The Caregiver Connection Newsletter is a free publication of the Baltimore County Department of Aging (BCDA).
July, August and September 2022
Stories in This Issue:
- Fighting Caregiver Fatigue
- Building A Care Team
- Taking A Break With Restorative Respite
- Introduction of OPAL Senior Center
- Assistive Technology Highlight
Calvin’s day begins before 5 a.m. He knows another exhausting day lies ahead. He allows himself only enough time to have a cup of coffee and read the paper before lying back down by his wife’s side until 6 a.m. when the daily routine begins again; toileting, showering, dressing, wheelchair transfers, laundry, meal preparation, housekeeping, correspondence, paperwork, yard work and personal care. Soon its time for a doctor appointment and more wheelchair transfers, a trip to the pharmacy, grocery shopping and then, finally, a return home to continue the care routine.
No time to rest during the day. Bedtime planning takes an hour so he begins by 9 p.m. Calvin is physically and emotionally exhausted by 10 p.m. and falls asleep quickly. But he is awakened and out of bed at least three times during the night, tending to his wife’s needs, taking her to the toilet or changing wet sheets. He attempts to return to bed and finds he cannot fall asleep. His mind is active, he feels anxious and has relentless thoughts that swirl in his mind. Daybreak seems to come too quickly and the schedule begins once again.
Caregiving consumes 24 hours of the day and sleep deprivation and fatigue are the common denominators.
Caregiver fatigue cannot be understated. According to Webster’s dictionary, fatigue means “physical or mental exhaustion; weariness.” Spouses, adult children and family members alike are susceptible to caregiver fatigue whether they are providing care 24 hours a day or caregiving from a distance. The sandwich generation faces particular challenges as they attempt to provide care to elderly parents while juggling the demands of young families and full-time careers. Whether caregivers are losing actual sleep or simply wearing down from the constant worry and obligations, help is needed before feelings of resentment and guilt set in or the caregivers’ health is compromised.
Sleep is absolutely necessary to live; however, it is often a low priority in the whole caregiver scenario. As an adult, our bodies need six to nine hours of sleep and after age 65, we need six to eight hours per night. The American Association of Retired Persons (AARP) likens the need for caregivers to take care of themselves to performing regular maintenance on a car. Without regular attention, even the finest cars and caregivers will soon deteriorate. Rest must be a priority. The brain’s frontal lobe especially relies on sleep to effectively function. Without adequate rest, the brain’s ability to access memory, control speech and resolve problems, is greatly hampered.
Family caregivers truly are at risk of physical and emotional problems of their own while they are providing care to a loved one. Fatigue contributes to an increased vulnerability to illness and it is prevalent in nearly all caregivers, yet unseen by most. The results of fatigue creep in over time, robbing the energy and focus of a caregiver. They often become so immersed in their role that they are unable to see their own health decline ‘right before their eyes.' According to one home care director, by the time many care providers realize they have become caregivers, they are already suffering from the symptoms of caregiver fatigue and are headed for burnout.
Lack of sleep can affect emotional as well as physical health. It can produce anxiety, anger, irritability, affect concentration and task performance, impair judgment to the point of danger (driving, using machinery and administering medications), and impact job performance. Sleep deprivation can lead to mental distress, memory loss and depression. One male caregiver reported that the emotional fatigue was greater for him than the physical exhaustion. He explained that his wife’s behaviors (for example, false accusations, memory loss, hallucinations and repetitive statements) often lead to daily arguments and disrupted routines that drained his emotions. He finally learned, over time, that he had to train himself to ‘pick his battles’ in order to avoid arguing as well as ignore some of his wife’s peculiar responses and redirect their daily conversations.
The physical consequences of sleep deprivation can include changes in appetite (weight gain or loss) frequent infections, addictions to alcohol or prescription drugs, problems with focusing, droopy eyelids and increased sensitivity to pain. In addition, lack of sleep can interfere with the body’s ability to regulate insulin production and the metabolism of sugar, putting caregivers at a higher risk of developing diabetes.
There are several ways that caregivers can take steps to fight fatigue and improve their physical and mental health.
- Recognize that fatigue is present and that it is negatively affecting daily life.
- Seek solutions to alleviate fatigue and sleep loss.
- Carry out these solutions with the help of family, friends or hired services.
One caregiver in a support group shared that she actually used respite care in her home to get a much-needed nap three times a week. Another woman asked family members to stay overnight once or twice a week to allow her a full night of rest. An important consideration is for caregivers to step back, set personal limits and encourage the care receiver to perform some of their own self-care activities. As time goes on, it can be easy to over-help and invite greater dependence by the care receiver. Others found, when they finally accepted outside help, they experienced a strong sense of relief. Most caregivers wished they had taken the help much sooner. In some cases, when 24-hour care is no longer achievable, moving a loved one to an assisted living facility or to a nursing home is the best solution.
Caregivers, as well as care receivers, need a well-balanced diet and adequate hydration during the day to stave off fatigue and vulnerability to illness. Try to avoid large meals, high fat foods and the drinking of fluids before bedtime. Taking vitamins, eating proteins, grains and fresh produce and decreasing sugar, caffeine and alcohol can also promote wellness. Caffeine is a mild stimulant and consuming it before bedtime can affect sleep. It is also a diuretic and will result in an increased need to urinate during the night. Alcohol is a depressant by classification; however, it does cause a person to sleep lighter and awaken more frequently.
Fortunately, there are many things that can help to decrease weariness and promote a good night’s sleep:
- Regular exercise can have a positive effect on improving sleeping habits as well as decreasing stress, depression and anxiety.
- Try to maintain a daily routine for naps and sleep so that the body can adjust to a rhythmic pattern.
- Listen to positive sounds to promote relaxation before sleep. Music or nature sounds, such as waves, can be soothing to the soul. Avoid watching stimulating television shows right before bed as this may bring alarming news that unsettles our mood and disrupts our ability to rest.
- Meditation, prayer, and deep breathing exercises are also options to use for calming our minds and bodies so that we can sleep. These can also be done if one awakens during the night.
- Try drinking warm milk, taking a relaxing bath, reading something pleasant and perhaps journal some thoughts prior to bedtime.
- If insomnia is prevalent, discuss medication options with a physician.
Caregivers must take time for themselves and focus on their own needs (both physical and emotional) to avoid depleting their strength and energy. Keeping a daily log of sleeping habits can be a “wake up call” to caregivers and a helpful tool for the doctor to determine recommended solutions. Record the quality of sleep as well as the frequency. Record also the foods eaten and the use of medication, caffeine and alcohol. Note the activities engaged in during the day as well as the emotions. After several weeks, trends may appear that offer great insight into the toll of caregiving and the decisions that need to be made to decrease fatigue and increase energy.
After years of sleep deprivation, fatigue can become a chronic state. The body’s biological clocks are disrupted and symptoms of aging seem to accelerate. One adult daughter, who cared for her mother daily for three years, felt she herself had aged 10 years and gained over 50 pounds. Three months after her mother was able to move to an assisted living facility, the daughter appeared physically transformed and actually looked younger than before she became a caregiver. She attributed it to finally being able to sleep normally and to focus on her own daily care needs now that her mother’s needs were being met by a caring staff.
It can clearly be seen that fatigue and sleep deprivation strongly impact the caregiver’s ability to provide the best possible care to their loved one. Family caregivers are at risk and must open their eyes to their own needs and solutions that may be available to them. Asking for help is a sign of strength, not weakness! When someone else takes over the caregiving responsibilities, even for a short time, caregivers can step back, focus on themselves, rest and get recharged.
Family Caregivers often find themselves in a role they did not prepare for and are not medically trained to provide. Many family caregivers have other commitments such as a spouse and children, or if their spouse is the care recipient, they may still support their parents in some way. Often a family caregiver still works a job or volunteers to serve the community in some capacity. These relationships may be just as valuable in the life of the caregiver as the care recipient and it is vitally important that these relationships continue, so they are healthy after the caregiving role ends.
Should caregivers feel they are the only one to provide the care or take charge of the situation? In some situations, they made a promise long ago before they knew of the situation they now find themselves. Books have been written on this topic, family psychologists will speak on this topic, even lawyers and financial planners have a voice on the impact of “keeping the promise.”
If someone were to ask the person being cared for if they expect their caregiver to “give up” their job, relationships, financial security, mental health or even future security to care for them—the answer would be no. One mistake may be in thinking this will be a short-term situation, and often it is not.
When building a care team start with the connections currently in place and build from there.
This team can be folks who can provide a break by coming in and sitting with the care recipient. Consider a friend, neighbor, faith community leader or family member who they can enjoy a sports game or movie with. Perhaps they can pick up lunch and come stay for an hour or two while some errands or shopping are accomplished. If the weather and mobility allow, ask them to take your care recipient for a drive or a walk.
Other forms of support may come in ways of taking on tasks that are important and don’t involve caregiving, such as mowing the lawn, cooking, shopping, picking up prescriptions, cleaning, or even taking the car for an oil change or maintenance.
From a distance friends and family members can show support by calling regularly, sending cards, letters and photos. Sometimes a distant family member can pay bills online or manage other household tasks. One family shared the story of how a distant relative will call and “watch” a football game together or just Facetime and read a book so the caregiver can leave the house knowing someone has eyes on the situation.
These suggestions may sound unconventional, so let’s go with creative! Most families keep their loved one at home due to the cost of care or worry of proper care in other settings. These suggestions may be out-of-the-box but remember, a care facility has a staff of folks who work eight-hour shifts and get a break from this caregiving job—family caregivers deserve a break as well.
The National Institute on Aging offers a guide on how to share caregiving responsibilities with family members.
By Emily Kearns
When we think of respite, that is taking a short break from caregiving responsibilities, what is our first go-to? It is often “taking care of business”—catching up on all we’ve let go of as we’ve had to prioritize our loved ones needs. We open the check book to pay our bills, get out the vacuum cleaner, do the long-awaited yard work. We think that this will help reduce our overall stress experienced while juggling caring for others and keeping up our home.
Guess what? You probably have found what I also learned when supporting both parents living with dementia. Taking care of business during my “off” hours surprisingly did not relieve the pressure I experienced. Not at all! Why not?
Provocative research by Dr. Dale Lund offers a surprise twist to respite. He found that for respite—taking a break—to be effective in reducing our stress and improving our sense of well-being, we need to be using that time to engage in something meaningful. Something that brings joy to us; most likely, something we used to enjoy but sidelined to make room for caregiving. This could be reading a favorite book, writing, walking, swimming, listening to music, attending an online class about travel, cooking or art. In fact, his research found that respite that is not meaningful engagement can actually contribute to feeling more stressed, depressed, frustrated, etc.
So—here’s the invitation. Let’s start the New Year by identifying what we have lost, what we put aside that used to be fun and make us happy. Then, let’s find a way to start to incorporate that into our self-care regimen. Why? For the sake of all. This also means that we need to flip the care partner scenario and, as care recipients, we need to be able to give permission to our care partners, especially our adult children and others, to use their respite time for fun. We can support them by suggesting that they take time to pick up something they once loved—to pick up where they left off. And, remember. The oxygen mask must go on you, first. Always! Otherwise, there will be no you, to put the oxygen mask on them.
Suggestions for Self-Care Practices
Meditation including music, color, visualization and focusing on where there is comfort and other sensation in your body—deep breathing to give that space. Also: laughter yoga, self-Reiki, forest bathing, art and more!
Additional tips to prevent or manage caregiver stress:
- Learn ways to better help your loved one—attend classes and trainings related to your situation.
- Find caregiving resources in your community such as adult day programs or respite services to give you a break.
- Ask for and accept help including using apps to help create a web of supports with specific ways others can help.
- Join a support group for caregivers and get counseling.
- Get organized.
- Take time for yourself and stay connected with family and friends.
- Take care of your health to be physically active, choose healthy foods and get enough sleep.
- See your doctor for regular physical and mental health checkups.
Website: On Caregiver Stress (Source: Department of Health and Human Services, Office of Women’s Health)
Website: On Reframing Respite and Dr. Lund
Book: "The Healing Self: A Revolutionary New Plan to Supercharge Your Immunity and Stay Well for Life," by Dr. Deepak Chopra and Dr. Rudolph Tanzi
BCDA is excited to open their 21st Senior Center—The OPAL Center—which stands for Online Programs for Adult Learning. However there are no doors or walls at this virtual senior center and members will participate in classes and programs online! More than 40 weekly class offerings such as fitness, line dance, Spanish, crafting, writing, meditation, Zentangle, drawing or watercolor, virtual tours of museums, cooking workshops, journaling, health topics, and more.
Voice reminder devices allow caregivers to customize reminders for their loved ones with dementia. Some voice-controlled technology allows caregivers to set a specific time for the reminders to play, while others work via motion sensor. Devices that work via detection of motion can be very beneficial for those who are prone to wandering, as caregivers can prerecord a message that reminds a loved one not to leave the home at nighttime as he or she approaches the door. For persons with dementia who only have minor memory issues, a small digital recorder, such as a memo pen or one that can be hung around the neck, might be helpful. With this type of device, persons can record reminders for themselves and play them back later.
Read past editions of the Caregiver Connection newsletter: