elderly woman and caregiver

It is a hard day to face: the day a loved one is diagnosed with a debilitating or terminal illness. Words can’t do justice to the wide array of feelings we experience as we digest the news and begin to help our loved one through this difficult time. We cycle through grief, anger, sorrow, regret, helplessness—sometimes rotating through these feelings over and over. And in the midst of it all, we still experience joy, love and hope.

Every individual and family faces the diagnosis, and its challenges, differently. Some families, such as Elaine’s, turn to faith and prayer, clinging to each other and growing stronger despite the difficulties. Others grow apart, separated by their own individual grieving.

This is the time for families to make decisions and plan for what lies ahead. What care and support will your loved one need in the coming months or years? If you have the chance, while your loved one still can, they need to make a care plan for their future. Who will oversee their care? What about their finances? What are their final wishes?

Often, in their hope for a cure, families choose to focus only on helping their loved one to get better—afraid to face the fact that their worst fears may come true. A positive, hopeful attitude is invaluable at this point, but families must also face reality. It’s hard to talk about a loved one’s wishes for end-of-life care or funeral arrangements, yet doing so makes it easier for grieving family members to make hard decisions. When those decisions have been made ahead of time, families are reassured that they are doing the right thing, carrying out a loved one’s final wishes.

Make a plan for finances, for the household budget and the medical expenses. Organize important documents, accounts and passwords. Finalize a will. Is there a family member who has access to all accounts and monthly bills? Who will make all the financial or medical decisions? Have your loved one authorize Power of Attorney to a trusted family member, so medical and financial decisions can be made by someone other than the patient.

man-helping-wife-family-caregiver-[669x469]If the role of caregiving falls on your shoulders, involve family members and close friends as much as possible. And do all you can to keep them involved. For example, assign someone to come over at a certain time every Sunday, so you can have a break. Too often caregivers take on most of the responsibility alone. If family members or friends aren’t available to provide a break, caregivers can turn to a home care provider to send in some help while they take time off. Loving, kind help comes in many forms.

The “MDA ALS Caregivers Guide” is a valuable resource for family caregivers. It is written mainly to educate family members who are caring for a loved one who has ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s disease), but it contains important advice and support that applies to any family caregiver in any situation. The guide outlines all facets of caregiving and the many issues that need to be addressed.

It advises, “Caregivers may feel guilty for resenting what they have to do; for wanting a break from caregiving; even for wishing the loved one would go ahead and die so this will be over. Family and friends can experience survivor guilt for being able to eat a steak or run across the lawn when their loved one no longer can.” It is not an easy experience for anyone involved—but family caregivers can often feel overwhelmed.

In Elaine’s experience, she handled her husband’s care mostly on her own, but she knew she could rely on family members and close friends whenever she needed. When her husband was in the hospital, she often had her daughters or son spend an afternoon or evening watching over him while she ran home to shower and have a little time to herself. Sometimes that’s all it takes for a caregiver to feel rejuvenated and ready to face the next day.

The “MDA ALS Caregiver’s Guide” suggests, “Make a list of people who say, ‘Let me know if there is anything I can do to help.’” And then take them up on it! Often family and friends will be glad to know they can be of some help, even if it is a seemingly small thing like bringing over a casserole or meeting you at your favorite restaurant for lunch, so you can get out of the house.

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Some family members or friends may struggle, not knowing what to say or do. They may be reluctant, not wanting to upset you or your loved one. Often, people just don’t say anything, for fear of saying the wrong thing. Sometimes you, the caregiver, need to take the initiative and bring up the subject. Explain the situation, be upfront and honest, and let people know how they can help.

Daphne Simpkins cared for her terminally ill father for three years. In her candid, straight-forward voice, she explains, “Beside a chronic patient is a barely alive, almost-invisible caregiver. Speak to him. To her. Speak these words slowly: ‘How are you?’ If she replies, ‘fine,’ smile reassuringly. Send fresh fruit to her house anyway. Or maybe a fresh flower. Drop off fresh milk. Fresh bread. Her life is mostly stale, and she can’t easily drive to a store for fresh stuff. You get the idea.”

Being a family caregiver is not an easy job. Caregivers may struggle with their own health problems, stress or depression. Studies show that family caregivers become chronically ill more often than others. When you spend every day taking care of a loved one, it can be hard to remember to take care of yourself. But it is crucial, NOT selfish, for caregivers to take time to care for themselves FIRST.

Caregiving can be a difficult experience, but it can also be rewarding and uplifting. Being a caregiver can be a life-changing, positive experience that brings you closer to your loved one. Elaine’s experience was this way. She felt grateful that she could help her husband through his illness. It wasn’t easy, but after he died, she felt at peace, knowing that he had received the best loving care possible and his final wishes were fulfilled.

husband-with-wife-at-hospital-[400x600]The day a loved one is diagnosed with a debilitating or terminal illness is a day that none of us hopes to face. Yet, for many families it becomes a reality. You may not be able to change the diagnosis, and may have difficult times ahead, but for the sake of your loved one, you can be stronger than you ever thought you could be.

Jo-Ann Goldstein cared for her husband who had ALS. She concludes, “My message to everyone is that we can change—we can do what we need to do when crises arise. To answer the question that I hear most often—’How do you do it?’—I say it’s done out of love, that it’s my turn to be the caregiver. We don’t know what life has in store for us, but we can learn to handle situations with the help of family, friends, and the many wonderful charitable organizations. We don’t have to deny the anger, exhaustion, fear and all the other feelings that we all feel—but we can deal with them, get beyond them, and not be all-consumed.”