Talking with your loved ones about end of life
Rites and rituals for the end of llfe
Grieving the loss
Saying Kaddish (personal story)
Confessions of a Recovering Caregiver (personal story)
NOTE: This chapter should be read only by those who are ready to explore issues related to death.
Most families affected by ALS will have a long time to prepare for the end of the journey. No one knows just how long a person with ALS will survive after diagnosis — in some cases it’s only a year or so; in other cases, it’s decades. But as the person grows extremely weak, breathing becomes more difficult and quality of life declines, the reality grows closer.
Before the last stages of the loved one’s life, families should have created a list of all checking, savings, investment and other accounts, storage facilities and other properties, wills, legacies and other legal documents. Wills, arrangements for child custody, living wills and powers of attorney should have been taken care of (see Chapter 7). Taking care of these earlier will be easier than waiting until death seems imminent.
Review these documents a few times a year to be sure they’re current and your loved one’s wishes haven’t changed. Also create a list of the people who should be contacted when the person passes. Hospice staff or social workers can check into state laws or local regulations that may affect your plans.
“What your dad most wants to hear from you and the others who love him, is that:
“I am appreciating the ‘long goodbye’ this disease is giving me ... It sure is giving me time to ease the minds of my loved ones, some of them anyway. We’re all learning that dying is a natural part of life. Having been through a few instant ‘no goodbyes’ I’d say this is better.”
“I did something that, surprisingly, has brought me great comfort. I actually reserved a cemetery plot in an exceedingly beautiful cemetery. It truly looks more like a park than a cemetery and I actually feel so happy to know that where I’ll eventually end up is such an incredibly beautiful place! Next I’ll pick out a marker and have it decorated just as I like with just the right words on it. To me this is not morbid — good planning is a powerful coping tool!”
Chapter 7 describes the plans to be made and documents to be created regarding medical intervention in times of crisis. The living will should advise doctors that your loved one maintains the right to refuse or withdraw treatment, including mechanical ventilation.
If ventilation is withdrawn, doctors should provide access to adequate pain medications (including morphine) and anti-anxiety drugs. When the day arrives, the person can experience the last moments in some comfort, with the dearest loved ones nearby.
There are other questions to think about in advance. Focus on these as they come up naturally in conversation, or initiate a discussion when the time seems right. Remind the loved one that everyone needs to make end-of-life arrangements well in advance and that you want to be sure you know what he or she wants.
Select a mortuary in advance. Some people with ALS want to be involved in planning their funerals, cremations or burials. Bring this up when the person is speaking about dying, or take note of any mention made in conversation. Some people find a sense of peace and control in choosing a burial plot and headstone, or specifying details of a memorial service; others are happy to leave that to the loved one. Plans can be paid for ahead of time.
The person with ALS may want to designate clothes for the burial, a list of possessions to give to others, music or readings for the service. Be sure to have biographical details for the newspaper obituary, such as date and place of birth; names and cities of children; primary job titles; major achievements and activities; and where to send memorial donations.
Advance planning will ease the burden on the caregiver at a difficult time. It also can help minimize conflicts with family members. The loved one even can sign a document describing the chosen final arrangements, and there will be less disagreement over what he or she would have wanted.
Keep in mind that funerals or memorial services exist to help the living as they mourn; be sensitive to the needs of close family members at the time of death.
When making final plans, it might be wise to make arrangements for the caregiver as well. In the event of an unexpected tragedy, the spouse with ALS won’t have to deal with those details.
Some people have last wishes. Friends, family or organizations may be able to help arrange for a trip, dinner at a favorite restaurant, a stroll through a favorite park, a concert, a special visitor. Some last wishes, such as taking an airplane ride or meeting a favorite sports team, should be done while the person is still strong enough to get around without danger.
Remember that no one can say for sure when your loved one will pass away. Their remaining time may be more or less than the doctor predicts.
With all of the practical arrangements in place, you can spend your last days or months together in quiet intimacy. Be loving and gentle, say anything that needs to be said, help each other accept the inevitable.
Final Journeys: A Practical Guide for Bringing Care and Comfort at the End of Life, by Maggie Callanan, Random House, 2009
Living Fully in the Shadow of Death: Assurance and Guidance to Finish Well, by Susan Zonnebelt-Smeenge and Robert C. DeVries, Baker Books, 2004
Never Too Young to Know: Death in Children’s Lives, by Phyllis Rolfe Silverman, Oxford University Press, 1999
Final Gifts: Understanding the Special Awareness, Needs and Communications of the Dying, by Maggie Callanan & Patricia Kelley, Bantam Books, 1997
Twilight Wish Foundation, (877) 893-9474. Grants wishes and plans special group celebrations for people 68 or over with low income. Active in several states.
Memorial services can be traditional and follow the pattern common to the family’s religious community, or they can be individual. One person created a DVD with photos, music and favorite quotes to play at the memorial service. Others include special pets, favorite flowers or pictures, candlelight rituals or comments from key people in the loved one’s life. One man set aside money for a party at his home with his favorite foods to be enjoyed by all those he cared about.
See resources below for books and websites that suggest memorial rituals that may be particularly meaningful to a family. A ceremony in nature, using water, pebbles, flowers or leaves, may help emphasize the natural cycle of life. The choices are infinite. Look for what has special meaning to you and your loved one.
A memorial gift to the church or community or donating plants to a favorite garden in his or her name can be a fine tribute that helps in the grief process while honoring the person. Carrying out a pet project that had meaning to your loved one with ALS may help to ease the pain of the next months.
Ask people to contribute their thoughts on a website over several weeks. These later could be gathered into a book for close friends and family.
These events not only honor the loved one; they help everyone experience grief and appreciate the ongoing nature of life. They can be especially helpful for children and bring everyone to a more meaningful understanding of the person’s life.
Crossing the Bridge: Creating Ceremonies for Grieving and Healing from Life’s Losses, by Sydney Barbara Metrick, Apocryphile Press, 2006
The Memorial Rituals Book for Healing and Hope, ed. by Ann Marie Putter, Baywood, 1997
“When [my husband] died I did a DVD photo/music tribute for the memorial service, and many/most of the photos are from after he got ALS.”
“On a very special loving evening, he told me what kind of memorial service he wanted, that he hoped friends could come to the house, rather than a funeral home, to pay their respects. He even told me what kind of music to play at the service. I will never listen to that piece again without thinking of him.”
“I thank God every day for the memories of the tiniest caring rituals and love for my husband in the seven years of his journey. So many memories of tweaking his toes, rubbing his leg, combing his hair. Each is a gift life gave me with my most precious husband. Those memories of the care and love help me now that I have to live without him. He is always with me, though.”
“Recently I’ve had two occasions where I could have sworn I heard his bed noise when we would turn him. The noise the mattress would make. The bed is not here anymore but I swear I heard the noise. I sat up straight and held on to that moment.”
“I did feel relief. Relief that my wife was whole again. Relief from the oppressive burden of the constant care she required. Relief from the daily uncertainty about how much longer she would live. For me, the relief was like a release. Releasing me to begin my healing.”
“This will be my first Christmas Eve without him. I planned to be alone, put a little of his aftershave on my pillow and cry all night! Well, you know what they say about best laid plans. My 6-year-old grandson has changed that. He will be here and has planned our evening. We will go to church and thank God that we had Papa as long as we did, and he will spend the night in my bed and we will wear Papa’s PJs. I have decided that he is right: We shall celebrate and enjoy all our memories.”
“Get out and do things before you feel like it. I promise, the motivation to do things will return much sooner if you will go ahead and do them. Get in motion … the emotion will follow along naturally. Maybe not as soon as you would like, but it will get there.”
Those who’ve made the ALS journey as caregivers have much experience with grief (see Chapter 6). There’s grief from the time of diagnosis until long after the death. Grieving a major loss lasts a lifetime; most people say they simply get better at coping with it.
See resources below for books and other materials on the stages of grief: denial, anger, bargaining, depression and acceptance. Another view of the stages is: numbing, yearning or searching, disorganization or despair, and reorganization.
Separation by death produces behaviors and emotions indicating that a strong attachment has been broken, including disturbed sleep, forgetfulness, angry outbursts, social withdrawal, feelings of helplessness and dependence, lack of motivation, low selfesteem or anxiety about one’s own mortality. There may be physical sensations of grief such as headaches, oversensitivity to light, fatigue, abdominal pain, reluctance to eat, breathing difficulties. Pre-existing conditions may be worsened as immune defenses are lowered. Longtime caregivers often feel at loose ends, not sure who they are or what to do with their time, now that the all-consuming caregiver role is over.
If these feelings and sensations don’t arise, that’s normal too. Anticipatory grief — knowing the loved one is dying and grieving during a series of losses — may reduce the intensity and duration of grief after the death. Feelings of relief also are normal, despite the sadness of loss.
Whatever your emotions or thoughts, allow yourself to feel them and to express your bereavement in your own way. The pain will ease, though not quickly. Watch for signs of unresolved depression or anger and get the help you need.
Friends and relatives may visit and call often at first but become scarce a few days or weeks after the funeral. Call them and tell them you need to talk or to go for a walk together. People never feel adequate in putting their sympathy into words, but that doesn’t mean it’s insincere. Every gesture of sympathy is a showing of love, so try to receive it that way.
Remember that everyone grieves differently, including each member of the family. Respect each other’s processes, and be kind and gentle. Talk with each other about your feelings and listen; don’t judge or compare.
Some people hold onto a special talisman of the departed one. A woman kept the headrest from her husband’s wheelchair; another slept on the sheets from her partner’s deathbed — the last thing he touched on earth. These comfort symbols may carry the person’s scent, which is the last strong evidence of physical presence. Holding onto such items is normal, and can be continued for weeks and months if needed. They may bring both comfort and sadness; that’s the nature of grief.
There’s no rush to removing the loved one’s belongings or clothing or to rearrange the household that’s been set up for him. The caregiver and family can do this whenever they’re ready.
The grieving process isn’t a smooth road. Just when it seems you’re moving along, something — a familiar song, a person who looks like your loved one, someone else’s illness — may bring up the feelings of loss again. There’s no set time for grieving — it takes as long as it takes. Anniversaries of birthdays, weddings, the date of diagnosis, and the death itself can intensify or reawaken the feelings of grief. Acknowledge the experience and the emotions, and let yourself seek support.
Take comfort in knowing that the pain is over for the person you loved. Many caregivers imagine their loved ones released from their broken bodies, whole, healthy and happy again.
Also take pride in knowing that you did the best you could, and loved the best you could. If you feel a sense of relief that the hard work of caregiving is over, don’t feel guilty. It’s been a hard job, and you’ve earned a rest. Caregivers often know that their loved ones would want them to be happy and to enjoy the relief from the tasks they’ve performed for so many months or years. Extra care and attention are appropriate right now; it’s OK to treat yourself to a massage or manicure, or to go on a trip, or laugh or dance. When you’re ready, you deserve to experience the joys of life.
Take care of yourself physically during the weeks and months after the loss. Your immune system will be weakened by the stress of grief, so rest, nutrition and exercise are especially important. Your health can be affected by caregiver stress up to three years after the caregiving burden ends.
Beware of excessively numbing pain with medications, alcohol, television or activity. The grief won’t go away, and these escapes can lead to new problems. Professional counseling can help you face the feelings you’re avoiding.
Contact MDA for other materials and sources of support.
Support groups and bereavement groups can be especially helpful now. The friends you make through ALS support groups will understand better than anyone what your journey has been and what the loss means. Bereavement groups are offered by hospitals, churches and other facilities. There also are virtual online groups such as griefnet.org. These groups can remind you that your feelings are normal and you’re not alone.
When you’re ready, consider donating some equipment (such as wheelchairs, communication devices or hospital beds) to your local MDA equipment program, to be shared with other families living with MDA. Think about staying involved with the MDA ALS support group — your experience and perspective can be a tremendous gift to other families. You even might choose to provide respite care, get involved in raising public awareness about ALS or caregiver needs, or volunteer at a hospice or hospital.
As your life goes on, you’ll incorporate your loved one’s memory into your new experiences. On family occasions and holidays, be sure to include thoughts or mentions of the one who’s gone.
Your loved one with ALS will continue to live in your memories and in your heart.
Following Sam: Fond Farewell, MDA/ALS Newsmagazine, February 2008
Coping with Grief: Strategies for People Living with ALS, ALS Society of Canada
On Grief and Grieving, by Elisabeth Kübler Ross and David A. Kessler, Scribner, 2005
Parting: A Handbook for Spiritual Care Near the End of Life, by Jennifer Sutton Holder, University of North Carolina Press, 2004
When Bad Things Happen to Good People, by Harold S. Kushner, Random House, 2004
Coping with Grief: Strategies for People Living with MND, Motor Neuron Disease Association of Victoria (Australia), 2003
Tuesdays with Morrie, by Mitch Albom, Random House, 2002
Elisabeth Kübler-Ross Foundation. Organization created to further the work and teachings of Elisabeth Kubler-Ross, particularly her work on behalf of improving end-of-life care.
Resources for children:
Back issues of MDA publications Quest and MDA/ALS Newsmagazine can be found online.
Tear Soup, by Pat Schweibert and others, Grief Watch, 2005
The Gift of a Memory: A Keepsake to Commemorate the Loss of a Loved One, by Marianne Richmond, Marianne Richmond Studios, 2001
Guiding Your Child Through Grief, by James P. Emswiler and Mary Ann Emswiler, Bantam, 2000
The Fall of Freddie the Leaf, by Leo Buscaglia, 20th anniversary edition, Slack, 1982
The Dougy Center for Grieving Children and Families
KidsAid.com, produced by GriefNet
Hospice Net. Multiple resources on helping children understand and cope with death.