Lisa Askey and Althea Scott
Every day she drove to her childhood home to check on her mom and aunt. She helped them clean and shop. She took them to numerous doctor visits and for medical tests. Paying the bills and dealing with medical claims fell to her.
Lately, she had noticed that both her mom and aunt were declining physically and mentally. But they wanted to stay in their home, and they assured her they could help each other cope day to day. Then came the day she arrived to find one of the stove burners on, the coffee pot boiled dry, and a tea towel dangerously close to the flame. Neither woman remembered turning the stove on. As she looked around, she thought, “It’s 5 p.m. They are still in their bathrobes and their morning pills are in the containers. What do I do?”
This particular scenario is real. Haven’t we all heard similar (or worse) stories? What should this daughter do? While there is no perfect plan for working through this life challenge, and solutions are as individual as the people involved, helping our aging relatives navigate their golden years is an act of kindness and compassion. The authors learned during their own caregiving journeys that specific and practical advice is a blessing, and so we will share what we learned.
We both found ourselves in the “sandwich generation” situation: raising families and taking care of aging parents at the same time—while working outside of the home and serving the church. For Lisa, it began by caring for both of her parents, who lived two hours away. Every Saturday for months (and sometimes during the week) she went to pay bills, fill weekly medicine containers, pay the agency that provided full-time aides, do laundry, shop for food, clean the house, and drive one or both of her parents to doctors’ appointments.
When her mother was failing, Lisa found her a place in a nearby medical facility, and her father came to live with her and her family. Then after the death of her mother, Lisa helped her father pack up and sell his house and move into a nearby continuing care facility.
Lisa quickly learned that, at her father’s facility, she needed to go to specific people for answers to her questions about various charges, doctors, transportation, and physical and occupational therapy on site. Getting to know the social worker, chaplain, and head nurse was helpful as well.
Because Lisa’s father wanted to remain in his independent apartment as he became weak, Lisa moved to part time in her job as a school librarian, hired part-time and nighttime aides, transported her father to dialysis (or paid for transportation) and was his daytime aide as well. Lisa’s husband and children held down the fort at home and sacrificially helped as needed.
Althea’s mother came on short notice “just for a while” to recover after surgery, but ended up living with the Scotts until her death six years later. During that time, her father moved in for his final months. Many time, space, and financial adjustments needed to be made. Although Althea is a nurse, it was tough to add a 24/7 job to family life. Involvement with children’s activities became difficult. Meal prep became more complicated. Oversight of her parents’ finances became her job. Their house was already full, but they reassigned bedrooms. Bathroom time was at a premium. Althea left her part-time job. The whole family had to make adjustments. Each family member served both the care-needer and the caregiver according to his or her ability and skill. The children kept Grandma company, prepared her meals, and gave personal care. Althea’s husband was an advocate for his mother-in-law, and he took Althea for many walks to let off steam. God graciously sustained them during these difficult years, often providing creative solutions to specific challenges through her parents themselves, her brothers, and their church family and friends.
In the story at the beginning of this article, the caregiver was a daughter like us. In fact, 75 percent of caregivers are women, 85 percent care for a relative or loved one, and 70 percent are between the ages of 50 and 64. The average caregiver lives 20 minutes away and gives care 24.4 hours per week, while 25 percent of those caregivers provide 41 or more hours of care per week. Thirty-five percent of caregivers provide help in their own home, and 48 percent in the home of the recipient. The average duration of providing care is four years. (Source: www.caregiver.org/caregiver-statistics-demographics.)
First, PRAY. This can be a highly stressful time, and the whole family needs to be close to the Lord throughout the whole journey.
Second, TALK. There should be ongoing conversations among the parents, the caregiving child, her siblings, and her children throughout this journey. While it is true that death is a powerful enemy, that the process of decline is a huge unknown with new difficulties arising often, and that some families find it very hard to talk about end-of-life issues, we Christians have the rock-solid assurance of being present with the Lord after our bodies stop working. To have someone who loves us walk with us through the process is a gift both to be received and to be given.
Be proactive. Put your house in order while you are healthy. Before Moses died, God gave him directives regarding the leadership and the future for the people of Israel. Moses obeyed God and put the house of Israel in order before he died (Deut. 31:14ff.).
We strongly suggest you finalize your legal matters. Have a will, a financial power of attorney, and an advanced directive and medical power of attorney made or update your previous ones, and make sure all financial accounts have up-to-date beneficiaries (IRAs, pensions, life insurance, annuities). We also suggest you set up a joint checking account with your caregiver and have a cell phone to use in emergencies.
It’s best if you start the conversation about how your assets are to be distributed and how and where you envision being cared for in your declining years. While these matters are your decision, telling your children ahead of time may ease their grieving process and may lessen family discord after your death. Assets also include special personal possessions, so make a list or an album of pictures to indicate who is to get what. Also, one child needs to be in charge of your care, handle your important documents, and help you communicate with other family members.
The child doing the caregiving filters communications from medical people and financial companies, and then makes appropriate decisions. We suggest that you send letters to all relevant people, stating that your caregiver has your permission to discuss you, your benefits, and your assets. This answers all HIPPA laws and other privacy issues.
Explain your medical insurance and prescription plan to your caregiver. A list of all your medicines, doctors, pharmacy, insurance information, and emergency contacts, along with a brief medical history, significant health conditions, and special needs should be in a prominent location in your house and in your purse or wallet. This is extremely helpful to ambulance and emergency room personnel.
When your children or a wise friend tells you that your health is impairing your driving, graciously give up your driver’s license. If they suggest that repairing the roof should be left to others now, be gracious about that as well.
Regarding your final arrangements, investigate pre-need funeral and cemetery planning. (You might save some money.) Ask your pastor what planning can be done for your funeral or memorial service beforehand and make a list of suggested hymns and Scripture. You might consider writing a very brief autobiography to be submitted to the funeral director for an obituary and to the pastor for the funeral service bulletin.
Our parents nurtured and protected us as we were growing up; now it is our turn to care for and advocate for them. Remind your parents that God wants you to honor them in their declining years. It is important that your parents know that you are not trying to take away their independence, but want to be their backup. If your parents have not developed a plan for the future as they become debilitated, encourage them to do so. Be sure everyone understands the plan: it is essential that everyone be on the same page! This is especially important if parents are moving into the home of the caregiver. At some point, you may have to be the parent to your parents—taking away the car, selling their house, and disposing of their nonessential belongings.
This is the time to specifically and soulfully review your relationship with your parent and straighten out resentments against them. Put aside grievances and vestiges of teenage conflict. Instead, focus on helping as the Lord would and giving a cup of cold water (and a whole lot more) in the Lord’s name to your parent.
Be an advocate for your parent. Take notes on what was said in each meeting or phone call, and ask questions for your parent. If you are unsure what questions to ask doctors, lawyers, and insurance companies, be sure to ask others who know about these matters.
Spend time learning about your parent’s health issues. Learn the terminology and the possible treatments, their side effects, and the prognosis. Will the disease process cause personality or psychological changes? Understand that your parent may become physically dependent on some prescribed pain medications, but this does not make them an addict. Diabetics and those with thyroid disease are physically dependent on their drugs to survive, but no one thinks of that as an addiction.
Being a caregiver causes great stress, so take care of yourself. Formulate a schedule, so that some vestiges of your previous life can continue. Take the time to exercise, to listen to Christian music, radio, and podcasts, as well as sermons from your church, and continue to meet with God’s people in worship services and other activities. Ask selected people to be your prayer warriors, and ask friends of your parent or yourself to come and give you a break.
If your parent comes to live in your house, be willing to get help, such as in-home care, a companion, or time in an elder day care. Arrange needed physical therapy and/or occupational therapy, either through Medicare or secondary insurance. Ask your parent’s pastor to visit regularly. Ask your parent’s elder to bring the Lord’s Supper frequently.
If your siblings live nearby, ask them to help in ways that make use of their strengths. There are many tasks that can be shared—scheduling appointments and tests, paying bills, providing meals for the hands-on family, and packing up your parents’ house and belongings. If your siblings do not live nearby, remember to tell them funny quips, old stories, and family secrets shared by the parent.
Do all you can to resolve differences from the past that may have been swept under rug. The caregiver’s primary focus is to take care of your parent. Don’t allow past differences to temper your relationship with your parent or caregiving sibling.
Siblings who live at a distance may not understand the extent of the caregiver’s time commitment and stress. Caregiving is not like raising a child who progresses toward independence. There will be ups and downs for a while, but caring for an aging parent gets harder with time. Communicate regularly and be encouraging to your caregiving sibling. Visit frequently and give her a break—a day, weekend, or week—but remember to leave essential decisions to the on-site caregiving child.
The caregiver can become a virtual shut-in. She needs prayer and encouragement through emails and cards. Volunteer to accompany her to meet her parent. Offer to be an elder-sitter so she can go to church or out for an hour alone or to an event that her child is in. When Althea took part in caring for Lisa’s father, a loving bond developed between the ladies.
Arrange meals for the caregiver and her family when her parent is in a particularly difficult time or when dying. When her parent dies, draw the caregiver back into the life of the church.
Read Scripture to your parent, and sing and/or listen to hymns and Scripture songs. Learn what makes your parent comfortable, such as certain food, slippers, or a blanket. Communicate with your parent’s pastor and your siblings and encourage the grandchildren to call or Skype with their grandparent.
Both Lisa and Althea found palliative and hospice experts helpful, supportive, and caring. We strongly suggest you get involved with hospice sooner rather than later, because what hospice provides is important long before the last week of life.
The glorious hope we have in Jesus is that though your parent is now absent from the body, he or she is present with the Lord. Pray that the Lord will give you hope and courage. Take time to grieve.
Find all the legal documents, contact the siblings, lawyer, funeral director and cemetery, and pastor, and organize the funeral or memorial service. Your lawyer will help probate the will in the county courthouse. We recommend that you get more than the usual five copies of the death certificate for various legalities that will occur later. If you are the executor, you must distribute the inheritance and special gifts.
We hope and pray that the advice we offer above will be helpful to you as a caregiver. To obtain more extensive information, contact Lisa Askey at firstname.lastname@example.org, and she will send it to you as PDF email attachments.
The authors are members of Trinity OPC in Hatboro, Pa. New Horizons, June 2017.