By Dr. David and Rhonda Travland
Authors, The Tough & Tender Caregiver, a Handbook for the Well Spouse
HERE ARE THE FACTS:
People who have never been a caregiver are clueless.
They seem to think caring for a loved one at home is a picnic. “After all, you get to be with him.” & “You don’t have to work.” Most full time caregivers would give anything to have the opportunity to go back to work. Compared to caregiving, going to the office is more like recreation.
Most of the advice caregivers receive from these people is useless.
“Meditate,” “spend time gardening,” “trust in the Lord”, “count your blessings,” and so forth. We believe caregivers should be given advice based on practical experience. We want caregivers to receive advice that will make a real difference in the day-to-day lives.
As health care professionals and former caregivers, we believe there is a shortage of practical information available about what caregivers should be doing to minimize stress and avoid caregiver burnout. In our seminars caregivers ask us to summarize the most important caregiving tips we discuss in our book. Caregivers are hungry for advice that can help them find joy in their lives despite their caregiving responsibilities.
Below is our top ten list of ways to defeat caregiving stress:
No. 10. Ignore messages from our society that “It is wrong to be selfish.” They come in a variety of forms, such as “It is more blessed to give than receive.” These are dangerous messages that can encourage caregivers to sacrifice their own lives on the alter of a loved ones’ needs. Caregivers who believe it is wrong to think of themselves are flirting with burnout. Not only will they suffer, but their loved one may lose their caregiver, the one person in their lives who cares enough about them to provide care. The advice is this: you should pamper yourself at every opportunity.
No. 9. Avoid people who make you feel bad. Friends and family members who have not been caregivers are not tuned in to the daily grind of caregiving, and are likely to make remarks that are well-intended, but ignorant and hurtful. When possible, stay away from those people. Find people who are not inclined to offer unsolicited advice.
No. 8. Make a list of what help you need from others and keep it handy. Friends and extended family will tend to offer you the kind of help that will make them feel better, or help they find convenient and easy to give, whether or not it is what you need. Be prepared with your list so you can say, “I appreciate your offer, but here’s what I need instead. Could you mow my lawn? That would really help us.”
No. 7. Require your ill or disabled loved one do as much as possible for themselves. This not only helps the patient feel better about themselves, but it takes away some of your burden. It also discourages the kind of dependency that some chronically ill or disabled people fall into that handcuffs caregivers to their home. Also, insist that your ill or disabled loved one speak for themselves. For example, let the patient interact with their doctor. Do not act as the spokesman for the patient in the doctor’s office. If you do, the patient and his or her doctor will come to see you as completely responsible for all aspects of their care, which will intensify the patient’s dependency on you.
No. 6. Learn the symptoms of caregiver burnout so you will know when it is time to ask for help. Those symptoms include yelling at your loved one, difficulty sleeping (or waking up), eating too much “comfort food,” driving recklessly, spending money on useless trinkets, chronic sadness, new aches and pains without apparent cause, crying spells and so forth.
No. 5. You should provide care for your loved one at those times that are most convenient for you. This allows you to create a schedule that can leave blocks of time for your personal activities that serve as a break or respite from caregiving duties. These caregiver breaks should be scheduled several times every day to provide balance between your needs and the needs of your loved one.
No. 4. Protect your privacy. You do not owe your loved one a complete, detailed explanation of where you are going or what you are doing when you leave the house to “run errands.” Care recipients often fall into the trap of thinking they are entitled to exercise control over the comings and goings of their caregiver. You can spot this sense of entitlement when they insist on a detailed itinerary as you are about the leave the house. At times it is their anxiety about being left alone, but it is also frequently about power; they want to be in control of events. You must create boundaries around yourself and enforce them.
No. 3. Distinguish between your loved one’s needs and wants. See to it that the patient’s needs are met, but satisfying wants, such as recreational activities, videogames, board games, and so forth, are far less important than your need to be away from the patient on a regular basis to recharge your batteries. Satisfy the patient’s needs, and negotiate about the wants.
No. 2. As soon as it becomes clear that your loved one’s disease or disability is chronic, and that they won’t get better anytime soon, begin to scale back on the intensity of care you are providing. Our immediately burst of care when a loved one is first injured or becomes ill is fueled by adrenaline and cannot be sustained for the long haul. Acute care is like a 100 yard dash, but chronic care is a 26 mile marathon. Make sure you make the transition as soon as possible.
No. 1. Make arrangements for respite care, whether by hiring someone to sit with your loved one periodically, or enrolling the patient in a day care program. Our ill or disabled loved ones may resist having someone other than you care for them, but it is essential to make the arrangements before caregiver burnout becomes serious. In hiring someone to spend time in your home, make sure someone does a background check. Day care programs are a marketing strategy for reputable nursing home and assisted living facilities. This familiarizes patients and their families with the facilities for when placement becomes necessary or desirable.
]]>As we watched the recent special about Farrah Fawcett’s ordeal with cancer, it only solidified the premise of our book. Ryan, Farrah, family and friends were filmed speaking about the love and devotion and bravery it has taken to endure this horrific experience. While all of that is true, many healthy, well spouse caregivers felt all of those warm, fuzzy loving feelings too, but it was at the beginning. For some of us it was when we heard our spouse’s diagnosis for the first time and we were determined to be there for them……after all we said our wedding vows. For some of us it was when the accident or the injury invaded our lives and we can still feel the rush of adrenaline and the prayers we said to “just save” our spouse regardless of the damage. THERE IS A DIFFERENCE between caring for an acute, terminal illness and caring for a chronic, disability. The healthy spousal caregiver reacts differently if we feel death is imminent. But when this drags on, on, on on on on on…………We scream in our heads…WHEN WILL THIS END?….Then we feel guilty.
Sadly, after the terminal illness or accident roots itself permanently in our relationship and our caregiving becomes a daily, yearly, life-long routine, we begin to wonder “how did I lose myself along the way?” The problem is that a moment in our life commanded all of our energy and when the moment passed, we never made the change in how we were going to care for our wife or husband for the rest of our lives. We lost our independent life the minute they became sick or disabled.
The path to undoing this behavior is to renegotiate our caregiving routine with our spouse. Tell them what you cannot do anymore and what you want to do. Let them know you cannot be a friend and companion and still feel warm and fuzzy about the really awful parts of caring for them.
Many of us say “Well, they would do it for me if the situation was reversed.” But, we ask other spousal caregivers, “Is that really true? The man or woman you once married, would they really wipe your butt, give you medications, lift you and carry you, make accommodations in every restaurant, hotel room and social setting every time you wanted to go out?”
Some people say absolutely and some will rethink their mission statements and reveal, “No, actually, he would not have done any of the things I do for him. He always hated it when I was sick.” Then we ask, “Why then are you living in a stress filled world without enough sleep and without a social outlet?”
Do we really owe our sick or disabled partner our entire life and well-being?
Dr Dave & Rhonda Travland