain the support. Our father in law is retired and savings are meant for living costs which makes this situation tougher. Each time we have gone up to the city hospital to ICU we try to pay for at least one of his meals and bring him anything he would request at our cost if possible. We know others are doing this too, which helps, but he could use more support. We have contacted his church and they will also help him if possible within the next few days.
Coming from our situation, as the son and daughter of the person in ICU, we have also not been able to go up as much as we would like due to finances. My husband has already taken three days of work to be a support and also for his own sanity as he wanted to see his mom every day. We have gone up consecutively three days in a row. My husband is very close to his mom and they both have a deep understanding of each other, especially in the last few years. Being the baby of the family, his mom is the closest one to him. For us, the money for the last three days of work lost, childcare, fuel, food and parking has already equalled over a grand of loss. That's just three days. It was worth it for us but we can not imagine how hard it must be for people who have to be there constantly. We are very grateful we have such a supportive work team and site manager for my husband. Understanding goes a long way.
When you are not worrying about money, it is easier to be nourished with food and rest, so that one can support to the best of their ability, the person in trauma. Whether it is gift cards to gas stations, food places ect, prepared meals within the diet of the person affected or nutritious baking and snacks to carry along, or cold hard cash...this is THE most helpful way to carry a family through ICU. If you know the spouse or closest member to the patient, give money to them. If you are closer to the children or secondary people to the patient in ICU better, give money to them because if each person does this accordingly, each person will be supported and able to be a better support to each other without the stress of meeting basic needs. DO NOT WORRY IF YOU CAN NOT DO THIS- SEE BOTTOM OF MY POST FOR MORE.
2.) Emotional care, prayers of support, and words of affirmation.
People who are alone in ICU with no other family would put quality time ahead of this and need others to show up to be with them as second instead of third (which I will get to in a minute.) However, people who already have a lot of family showing up don't need the chaos of more people speaking into the situation. But they do appreciate words of support and care. ESPECIALLY if their nutrition, sleep needs, and care of their body is being met (see number one again.) THEN their soul care can commence. If number one is not being met, number two is very hard to process or absorb. But number two is important in the form of cards, quick texts of prayer/thinking support, words on Facebook the person can catch up on when time is available, and garnering encouragement from others for the person going through this is invaluable.
3.) Quality Time.
Obviously this depends on personality as introverts will only want one or two people keeping them company and spelling off shifts in ICU. Extroverts may want their whole family and even some friends present as much as possible. Someone in the middle may need a varying of both. My father in law falls in the middle though he can be more introverted, he also appreciates people around him. He needs down time but he also really enjoys a lot of support. Feel out the situation accordingly. Quality time is offering to bring the family food, taking turns sitting in ICU with the patient while the other gets rest, taking turns learning the details of the situation to pass on to well meaning acquaintances who need updates (because it is hard to absorb in the moment), and tag teaming the nurses and doctors for information and support. Depending on the person, hugs and a shoulder to cry on will also be valuable. A general rule of thumb is if they are a hugger and touch freely in most situations YOU initiate the touch, if they normally are NOT, let THEM initiate but be open to it or only slightly move in and allow them to make the rest of the movements. Only break this rule if you are a spouse, sister or especially close to the individual. If you are close even those who are resistant to physical touch may appreciate this action without being asked but if they pull away, allow them their space.
4.) Acts of Delegation and Service:
Time starts to lose meaning in the hospital. Often the main people involved are consumed by their presence in the hospital and do not get to their homes for days. Checking their mail, taking out garbages or doing basic life upkeep at home doesn't happen. If you live near to the person offer to do one of these things regularly until time of recovery. Make it something you know you can do. If you are a trusted friend, the mail would be a great thing to do, and weekly bringing them the envelopes that look most pressing and putting any junk in a pile on the table for a later date or watering plants. If you are a neighbour or close living friend make sure their garbage from before has gone out. Other examples would be checking up on the home, doing laundry, taking care of the pet, having freezer meals, or offering to be a delegate for other responsibilities.
5.) Follow Up
A lot of people tend to rally together for the most dramatic part of the process when someone is admitted to ICU, impending death or death, or the life support moments. While this is fantastic, sometimes the hardest part is actually later. If there is a death, it is the grinding normality later, after the highs of emotion and drama, that need more support...and that is when everyone else has already forgotten or moved on. If there is recovery, people forget the trauma involved on the patient, that their mind will be forever altered, and that the experience changed everyone involved. Often it's the time AFTER a patient is home that they need support, that they want to see people and need meals brought to them. They are still weak, have been through so much pain, and don't really remember the people who were there during their darkest moment. To them, the darkest moments seem to be in normality. It takes months for an ICU patient to get back on track. For instance, in our mother's case, there is only a three in ten chance of her surviving the first year due to re- occurrence in her certain situation. Obviously that is not something we are dealing with now nor have we informed her spouse of those odds. When speaking to the nurse and doing our own research this information was at hand. If she makes it through she has a long road ahead. She is a fighter but it helps to have support during the first year emotionally and physically to keep on fighting. Pain can become old hat to those not suffering it. For those in chronic illness it is easier to understand that pain is always fresh to the one experiencing it and it tends to require moments of respite and understanding.
If you are a loved one or acquaintance who wants to support families who are going through trauma, a death or ICU, I would advise for you to think clearly on what you are able to give and divide it in half. Do half of what you can give in the high intensity moments, and give the other half once recovery or it has resolved. This way the patient and family gets some support in BOTH circumstances. If you can not give money but have some extra baking, take it to the ones whom you know the most. If you have extra money give some to the person most affected and if you have a bit left over, give to the person you know best in the situation. If you can not possibly give anything physical, and are not near to the situation, send prayers and thoughts, or save yourself for a time you can be near the person involved to listen to their stories later when it is needed. If you are a far away friend that can afford to send the gift of music through a ITunes transfer card, coffee vouchers, department store gift cards for basic needs, or some sort of sensory treat- don't be hesitant to do this- beauty is important too.
Every day life is hard. A lot of us can not be there for everyone all the time. All of us share the human experience of trauma or heartbreak at some point. It is ok if you can not speak into an other's situation because you have enough on your plate. You also need to take care of your needs. Sometimes we just can not think of one more person or meet one more need, even if we have the resources. Let go of that guilt. As an INFJ I tend to want to save the world. I have really stepped back from that the last few years and have created boundaries to make me more accessible to the people directly in my world. However, at times I will send my friends a care package or something tangible, but I can not do it as often as I used to. The one aspect I will always bring to the table is a counselling spirit or a listening ear. I try to use that gift well and maximize who I am, where I am in the world, and the immediate circle I affect and then work out from there.
What I am saying, is that the more you listen to your heart, in both giving and boundaries, the more you will meet the needs around you that are needing you the most. It is ok to let go of the ones you do not. Some people need to work on helping more and others less. Know thyself to help aid others.
May you find solace in support and in your self in the deepest darkest moment. May you have moments of lightness...a smile, a warm breeze, and nourishing food even when your heart is breaking. And I hope that you know, that in each circumstance you are giving by existing. Make use of that.
Song Choice: I felt the Fellowship theme from Lord of the Rings was appropriate as we are all on this journey. Forgive my geeky LOTR analogy, but each person on that journey to save middle earth, gave their own unique gifts to the situation. Without them as individuals we would not have had the whole. While Frodo was the main hero in the story he was supported by ever steady Sam, insightful advice giving Galadriel, wise Gandalf, humourous Pippin, warrior and kingly Strider, and a multitude of other players that helped keep the darkness at bay. The same can be said of each of our roles in the every present darkness of life. We can make a difference simply by knowing ourselves and what we bring to the table. Do not underestimate your story. Life is a drama and better than a movie. We can be part of the beauty as well as the pain.https://www.youtube.com/watch?v=7CXGG3_prGA
This is a upbeat song choice so do not listen if you are not in that space...I just thought I would also add some hopeful happy to the post:https://www.youtube.com/watch?v=yJYXItns2ik