HoHum:
Rosalyn Carter said it best: There are only 4 kinds of people in the world- those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers
Paula C. Lowe said, “The lifelong process of caregiving is the ultimate link between caregivers of all ages. You and I are not just in a phase we will outgrow. This is life- birth, death, and everything in between. The care continuum is the cycle of life turning full circle in each of our lives. And what we learn when we spoon feed our babies will echo in our ears as we feed our parents. The point is not to be done. The point is to be ready to do again.”
WBTU:
Stuck between frozen and frenzied, caregivers do whatever they can do or do nothing. It can be nervous energy used to do absolutely everything, pushing limitations, or having numbness set in and not being able to do much of anything. Caregivers need and want to take care of themselves, but often don’t know when and how. The estimated $257 billion value of family caregiving doesn’t include the physical and emotional toll on the caregiver.
Caregiving affects relationships, finances, careers and personal activities. Challenges occur when trying to plan ahead for a caregiver and the one being cared for. Things can change moment to moment, let alone day to day. Accepting the difficult caregiving privilege means they will experience agony and ecstasy.
Thesis: Helping the Helpers
For instances:
Encourage caregivers to avoid burnout with self care
Doing the exhausting job of caregiving tends to crowd out a caregiver’s self care resulting in burnout. In the same way that the flight attendant advises the flier to put their oxygen mask on before putting on anyone else’s mask, the caregiver must care for self before caring for another.
Ron Shackleford wrote in Caring for Those Who Can’t, “The one thing I would tell a caregiver is to take care of self before you take care of the patient.” Writing from his experience with the elderly he continued, “Nurture yourself, or you will burn out... Love is not always logical. I believe that God’s way is to take care of oneself, pray a lot, rest, and eat well.”
If caregivers do not take care of themselves, there can be caregiver burnout. Caregiver burnout can range from depression to physical exhaustion to bizarre behavior. Terry Hargrave wrote: Frustration and burnout of caregivers is a major contributor to all sorts of family problems, like elder abuse, divorce, and sibling cutoffs. Explore and get involved in things that restore your own energy.
Caregivers need patience and tolerance with themselves. Resentment at having to give the care and taking care of someone else before self care can mount. Every caregiver has the challenge to find time for everything for everybody and usually put themselves last on the long list of priorities. Caregivers need to watch for exhaustion from the details, frustration from not having time for self, guilt for wishing they did not have those attitudes and feelings, anger that other people don’t help more than they do, and concern that personal irritability will affect their caregiving and personal health. Diet and exercise will help all of these.
52% of all caregivers report having less time for family and friends. This means caregivers no longer receive that emotional support from others that recharges their batteries. It is great to help those in need, but we must also willingly receive help when we have a need. Sometimes allowing self to come apart by venting or crying, allows the keeping it together self to remain healthy.
Encourage caregivers to maintain their own health
Do not obsess, do not do caregiving alone, or emotionally overburden yourself. Caring for others includes self awareness. Exercise, proper rest, eating plenty of fresh fruits and vegetables, and whole grains, keeping doctor’s appointments, and dental appointments all contribute to maintaining a caregiver’s optimum health. Visit the doctor when signs of sickness, exhaustion or depression appear. Don’t ignore any signs of change.
Encourage journaling
Writing down concerns and possible solutions can help the focus of caregiving. “How will I pay for Mom’s new medications?” “Who can drive Dad to his doctor when I have to work?” Journaling allows a safe place to vent frustration and pour out emotions the caregiver may feel reluctant to share with the care receiver or you.
Caregivers working outside their homes should be encouraged to consider taking time off. Talk to the employer about the Family and Medical Leave Act. Making an informed decision about the appropriate time for taking leave may involve speaking with the medical professionals.
Seek and accept help from others
Family, friends, church family and organizations may all offer some type of assistance. Find resources and remove pride standing in the way of seeking and accepting help
Remember to laugh
Even though my maternal grandmother no longer recognized who I was, she appreciated my visits. I would remind her of things we had done together. One story always made her laugh. She ripped her pants when I insisted we cross over a barbed wire fence to avoid the pigs I feared. Walking about fifty yards, we discovered the fence just stopped. Crossing the fence had protected us from nothing. Don’t forget that “A cheerful heart is good medicine, but a crushed spirit dries up the bones.” Proverbs 17:22, NIV.
Treat others respectfully
Caregivers should treat the person they care for with respect, and care receivers should treat the person giving the care with respect.
While waiting for my daughter to receive treatment in an emergency room, we observed one woman in a wheelchair receiving ill treatment. She asked her caregiver to help her get her foot back on the footrest support when her foot had slipped to the floor. The caregiver raised her voice and scolded her for allowing that to happen. The elderly woman did not receive her help, nor did anyone come to her aide. The woman in the wheelchair was not treated with respect.
One of my deepest regrets comes from my ill-treatment of my loving mother. My mother sacrificially came 3 hours from her husband and home to my home to care for me and my daughter after a surgery. My immense pain did not give me permission to scream at my mother. I inexcusably lost my self control and treated her disrespectfully. I did not want my own daughter to emulate disrespectful behavior. My mother graciously accepted my tearful apology.
Caregiver should not treat an adult like an infant. Remind caregivers to remember who the person used to be before they deteriorated. Feeding and caring for your parent physically does not change the fact that the person remains your parent.
Pray for, or with, the caregiver
This is one of the practical ways to help. Many offer to pray for the dying, but often, they overlook the concerns of the family. Statistically the majority of caregivers are women. Many appear to handle the situation well, but the load of physical work and the emotional concern is heavy. The whole experience may have come to them as weighty and overwhelming and they may feel ill-prepared.
Encourage caregivers to go to God and to draw upon their inner strength, courage and the hope through the Holy Spirit and to take in spiritual nourishment. This helps them experience communication with God during the difficult lean times of caregiving. “Satisfy us in the morning with your unfailing love, that we may sing for joy and be glad all our days.” Psalms 90:14
“But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31, NIV.
IF the Lord prompts, please listen and obey. He knows the needs. He may prompt you to find someone to run an errand for the caregiver, or allow the caregiver to take a nap. Caregivers also feel blessed when someone offers to polish their nails, give them a massage, cut the lawn, do repairs or walk the dog.
Maintain contact
Even though the caregiver is choosing to take care of the person and to be socially isolated, the caregiver can still miss contact with friends, just as the care receiver misses contact with people. We can occasionally but briefly, just to let the caregiver know you care. You can stop by, but remember not to judge the house if it’s not ready for company. Caregivers who maintain social contact and enjoy life have reduced stress. Stay with dying while caregiver goes to church
Encourage caregivers to join a support group
Caregivers need a safe place to share frustration without feeling guilty. Sharing experiences with others can add insight and offer other alternatives they may not have considered. It helps to know others experience the same concerns and to have a safe place to sound off.
Offer practical, specific help
Don’t say, “Call me if you need anything.” People rarely ask for help. The many needs can overwhelm. They may not know whom to ask for help or may be concerned about inconveniencing someone. Most welcome the times when someone will say, “I’d like to come over Thursday afternoon for a couple of hours while you catch up on things you need to do. I’ll also bring dinner.”
One caregiver came up with the Fishbowl idea- if they say call me if I can do anything, she tells them to take a task written on strips of paper from the fishbowl and then next time they come to help her with that task: https://hdsa.org/wp-content/uploads/2015/02/12048.pdf
Encourage caregivers not to fear asking questions
Being an informed caregiver helps them perform better under stress and helps them with future emotional and physical encounters that will challenge them physically, emotionally, psychologically, socially and spiritually. While asking questions, listen carefully, as the suggested solution might not be what you want or expect.
Use free websites to inform others.
Often people who desire daily updates about their care receiver bombard the primary caregiver with questions. Caring Bridge provides a free resource to send information. A care manager can update as often as desired, and the patient can read and reply to messages. Go to their website, www.caringbridge.org to view their helpful information and watch a brief video.
Another website that has been recommended to me is www.lotsahelpinghands.com; Lotsa Helping Hands provides an easy way to organize help for people in need. Use the care calendar to assign meal deliveries and coordinate rides to appointment. Stay up to date with weekly announcements and offer emotional support by sending well wishes.
Maintain open communication with the patient
Caregivers may need encouragement to tell their loved one, “I find this situation difficult, and I want to acknowledge your fears and needs before my own.” Family and friends can talk about events from the past and present together, even when the mental state has deteriorated.
Be mindful of the children
Don Piper wrote, “One of the things that hurt me most during my recovery was the sense of pain my children had to cope with.” Children of all ages need as much attention as can be given at this time. Seek professional help if appropriate.
Taking care of a loved one is a privilege, but it’s also a challenge
61% of surveyed caregivers seek advice from a friend or relative and 44% search for help in books or other materials. Your ministry will bless people, and families will treasure you as one of the family’s assets. Overwhelming day to day events become more bearable because of the thoughtful gestures of caring people.
Don Piper wrote, “The capacity for sacrifice and service that human beings have for one another knows no bounds. With all our faults, surely God must have meant that the kindnesses shown to me during my injury and recovery were paramount examples of us being created in his image.”
Don’t take away a person’s gift of giving, depriving their blessing. Caregivers need to allow the care recipient to give to them as well.
Go Easy on Yourself
Edward Albert wrote, “The simple act of caring is heroic.” Why can caring feel so exhausting, stressful, emotionally challenging, and arduous? Tender and human predicaments do not eliminate painful feelings. Be gracious with yourself. Remember that whatever you can give is enough. The same philosophy applies to caregivers.
When you don’t feel up to talking about a topic, tell the person, “I am feeling a little overwhelmed right now. Can we talk about this after I’ve had time to think about it for a while?”
When you see a person giving up, and you believe you can’t make it without him or her, don’t say that. Instead, tell the person you wish things were different and that they didn’t have to go. Say you will miss them terribly, but you will be fine and you will get through it with God’s help.
Helping long distance brings extreme challenges
Family members working together as caregivers need to agree in advance how each member’s skills can complement each other. Those able to take on what best suits them, benefits everyone. One might get weekly groceries and another may do the accounting. One may have more knowledge and experience working with the medical profession. Anticipate changes to the best of your ability as the loved one’s situation changes, realizing you can’t anticipate every change. Realistically set reasonable goals. Decide what the family member is willing, and can be expected, to do. Knowing how often each family member can afford to mentally and financially travel, helps other family members rotate the caregiving. Each must decide how taking on the additional responsibilities affects the family.
Make available the Long Distance Caregiving pamphlets
Keeping vigil
Some feel they must keep vigil around the clock. This can produce guilt and resentment of the dying person by the family. Some feel guilt about resentment. They dying person may feel guilty for putting their family through this emotional time. It’s a vicious cycle and is especially true when the person lives longer than expected.
You shouldn’t try to care for the dying individual by yourself. Allow others to share in this time. This allows the care receiver to experience the love of many and helps fend off the feeling of isolation, self rejection, and abandonment. As a body of love, a community of caring people, we can smile, tell stories, learn new ways to help, share beautiful moments of silence and prayer. Together we can create a place where our dying friends can feel safe and make the passage from life feeling loved.
Henri Nouwen wrote in Our Greatest Gift, “Caring together is the basis of community life. We don’t come together simply to console each other or even to support each other. Important as those things are, long term community life is directed in other ways. Together we reach out to others. Together we look at those who need our care. Together we carry our suffering brothers and sisters to the place of rest, healing and safety.”
Nouwen also wrote, “Care is not an endurance test. We should, whenever possible, care together with others.” The togetherness makes it better for the one receiving care and for those giving care, which also look out for one another.
Taking care of yourself allows you to step away from the intensity of the situation and to regain your physical, emotional, and spiritual strength. Some family members of the dying feel they have to keep vigil. Their guilt about the relationship or situation makes them feel their presence is a form of penance. Caregivers must take care of themselves, or they will not be helping the care receiver. What good would it do if the caregiver’s lack of self care resulted in an illness that prevented them from giving care at all? Focus on a balance between caregiving and living a normal life.
Lingering Loved Ones
Sometimes when a person seems physically ready to let go, the spirit seems to keep him or her here.
Hospice highly recommends and advises the family to “give the dying person permission to go.” It helps the caregiver and the care receiver. Giving permission may be one of the hardest things someone ever has to say. If a dying person sense a family member clinging and unable to let go, he or she may try to stay alive beyond what seems physically possible. Each one needs to say, “I will miss you terribly, but I love you enough to let you go.” This is the ultimate, unselfish parting gift to a loved one.
Hospice recommends the loved ones let the dying person know they do not want them to go, but also tell the person that the family will be okay. Promise to take care of the spouse, or promise to take care of the dependent sibling.
Many have reported instances of an individual dying after a caregiver left the room for a short time, and the caregiver felt tremendous guilt that the person died alone. Many believe the dying person planned it that way to spare the person the traumatic experience.
LeAnn Thieman wrote, “Some people experienced in the field believe the dying person has some control over when he or she leave this earth- that they deliberately wait until they are alone, to spare their loved ones the sorrow of that moment. Others say it is simply coincidence. One thing my 30 years of nursing taught me is that we cannot make plans or promises for that moment of transition. It is completely out of our hands. Being there at that moment of death is something over which we have no control. The same creator that we believe forms life determines the time of its end. Take comfort in that. We can only say what we must, and do what we can, and turn the rest over to whatever higher power we believe in.”
So what?
Don’t Doubt your Calling by Jo Anne Perez
Sometimes I think, “Who am I to give counsel to others? What makes my voice better than a sister or a mother?”
When I’m filled with internal, accusatory self doubt, I remember Paul said, to boast in Christ and not to pout.
I know who I am, because of who I am in Christ. I’ve been given His wisdom. It cost Him a great price.
I didn’t get this knowledge, gathering dust on His Word. I’ve been changed forever, because of what I’ve heard.
I must always remember, I’m His chosen one. I have no need for worries, even when under the gun.
He placed His Spirit inside, to guide me and direct. His anointing corrects me, On His Word I reflect.
If you’re wondering why God has you doing what you do, Trust your calling and His direction. It’s for Him, not you!
