When Words Fail
By Kathy Fogg Berry
1. Be a Faithful and Consistent Support.
Because dementia diseases, especially Alzheimer’s, can affect people for eight to twenty years, being a caregiver is a long-term commitment. Caregivers need people who can walk with them throughout the course of the disease, offering physical, emotional, and spiritual support. Sadly, though, caregivers are often forgotten. The old adage, “Out of sight . . . out of mind,” definitely seems to apply to this demographic. As the caregiver starts staying home with her loved one, she eventually slips off the radar of most churches. When this happens, she doesn’t get the compassionate care she so desperately needs.
As emphasized before, churches benefit from establishing a team approach to doing pastoral care. Teams who receive valuable dementia care training can be more alert to discovering people who may be in need of care in your church or community. To build trust and rapport, both people experiencing memory loss and their caregivers need faithful visitors. Some people on the team might coordinate taking care of tangible needs—repairs, yard work, shopping, rides to the doctor. Other volunteers can primarily care for emotional and spiritual needs, paying attention to both the person with dementia and the caregiver. Of course, these are big tasks. Rather than rely¬ing on one or two people to do everything, which can often lead to burnout, a team can minister interchangeably and flexibly.
2. Show Respect and Love for the Caregiver’s Loved One.
Caregivers carefully guard the dignity of the person they love. They need to see that you truly respect and want to honor the person they love, even if you make mistakes while trying to do it. Because people with dementia are often stigmatized, caregivers strive to protect the one they’re caring for from disrespect or public scrutiny. So, when a caregiver sees and feels meaningful interaction occur between her loved one and a visitor, she will likely respond with gratitude and appreciation, and encourage such interaction to continue.
When you visit, it is important to talk with the caregiver, offering them conversation and connection and checking in on their physical and emotional state. However, be sure you talk with the person who has dementia, too. Don’t just talk around her or over her to the caregiver only. Compassionate visitors who show love and respect to the person they’re caring for often help caregivers become more accepting of assistance and nurturing.
3. Recognize and Accept Caregivers’ Feelings and Emotions. Be Nonjudgmental and Confidential.
Caregivers need people who will allow them to voice their tragedies and triumphs, their stresses and blessings. As visitors listen with open hearts and open minds, caregivers feel validated and valued. Sometimes they need someone to listen as they reminisce about the ways things used to be and the daily losses they’re experiencing. Other times, caregivers need someone to hear how the act of serving and loving the person they are caring for is a blessing. They need sensitive, nonjudgmental visitors who can listen and then hold what’s said to them with the utmost respect and confidentiality. Caregivers don’t need or expect us to solve all of their problems, because we can’t. Rather than thinking about how we can solve their problems the whole time they are talking, we need to just listen, listen, listen.
4. Encourage Caregivers to Get a Second Opinion, If Needed.
Sometimes a doctor may not understand or see the scope of memory loss that a person and his caregivers are dealing with. If the caregivers or the person experiencing memory loss feel they are not being adequately heard, encourage them to seek a second opinion. Likewise, if their loved one receives a dementia diagnosis and caregivers simply can’t see it (whether because of denial, disbelief, or unanswered questions), encourage a second opinion for clarification.
5. Facilitate a Family Meeting With Adult Children.
Sometimes families experience difficulty talking, listening, and truly hearing one another when a loved one is experiencing decline due to dementia. It is not uncommon for one family member to shoulder most of the caregiving responsibility. This can cause frustration and resentment to build up toward other family members who nominally share in providing care. Some¬times out-of-town children are shocked when they return home after extended absences to find Mom or Dad significantly changed from the last time they visited. Although the in-town sibling may have been communicating the parent’s decline, seeing the changes in a person is often a rude awakening. Then, feelings of disbelief or unrealistic expectations of care from siblings can leave the day-to-day caregiver feeling wounded and overwhelmed. Sometimes families need a meeting, with all concerned people present, in a safe, neutral space with an objective listener.
To enhance communication, planning and responsibility sharing, the family minister could offer to facilitate a family discussion. Better understanding and cooperation may follow as people get on the same page. Sometimes people don’t see what they could be doing to help, or sometimes they don’t see the huge burden of care one sibling is bearing. Having a family meeting can be very insight¬ful and help bring reconciliation and cooperation.
6. Offer Holy Communion and a Short Worship Time.
As a caregiver begins staying home more and more with her loved one, she misses out on worshiping in her faith community with fellow parishioners, too. A minister or lay minister could offer Holy Communion and a brief worship time with the caregiver and her loved one. Sharing in this holy sacrament can be very meaningful for everyone as it meets important spiritual needs.
7. Go With Caregivers to Doctor Appointments and Be a Friendly Presence.
As he has progressed further into Alzheimer’s disease, Claude hates going to the doctor. Getting him dressed and ready to leave is a struggle of wills that leaves his wife, Sara, exhausted. Getting him to the car and successfully buckled in takes diplomacy and cunning, much less trying to get the car started and going before Claude tries to get out. Sara is used to doing everything for Claude herself, but she realizes she needs help. She calls their church.
Having a volunteer drive a caregiver and loved one to an appointment, drop them off at the door, park and then come and offer companionship in the waiting area can make a stressful outing much less so. As the volunteer builds a relationship with Claude, he’ll be able to offer valuable assistance just by being present. Sara can register and take care of business while Claude is companionably cared for. As Sara becomes more comfortable seeking and receiving help, she’ll feel less overwhelmed and alone. This may enable her to trust church visitors to walk with Claude and her in other areas of their journey, providing important emotional and spiritual support in addition to helping with basic needs.
8. Anticipate Caregivers’ Needs, and Look Beyond Their “Fines.”
How often do we greet someone with an offhanded, “How’re you doing?” Before they’ve answered, we’ve passed one another and keep walking as the person responds: “Fine. You?” It’s not that we don’t care; these kinds of greetings are just social habit. But what would it look like to really take time to hear, much less see, how the other person is doing?
People who are caring for loved ones with dementia diseases are often struggling under the weight of so many responsibilities. Yet rarely in our society do we simply admit to how we’re really feeling. This can be particularly true of caregivers, who may feel that other people don’t really want to know how they’re feeling or that even if they do, they can’t really help. They may believe that caregiving is their responsibility, and that they don’t need to burden anyone else with their problems. Meanwhile, they’re exhausted and sometimes overwhelmed.
How can we step into this space and offer support?
The first thing is to look beyond their “Fines” or pat answers when we inquire about their well-being. Taking time to observe a person’s posture, eyes, or voice can help you see and feel his fatigue. If you notice these things, a follow-up call offering support and care might encourage him to acknowledge some of the strain he’s feeling. If the caregiver is not open to a visit or assistance when you call, don’t give up. Try again another day. Send an encouraging card. Call when you’re at the grocery store one day and offer to pick up needed items. Take a casserole or some fresh flowers to their home. Be creative, looking for ways to gently offer encouragement or care to those who might be reluctant to ask for it.
9. Meet Tangible Needs.
Often a first response to a church member’s illness is providing a casserole. This is a vital ministry, but it is a beginning point. Again, dementia diseases are usually long term, and caregivers are often hesitant to ask for help. Potential visitors need to be proactive. While getting to know the family, find out their likes and dislikes, including allergies or favorite foods, activities that bring joy, and needs that might have fallen to the wayside. Be observant.
Perhaps you learn that the caregiver is an avid gardener, yet you’ve noticed that her flowerbeds are getting weedy. Show up one day with gloves on and gardening tools, ready to go to work. Rake leaves in the fall. Cut grass in the summer. Plant flowers in the spring.
Perhaps you notice the caregiver might need a ramp built onto her home to accommodate her loved one’s unsteady gait or difficulty climbing steps. Offer to build one, get lumber donated, and enlist volunteers. There are many such projects that can make a dramatic and tangible difference in the life of a caregiver and the person in her care; it simply takes observation and initiative on our part to step in and offer to do something about it.
10. Offer Respite.
After you’ve built up a trusting relationship with a person living with dementia, you might be able to offer some much-needed respite care. Perhaps the caregiver will feel free to join a friend for dinner, go to a movie, or attend on important social function while you stay at home with her loved one. It’s also possible that the caregiver may not feel comfortable leaving home. In that case, offer in-home respite. This could allow the caregiver to go into another room to read, nap, pursue a hobby, or do other things. She’ll be able to enjoy a break but will still be “on site” should her loved one need her immediate assistance.
11. Host a Dinner at Your Home.
Hosting a dinner at your home for a caregiver and his loved one with dementia can provide a good opportunity for them to enjoy others’ company in a non-threatening, nonjudgmental environment. Rather than inviting the extended family to attend, consider limiting it to just one or two other people. Keep things simple. The environ¬ment should be warm, inviting, and low-key. Prepare food and drink that you’ve learned are favorites. Think ahead about music you might play, walks you might take, topics you might talk about over dinner. Enjoy one another’s company as you do at any dinner party you host.
12. Be Available to Discuss Important Options and Support Individual Needs.
Caring for someone who has a dementia disease is physically, emotionally, and spiritually taxing. Over time the caregiver’s health may become compromised. As the needs of a caregiver’s loved one progress, her ability to care for him may become too challenging. Decisions may need to be made about whether it’s time for the family to find a place for their loved one in a memory support center.
As you’ve built up a relationship with the caregiver and her loved one, she might process some of these thoughts with you or need to process them with your church’s minister. Conversations with a caregiver going through this discernment process require diplomacy. Listening is the key, rather than telling her what to do or offering unsolicited advice.
If you’ve been visiting a caregiver over a period of time and have observed her fatigue or decline, it may be time for the minister or a trained counselor to visit and initiate a needed conversation. The caregiver may not raise concerns but might need to be encouraged to do so for her physical, emotional, and spiritual health. The minis¬ter can then gently guide the conversation.
Placing her loved one in a memory support center may be a time of great opportunity for the caregiver. As she begins to process the need for help, and as she actually begins receiving it, much-needed relief can follow as she feels less overwhelmed. The caregiver may also feel less burdened when she sees that her loved one is receiving good care in an environment dedicated to dementia care.
Considering an alternate living option for a loved one with dementia can be a very healthy step. While discussing the pros and cons with someone, you might encourage her to consider that surrounding her loved one with people who are trained and able to care for him on a daily basis in a safe and stimulating environment is a loving and viable option. It allows their relationship to move from caregiver back to spouse, daughter, son.
Today, many specialized living opportunities exist for those with dementia, ranging from memory care units that are part of larger continuing care retirement communities to smaller assisted living facilities focused on dementia care. Because there are growing options in many communities, it is often possible to compare and choose while making this very important decision. Resources listed at the back of this book are available to help evaluate these options.
Reputable organizations are happy to meet with caregivers, loved ones, and the potential resident. As you’ve built a relationship with the family, they may ask you to visit some facilities with them. If this is the case, when you tour such facilities, encourage the family to note the condition of the buildings and grounds. Notice how care providers interact with residents. Do they make eye contact with the loved one? Do they convey a sense of caring?
Encourage the caregiver to ask questions of various people and the facilities. Some questions to consider include:
1. Is the organization’s accreditation and inspection current? (Ask to see licenses.)
2. How are the organization’s finances?
3. What are the qualifications of key personnel such as the Executive Director, the Chief Financial Officer, and the Director of Nursing? How long have they worked for this organization?
4. What are the ratios of direct care staff to residents? (Compare the answer to required levels in your state and other organizations.)
5. Do residents receive person-centered care that prioritizes the preferences and needs of each person? If so, how do they achieve this?
6. What is the level of regular planned activity? (Ask to see an activities calendar and facility newsletter.)
7. Is there a spiritual emphasis at the facility—chaplains, worship services, and faith-based programming?
Encourage caregivers to begin the process of reviewing options long before they feel a decision must be made. This avoids having to make a quick decision during a time of crisis, giving them time to reach a high degree of comfort with the decision. You can also suggest that they reach out to other caregivers during this evaluation and transition process. A formal or informal support group of caregivers in your church could help provide support, education, and camaraderie during this challenging discernment time. Hearing the stories of others who are successfully walking the caregiving path is a great resource for caregivers.
Ministers and church leaders play an important role in help¬ing caregivers—listening, counseling, supporting, and connecting. Take time to learn about senior adult care facilities in your community so that when caregivers are ready to discuss options, you can provide reliable information. Continuing care retirement communities—communities that offer independent living, assisted living, and skilled nursing care—usually offer memory support units, areas dedicated to the care of people living with dementia diseases. There are also independent assisted living facilities with memory support units. Some people may need skilled nursing care settings.
Most importantly, be nonjudgmental at this time. Each caregiver needs to decide what is best for him or her. She may not handle things the way you would if you were the caregiver, and that’s fine. Perhaps she’s ready to begin going back out with friends or traveling. Perhaps she’s ready not to be the sole caregiver shouldering responsibility. Alternatively, she may feel she’s the only one who should do it and push herself to continue. We need to be supportive of these personal decisions—while still watching, though, for health concerns that necessitate considering alternatives before a crisis occurs.
13. Help With Relocating a Loved One, When or If Needed.
If the time comes for a caregiver to move his loved one to a facility that offers memory support, be there to provide emotional and spiritual support, but also assistance with the logistics of the actual physical move. Have people in place to help as needed. This is another area where research can be helpful. In our community there are several companies that focus solely on helping seniors move. Their specialized sensibility and experience removes a great deal of stress. There is probably such a business in your area as well. Look into it and be prepared with this information ahead of time to offer to caregivers as they begin to think about a potential move for their loved one.
Finally, you cannot be all things for all people. When ministering to caregivers of people with dementia, know what you can and can’t do. This is why a team approach is so valuable, as different members can meet different needs and provide care in various areas. This is also where research will come in handy, as you familiarize yourself with resources to which you can refer others. Strive for balance in this area, trusting that God will use you to minister to caregivers in the ways they need most.
Excerpted from When Words Fail by Kathy Fogg Berry. Published by Kregel Ministry, an imprint of Kregel Publications. Copyright 2018. Used by permission.