After The Caregiving Ends: Reflections

Caring for someone 24 hours a day for months or years is not easy. It requires undivided attention, loving sacrifice, and unending amounts of energy. You sacrifice your needs for another and your focus becomes their well-being and comfort, even above your own. This burden is a gift of love; it is a way to show the care recipient how much they mean to you, and to repay them for what they have done for you. The honor of giving to another in this way has been documented as the primary motivation and reward for the sacrifice that is made.

This intense other directed focus comes to an abrupt stop with the care recipient dies. Suddenly, in an instant, their need for you is gone. In one instant, you no longer have someone to care for; in fact you may be the one that requires care.

Initially, the experience results in feeling of freedom. The day my husband died we went to lunch after the crematorium removed him from the house. My children and I realized we could park anywhere without concern, we could go to the place of our choosing, and walk at the pace we wanted to walk. I did not have to worry about holding onto anyone, nor worry about a fall, or the inability to navigate rises in the pavement or stairs. I only had to focus on what I wanted for lunch, something I had forgotten about. The feeling of freedom was not a feeling of loss, it was a joyous relief, and it was accompanied by some guilt.

Another odd mix of emotions can show up when its time for the world to get back to normal for everyone else. With the activity that had been occurring in the house for the previous months complete, all the family, visitors and social support leave. The children began living their lives again, and the house became quiet. Initially, there was a freedom in choosing what is on the TV, eating whatever and whenever I choose, and doing whatever I needed or wanted to do with free time. Yet, at the same time, the realization can result in sadness and loneliness.

Feelings of freedom and loss appear at the same time. I have missed not having anyone to take care of, and not having anyone to worry about me. I have missed focusing outside of myself. There has been no one to help me think through problems, no one to help me dream. There has been no one to cheer with during football games on TV as the dog and I learn to enjoy exciting games with no one cheering. There has been no one to help with any of the work around the house, if I don’t do it, it does not get done! Little did I realize how long my husband had been doing some things, like feeding the dog. I have had trouble remembering to feed the poor dog, even close to two years later. It did not take long to realize that every single household matter ends up in my lap alone.

Recognition and discussion of post caregiving adjustment has been lost in the midst of grief research. While intertwined with bereavement, some of the feelings are unique to those who had intensive caregiving prior to a loss. For professionals helping the bereaved, I suggest you consider the additional complication when someone has had daily caregiving demands over a significant amount of time. For those of us who have experienced caregiving and grief, don’t find yourself surprised as you hear your name called out at night, find yourself stopping to help your deceased care recipient up the stairs, or hearing yourself automatically pointing to the ground and telling those with you to be careful of a rise in the sidewalk so they do not fall.  Caregiving habits are hard to break.

Supporting those experiencing grieving through the holidays

            This is now my second holiday season without my beloved David. The realization that I am now an experienced widow is of no comfort. I had read where the second holiday, like the second year, might be more difficult, and for me, that seems to be the case. The protective feelings of numbness and shock are gone, reality is in full force everywhere I turn. My expectations of myself were higher this year, and that was unrealistic.

            It is possible to search the Internet and find suggestions for ways grieving persons may survive or manage the holidays. Finding an individual path through the grief may include travel, the establishment of new traditions, or the total immersion into traditions of old. Whatever the choices, while everyone around us is experiencing holidays filled with love, joy and merriness, we are not necessarily. In fact, we most likely are fighting feelings of loneliness and depression. We are overwhelmed with loss and emotion, and even when we experience rare moments of joy, the joy may bring emotional reactions. While all the suggested survival hints are helpful, nothing is more helpful than having the support of friends and family. The obvious question however is, what can I do to help someone is grieving during the holidays?

            One of the most important ways friends and family can help is to be supportive, regardless of choices. Last year I chose not to decorate, I could not face getting out the decorations. I was so lucky that my family supported me and did not try to talk me into trying to “get in the spirit”, rather they respected that I simply needed space from the emotional traditions of the past. Had I been questioned or encouraged otherwise, the judgment of their decisions would have amplified my loneliness. If on the other hand I had decided to try and go through the motions or chosen to maintain traditions, offers of help would have been very appreciated. This year when I got the decorations from the attic I had my three year old grandson to help. He thought nothing of my shaking voice or quiet tears as I told him the story of the ornaments. Perhaps a new tradition was made. Another help last year was my daughter in laws offer to host our family Christmas, especially since I had no decorations. The holidays involve not only the emotional burden of the loss but also the reality that I must do all the holiday work alone. Offers of practical help can be very valuable! This year I have enjoyed invitations from my friends to do holiday things together. Thanksgiving dinner, dinner parties, and even shopping with friends have made things more fun. During those visits we have remembered and laughed together. Nothing brings more comfort and joy that sharing memories and stories of David.      

            One very silent and yet valuable way to show your love and support is by recognizing the loss and letting it be known that you miss that person as well. Often with an intention of protecting my feelings, people avoid mentioning David. The silence of those around me can contribute to the loneliness. Although my head knows it is not true, it can be easy to believe that everyone has forgotten and moved on, leaving me alone in my loss. No one else lives with the loss every day, so knowing someone else is missing him too is very comforting. Sharing a fun story or memory is helpful, please go right ahead. Another friend made a donation in David’s name. When I got the acknowledgement it let me know that someone else was remembering him, and his love for his favorite charity. There are many ways that friends and family can help support those grieving in this time. Above all else, be there and recognize the struggle. If you witness some tears, please ignore, it’s just the love seeping out, and I’m touched that you may feel it too.

How can I tell if my family member is in pain if they can’t tell me?

Research from my studies show that family members have many challenges assessing a loved ones pain. It is scary giving narcotics that you have been told are addictive and dangerous, even fatal. When your patient is well enough to tell you they hurt or decide for themselves they need medicine then you feel fairly comfortable. Once their disease has advanced and they can no longer communicate, you have to decide if they need the pain medicine, and it can be very scary. We have had caregivers tell us they are afraid they killed their loved one with the final doses of medicine because they were just guessing or doing what the doctor said, even though they were unsure if they were in pain.  Below is one of many comments caregivers have made regarding trying to decide if they should give medicine.

Once the medication was started, I think that he was probably in more pain than we realized sooner. And again, because he may not have been able to tell us about the pain, and maybe he wasn’t seen by his regular nurse right at first there might have been some problem . because, when In reply to: would ask him, he would say he was not in pain, but his actions indicated, the nurse was able to determine he was in pain.

Below are some hints that can help you determine if someone is in pain and if you should give the prescribed medication. You can assess 5 different ways the pain your loved one may be experiencing.

1. Look at the Face- People in pain often show it in their face. They may have a grimace of some kind, they may have tears, eyes may be closed as they are concentrating on not hurting. There is a Faces of Pain Scale that can help in the rating of pain if someone can’t tell you.

2. Breathing- How heavily are they breathing, are they struggling? Pain can take a toll on the respiratory system as the body compensates for the discomfort. Their breathing may be more rapid than normal as the body works harder.

3. Movement is another thing to observe. Do they favor one part of their body? Are they constantly moving around in an effort to get comfortable? Do they appear restless? Are they rubbing a part of their body?

4. Sounds are another good indication, even when someone is sleeping. Are they moaning or making unpleasant sounds, especially when they are moving? This could indicate pain.

5. Can they be comforted in some way without medicine? Sometimes ice, or heat, or darkness, light, massage, or even repositioning can help. If those things bring relief then medication may not be needed.

Palliative care and hospice physicians tell us that we should always believe the patient when they tell us they are in pain. They also tell us its important to stay ahead of the pain and not let it get out of control because once it does it can be difficult to get back in control. When caregivers need to rate the pain for their loved one these five things may help you decide, so be observant and note these “symptoms” of pain.

Research published by Debra Parker Oliver, Elaine Wittenberg-Lyles, Karla Washington, Robin Kruse, David Albright, Paula Baldwin, and Amy Boxer, "Hospice caregivers' concerns with pain: "I'm not a doctor and I dont know if I helped her go faster or slower" Journal of Pain and Symptom Management 2013 46(6) p846-858.

Writing: A Way to Cope With Caregiving and Loss

My husband was diagnosed with Stage IV cancer. Over the course of the 42months from diagnosis to death we experienced oncology care, palliative care, and hospice care. Over the years, we learned many different ways to cope with the emotions and challenges we faced along the way. One of the most valuable tools for us was writing.

Throughout my husbands illness we both kept a detailed journals of our personal emotions and experiences. I chose to journal not only as a way to record events but also as a way to let some of the emotion slowly seep out from behind the floodgates I built to maintain control. At times, my only release of the most emotional experience of my life was when I could privately spill my feelings onto the page. 

From these journal notes I wrote a series of essays sharing my private emotions with those who were helping patients and caregivers go through similar journeys. The writing of these personal reflections helped me organize my thoughts and communicate my feelings not only to my health care team, to the public, but even to my dying husband. As my chief editor he read and critiqued all my writing. I remember after he read the essay on “The Journey of a Million Losses” he turned to me and said, “Wow, now I understand why you have reacted to me the way you have.” That essay opened an important dialogue between us that never would have happened otherwise.

Admittedly there were times the hurt and exhaustion were too deep to write. In fact, the feelings were so private I feared writing them down. Embarrassed and guilty of the anger I sometimes felt, and exhausted from the emotion and energy required near the end, there were times I was unable to write my thoughts or feelings. However, when I pushed forward and wrote I found it very helpful. It was not only helpful at the time, but it has continued to be helpful now as I go back and read the narratives and analyze the experience.

In the months since my husband’s death I have found comfort in the review and organizing of both sets of our journals. I have found it therapeutic to let the tears flow as I write stories that I do not want to forget. I have also round it useful to share our notes with our children as we together remember and reconstruct those months.

Writing continues to be an important way for me to cope with my grief and reorganize my life. For those who have not tried it I encourage you to start slow and find a way to put your emotions on paper, let off some pressure, and try to understand your thoughts. It not only helps for now, it will help you as you some day want to go back to understand the events of the illness and journey in an effort to understand and honor the one you love.

Defining your wishes for your family: A gift of love

Depriving Death of Its Strangeness: Making Wishes Known

In the above video my husband David discusses how he wants to die. He developed an easy to remember acronym for what was important to him. Using the word HOPE he helped us understand that he wanted to die at HOME, surrounded by OTHERS, PAIN free, and EXCITED until the end. With these statements I understood his priorities.

As his surrogate decision maker I knew that he wanted above any other place to die at home. As his condition declined and his safety became an issue I was able to remind him that this choice meant he needed to listen carefully and comply with our safety precautions so he did not fall and break a hip and end up unable to be taken care of at home. His resistance to using his walker diminished as he understood his own goals were at stake if he took unnecessary challenges.

During his final hours I used his desire to be surrounded by others to initiate a "party" the night before he died. Our closest friends and family were able to be present and say their goodbyes and share stories with all of us. Even though he was unable to communicate, we knew he was enjoying having us all surrounding him, laughing and remembering, telling him we loved him.

His desire to be pain free, even if it meant sedation was very helpful as I administered narcotics very frequently during his final hours. He had been very clear with me that he wanted as little pain as possible, even if it meant he would be unable to communicate. As a result I never feared the narcotic dose I was advised to administer, and I feel good knowing his wish was honored.

Finally, his desire to be excited until the end kept our entire family involved in keeping him motivated and engaged in our lives for as long as possible. He lost consciousness 24 hours before he died but until this time he was laughing, teasing, playing games and interacting with us, even if only for short times. Those final memories are special for all of us and I know he was making the most of every moment he could for as long as possible.

Completing a document with your wishes is important and can be helpful. However, the most important part of this process is talking to your family about exactly what the means. What is quality of life for you? How much pain are you willing to be in for the sake of being able to communicate? Who do you want to surround you as you die? Where do you want to die? These are discussions that all families should have with one another, and certainly questions that surrogate decision makers need to have the answers for!

Take time this holiday as you gather together to discuss together your wishes!