➣ Transition into End-of-Life: A Guide for Families
by Deborah Grassman
There are probably many changes that your family is experiencing right now. Change always involves letting go. This is not easy to do, but it is the major task that each of you are being asked to perform. Things you might have to let go of include: usual routines, financial stability, sharing important events, and ultimately, you must let go of your loved one.
Commonly, people report that they feel helpless and uncertain at a time such as this. However, there are many things you can do that will bring comfort and strength to your loved one, your family, and yourself. Whether your loved one has one day or one year to live, the things listed here can be helpful so that whenever death comes, you and your family will be prepared.
How will I know when my loved one only has a few days or weeks to live? No one can say definitively, but there are four indicators that can provide some clues. Food intake is an important indicator. As people near the end of their lives, they start letting go of the outside world; food is part of the outside world; appetites start diminishing. Forcing them to eat at this time is not helpful; it can even add to their distress as their digestive system is trying to shut down. The second indicator is activity level. As people start retreating inwardly to prepare for death, they get weaker and start losing interest in doing things that they used to enjoy doing. When your loved one spends most of the day sleeping and is not easily engaged in conversation, this is often a sign that death might be coming in the next few to several weeks. The third indicator is change in level of consciousness. Your loved one might be very lethargic or conversely, restless and agitated. They might have periods of confusion or actively hallucinate. This sometimes signifies that death may be coming in the next several days. Another sign that sometimes presents itself is seeing people who have already died. Some people think that the energy of our dead loved ones becomes available to ease the transition from this world. Although this will always remain a mystery, it is a common phenomena that occurs as people near death. We also encourage you to ask your physician or nurse how long they think your loved one has to live. This is not being morbid or thinking negatively. This makes good, practical sense so that everyone, including your loved one, can be prepared for the changes that are coming in all of your lives.
What is okay to talk about? Although it is hard to talk about death because it brings our fears out in the open, it can be very helpful to do so. Talking with your loved one about his/her death helps them not be isolated; they don’t have to face the task of dying alone; it can be a shared experience which is both strengthening and comforting. Many dying people worry about the family they leave behind. Talking about your plans for how you are going to deal with the changes that are going to occur can give your loved one a sense of security that you will be okay after his/her death. We even suggest that if you haven’t made funeral and burial plans yet, that you start thinking about it now. Getting this out of the way now can take a load off your mind. Not talking about death can be like the elephant in the middle of the room that everyone sees but no one acknowledges. If something is so powerful that we can’t even talk about it, then it has a lot of power over us. Paradoxically, talking about it can relieve everyone’s fears.
What should we be doing? Your loved one’s needs are changing, so what you do will need to change as well. It can be very burdensome for patients to try to keep doing things they used to do, yet they often do so because their family is urging them to do so. Instead, give your loved one permission to do whatever he chooses to do or not do. Respect these choices so that he doesn’t have to feel guilty for his/her weakness and changing interests. If your loved one still has energy and interest in the things going on, consider some of the following:
- Bring in photo albums. Review them with your loved one so you remember your lives together. This will probably cause tears and laughter. Don’t be afraid to experience both.
- Fill out a life review form (download forms under “Life Tribute” subpage of End of Life topic of this website). One form is for your loved one to complete on him/herself, with your assistance. Just ask the questions and get him/her talking while you jot down some of the responses. It’s not so much about completing the form; rather it’s about sharing the stories. The other form is for your loved one to complete on you or other family members; you can also complete it on your loved one. You may want to consider mailing Life Review forms to family members unable to be present. Afterward, consider coming together as a group and sharing what each has written. This can be a very powerful and meaningful time together. It is a time of recalling stories and sharing them with each other, a final gift that often creates tears, laughter, and cherished memories.
- You may want to consider helping your loved one write letters to others that can be given to them later. For example, if your loved one will miss your child’s graduation, wedding, etc., help him/her write a letter expressing their hopes; it’s a way they can be non-physically present that day. Give the letter to someone who can give it to the child on the occasion. Imagine the surprise on your grandchild’s face when Grandpa shows up for her wedding or the birth of her first baby!
- Provide special foods your loved one likes that might bring back memories.
- You might want to consider celebrating important birthdays, anniversaries, or holidays early this year. There’s no reason why Thanksgiving can’t be celebrated in July!
- Bring in pets to visit. As long as your pets are well controlled and you have proof that they are current with their shots, they may be welcome. Check with the nurse at your loved one’s facility.
- We encourage you to take pictures. You may think this is morbid since your loved one might not look well, but these are precious times, and later you may be grateful to have pictures that remind you of this special time together. If not, you can throw them away; this is a window of time and experience you can’t recoup.
- Play music that he/she enjoys. Music can soothe the soul. However, once your loved one starts losing consciousness, it is best to not play their favorite music because it makes letting go of the outside world more difficult; instead, play quiet soothing music.
- Take your loved one outside in a wheelchair, a Broda chair (a special lounge chair), or a motorized scooter. Many hospices have grounds that are beautiful and worth enjoying. Just feeling the breeze on your face can be a great joy after many days of being inside.
- Many families have estranged members. Usually, it can be helpful to contact these family members because people sometimes become more willing to forgive and be forgiven as death approaches. Opportunities for healing now exist. On the other hand, there are some relationships that are better left untouched. If you are unsure, ask a counselor to help you determine if contact might be helpful. Sometimes, a counselor can also intercede on your behalf – hearing something from a “professional” can help navigate troubled waters. If you think we can help with a difficult relationship, let us know.
Are there any issues surrounding the military that I should be concerned about?
Sometimes traumatic memories surface at the end of life. Your veteran might express regret about things he or she saw or did while serving in dangerous duty assignments. When this occurs, listen carefully and ask questions about what your loved one is feeling. Resist the urge to say things like, “You don’t need to feel guilty about that. It was a long time ago.” You may want to reference the book Peace at Last: Stories of Hope and Healing for Veterans and Their Families. It provides insight that can help you support your veteran through end-of-life experiences.
My loved one is getting weaker, what do we do now?
Your loved one’s needs are changing. It’s important to respect that and not try to keep forcing him/her back into old patterns. The goal is to help them let go of earthly attachments. This makes for a smoother transition and helps your loved one. It might be hard for you to do, but the following can help:
- As your loved one gets weaker, it’s harder to talk and answer questions. So, talk to your loved one, but try to avoid asking questions or making him respond. It consumes too much energy. It takes less energy to hear, so rest assured that even though your loved one can’t talk to you, he can still hear you and benefit from your words.
- Many people get restless as they die. Rather than getting quieter, they get “beside themselves.” They want to get up, they want to go back to bed. They aren’t satisfied with either. In these situations, it is often best to tell them they can’t get up. This takes the option off the playing field and will help him adjust to learning how to settle into the inactivity. Getting up and down not only doesn’t solve the problem, but it consumes what little energy they have.
- Keep your loved one’s mouth moist. Many of the medications, mouth breathing, and dehydration can cause dry mouth. There are special sprays that helps alleviate dry mouth. Ask your pharmacist for one and feel free to use it frequently with your loved one.
- Soothing words, music, calming medications, and the hand-heart connection can be very effective now. Soothing words include telling your loved one, “Relax. Let go. Open up.” Rather than playing their favorite music, play quiet soothing music. Seek TV channels that provide soothing images and music. The hand-heart connection is a non-verbal way of communication between you and your loved one. Place your hand firmly on his heart and just breathe deeply to induce calmness. This will help your loved one feel safe and secure. At the same time, you might hold your loved one’s hand over your heart. Sit quietly without speaking, focusing on the connection between you.
We feel so helpless. What can we do?
First, let yourself feel helpless; indeed, there are many things that are happening that you have no control over. Much of the task for everyone right now is learning to let go. However, there are seven things that you can do that can bring you and your loved one peace. All of us have done things that hurt each other; none of us are saints. Now is a time to reflect on people you may have hurt and consider asking for forgiveness. Think about those who have hurt you, as well as any hurts you may be holding onto. Consider letting them go, offering forgiveness. Think about whom in your circle of friends and family may benefit from an expression of your love. Think about those people who have impacted your life. Who might benefit from an expression of gratitude for having touched your life? The next thing is the hardest but probably the most important and that is to say goodbye: to all those you love and want to hold onto, to say goodbye to this world and everything in it; to say goodbye to all that’s been the same. Let yourself grieve. After you’ve done these five things, then your new job is to relax and let go of the world with your loved one in it and open up to a world without your loved one in it. Though it will be a vastly different world, you can learn how to find new and meaningful life. (See letter below from a woman who didn’t think this was possible!) Consider calling family members who are unable to come; hold the phone to your loved one’s ear so that they can say these things too.
I feel exhausted, yet I’m restless and can’t sleep. Is this normal?
Yes! These are common signs of grief. They may also be signs of self-neglect. Many caregivers put all their energy and attention into caring for their loved one at the expense of not taking caring of themselves. The resulting lack of energy is not helpful for you or your loved one. So, replenish yourself. Take some time to leave the bedside and take a few deep breaths. “But what if he dies while I’m gone?” This is often heard, and does occur sometime. We speculate that the reason this happens is because it is hard to let go of loved ones. If your loved one dies while you are away, go ahead and say what you want to say to him; in spirit, he will hear you.
This is a letter that a patient wrote to her friends and family. It can educate all of us on the needs of the dying.
- When you visit, just sit and be available to me. If I need something, I will let you know. Please don’t ask me questions unless absolutely necessary. I can’t summon the energy that an answer demands.
- Talk to each other. Family members are almost always present. They can catch you up on how I’m doing. They can answer most of your questions.
- Send me cards or letters. My family can read them to me when I feel up to it. They also provide a visual reminder of your love for me.
- Support my family. I’m at peace. Each day, I let go of more worldly cares and open up to God’s love and care and future for me. My family will struggles to let go of me. You will be helping me if you will provide them support. They will still need you after I die. So you can even help me later by supporting them and helping them support each other.
- Pray for me. I feel your prayers. They provide me with strength and comfort. Hold me close to your heart and know that physical presence may not be as important now as our heart connections.
- Thank you for caring for me. I feel your love. Take comfort in knowing I feel at peace inwardly. I know it’s painful to let me go. Rather than holding on to me, look to God to help you let me go.
Next we stopped at loneliness. It was difficult to see how I might get past this stop. It felt like I had been thrown off a mountain and I was left trying to crawl back up in total darkness – having only jagged edges to hold onto. I let myself feel all the deep emotions of loneliness and with time, I decided to get back on the little train.
The next stop surprised me with pleasantness. I started feeling the sun and its warmth. I saw blue sky and noticed the colors of flowers, birds, and leaves. They had been lost to me during my journey of grief. I reflected back on the other stops and realized that having let myself get off at each stop, I no longer felt lost any more.
But there was another stop. This was the stop of New Life…a new way to live in the world without my love in it. I really hadn’t thought it possible. If anyone would have told me I could now be so vitally alive without him, I never would have believed them. But my journey of grief had yielded many lessons. Lessons like: not to take life or people for granted, to give love freely and unconditionally, deciding to forgive, taking steps to heal anger, and living each day so it has worth and meaning.
So, Grief, I no longer fear you. I no longer feel I should hide you. You are my friend who leads me through my pain so I can make the necessary and healing stops along the way to that place where new life is possible.