Saturday, March 19, 2016

What to Give to A Grieving Family? How to Support Families of Patients in ICU/Hospice/ Death or Trauma. A Practical Guide to Care for Intensive Care Unit Patients and Families.

*This post can also be transferred over to helping support people grieving in death or in a trauma situation too.*

My Husband's mom 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. 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. Being in the ICU has had me thinking about how people can help support families of ICU patients. This post also applies to Hospice situations. 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:


1.) Financial.

For some, the thought of giving money may feel heartless or cold because most people want to be in on the emotional aspect of support. Some 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. (This also applies to Hospice.)

This is also a good idea during a death. Death is expensive for the family and it's the last thing they need to think about. 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 a significant loss. 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. This also applies to family of a deceased loved one.


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 or a loved one after death or the hospice experience, 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. (Post Note: Our mother did pass away within the month of this post.)

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.

Cutting your Ability to Support in Half. For During the Difficult and AFTER the Major Moments: 

Do half of what you can give in the high intensity moments, and give the other half once recovery or or funeral is over. 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.

Taking Care of Your Needs too and Personal Boundaries:
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.

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:


FlutistPride said...

Do you ever feel empathy pangs? Those bursts of pain you get when taking on the pain of something else? I am an emotionally sensitive ESTP and I get them. I think you might get them too because you seem to be very empathetic. This post gave me MAJOR empathy pangs, not because I or someone I know has been to the ICU, but because, thanks to blogs, I have been in the heads of those who have. Empathy pangs feel like I'm getting stabbed in the heart, suffocating, and being restrained at the same time.

Hugs to everyone in the ICU (patients, their loved ones, doctors, nurses, and others)!!!!! 💗💖💕

Kmarie A. said...

Yes I Do. as an INFJ type whom is notorious for weird almost physic pain feelings of empathy, I have had to learn to turn this off or lower the volume of it down with boundaries. I could see how you would also get them and it is tough...And I completely understand that empathy pangs and how painful they can be.
thank you for your hugs and thoughts!:) I appreciate that.

S said...

Kmarie, I am sorry to hear about your mom-in-law's struggle. My flat owner , both the husband and the wife have been detected with a life threatening disease, at the same time (when they went for a routine check up )and the wife will have to undergo a major surgery soon. One of them is already receiving chemotherapy. I spoke to the wife, and she is very strong mentally, she was telling me to calm down instead ! I have noticed that when someone goes through a very serious ailment, I get extremely affected and disturbed. My husband tells me to do meditation daily (to face these situations in a calm manner which I can't ) which I have not been doing since a long time.
I found one book regarding this subject which may throw some light on how to understand such a crisis which is common but we are unprepared for. It is written by an experienced surgeon. The book is called Being Mortal. The link is :
some other links on the same book ;

Take care,

Kmarie A. said...

S: Thank you. That sounds so hard to have both spouses fighting for health. So sad! Life can be so hard. yes you are definitely an empath too. Yes I find meditating helps too. I am going to check out those book links now...thank you so much. With love...xo

Kmarie A. said...

Wow S! I am BLOWN AWAY by that book...some quotes that have resonated:
"you don’t have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. They are spent in institutions—nursing homes and intensive care units—where regimented, anonymous routines cut us off from all the things that matter to us in life. Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers."
"We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?
If to be human is to be limited, then the role of caring professions and institutions — from surgeons to nursing homes — ought to be aiding people in their struggle with those limits. Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life."

"You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.”
“It is not death that the very old tell me they fear. It is what happens short of death—losing their hearing, their memory, their best friends, their way of life. As Felix put it to me, “Old age is a continuous series of losses.” Philip Roth put it more bitterly in his novel Everyman: “Old age is not a battle. Old age is a massacre.”
“Our ultimate goal, after all, is not a good death but a good life to the very end.”
"Medical professionals concentrate on repair of health, not sustenance of the soul. Yet—and this is the painful paradox—we have decided that they should be the ones who largely define how we live in our waning days.”

I am ordering the book...and this hits the nail as to why this whole process has bothered me a bit and why each time I go see her I try to bring a tangible comfort of the sensory or the soul...

Ashe said...

Your timing with this post is unnerving. I'm having fun on both sides of the family.

Hospitals charge parking fees in Canada? Maybe Americans in big cities do it too. The rural and small towns I go to have free parking.

One of the wonderful things about living in such a technological age is that you can send well wishes and provide support long-distance if your finances and time get in the way. Even though technically you're not supposed to use cell phones in hospitals, if you've got a contact there they can go outside to get to messages relay to the patient and status updates to send to you. A little something is better than nothing.

Digi-hugs to everybody else enjoying the pleasures of health issues and getting a vacation at the big white hotel.

Kmarie A. said...

Ashe: I am so sorry you are going through that with both sides. Hospitals rurally do not charge but in urban centres it is insane...but I hope or think it goes to hospital costs...optimistic?:)

Yes it is nice to have technological support. I think a lot of people use cell phones in hospitals except for near heart stuff ect...I think you can if you turn your wifi off and read a book or least that is what I thought!:)

I wish you luck too in your supportive endeavours. I hope for peace.

S said...

How is your mom-in-law doing now ? Hope she is getting better. I also hope that this book may help you. I think that caregivers go through much pain too as the act of care giving drains the care giver in some ways and the care giver too needs some support. I have seen my husband deal with many crisis situations-he is very detached and calm in crisis and that is something I am not.He tells me that emotions can ruin the situation. Emotions ( such as fear, anxiety of the outcome, extreme sadness for the patient , etc.etc. )can ruin our ability to live in the present. When and if something gets better tomorrow, we will regret that we have wasted our valuable time in worrying( which could have been utilized better )or perhaps we have drained ourselves so much that we forget to even extend help to the care givers. For example, when both of us were going through a crisis, I could not even cook breakfast or dinner for a few days( out of anxiety and fear ), yet my husband did all that -although both of us were facing the same situation. From him I have learnt that we cannot lose track of the present moment-the future might get better ( or it might not ) but we can save the present moment by being positive and hopeful. Although it is not easy to do that ( as I have anxiety issues myself), yet we should not get so distracted and disturbed that we stop living every day. Meditation helps a lot pulls us out of the chaos and makes us see events with clarity ...helps us in accepting events as they are rather than trying to fix it ...We need a lot of mental strength to face disturbing situations and meditation gives us that. I have seen my family going through a lot of crisis and I was the weak one. I broke down in crisis. My husband and my mom are the strong ones ...who gives me hope and tells me to pay attention to the present moment, to concentrate on my routine tasks of cooking,cleaning etc. etc. and not get swayed away by whatever is happening around me. We can be care givers , have feelings for others yet at the same time, we cannot lose focus on what needs to be done, daily at doing the basic things, doing dishes, etc.etc. We can be with the patient, with another caregiver yet we have to detach ourselves from the heavy energy that is coming to us from the disturbing environment. At the end of the day, whatever you experience, negative or positive, but remember to keep your heart and soul "soft" , don't let the soul be hardened by the heavy/difficult experiences.
Hope I am not saying anything out of context here...but wanted to share something that I have gone through. take care,

Kmarie A. said...

S: Today she is responsive because they turned her pain killers down. She may have another procedure today and if she does it will be another setback. Hopefully, if she keep up with how she is now though the future could be positive.
Caregiving is so tough. Luckily my father in law has had a lot of support with his siblings coming up from the states, my husband and I have been up there 5 times and will go again soon...her sister has been especially dedicated ( both of them actually) but her one has Lupus herself and it has taken its toll yet she has been AMAZING. When we go we also try to support her.

As for myself, I am like you in ordinary life and in depressions ect...or medical things for myself...but when it comes to other peoples traumas I get weirdly calm. When my son had a crazy concussion I was so calm in the ambulance and asking all the right questions and my hubby had a harder time. The same is happening once again- tho he is doing very well considering he adores his mom and she holds a huge part of his heart. IT's tough to see loved ones hooked up to so many things and reduced to childlike states.

Meditation helps a lot...I am not strong in small moments of sensory overload ect...and my therapist has always told me when I freak out and tell him, "How am I going to handle trauma or death if I have to see you every month in order to just get through the daily!!!??" and He replies, "I have seen your personality in trauma ( he used to be a surgeon). YOU will be the one holding it together. The people who tend to have a tough time in ordinary life are like steel in those circumstances. You fall apart later by seemingly small things." So maybe that is why?

I think that is beautiful what you say about boundaries and keeping yourself away from heavy energy. I have learned that over the last few years and sometimes I forget to apply it and get sick. Its so important. It is important to keep the soul soft.

You are not saying anything out of context. You sharing your experiences helped me voice mine...and I could relate to much of it...especially in ordinary life moments for myself that seem tough. You said many beautiful things and I always enjoy your words. Thank you for your encouragement and support. I am so glad we met on the old blog years ago. You have become an integral part of my circle.