by Susan Stafford, for The Bulletin Special Projects
Frank and Helen have been married for 57 years — college sweethearts who raised three children and now have seven grandchildren. Four years ago, Frank was diagnosed with Alzheimer’s and Helen committed to Frank, herself and her family that she would care for him in the home where they had raised their family.
Now, four years later, Helen is exhausted and depressed. Her arthritis is becoming much more painful and limiting, making it difficult to continue to help Frank with many of the activities of daily living with which he needs assistance. Her blood pressure has continued to rise and it’s been two years since she has seen the doctor. Helen has given up all of her past social and volunteer activities and no longer takes her daily walks. She feels guilty whenever she leaves for even a short time.
Up to this point in time, Helen has declined offers of help from family and friends, feeling that no one can provide the same care for Frank that she can. She knows him so well that just by looking in his eyes she can read how he is feeling. The couple’s oldest daughter, Janet, has been watching the decline in her mother’s physical and emotional health and has decided it is time for the family to intervene in a loving way to provide support and respite care for their mother.
The story of Frank and Helen is replicated in a multitude of iterations across the country in a wide spectrum of households and relationships. According to AARP and Pew Research, some 40.4 million unpaid caregivers are currently caring for an adult friend or family member aged 65 and older who is ill, frail or disabled. They estimate that the caregivers’ collective 37 billion hours of unpaid caregiving is worth $470 billion.
Because hospitals are releasing patients much more quickly in order to control costs, caregivers at home are required to manage much more complex health issues that used to be handled by doctors and nurses. Caregiving today tends to be more long term and more intensive.
“We’ve never faced this kind of longevity, with caregivers managing chronic conditions for five or 10 years,” said Kathleen Kelly, executive director of Family Caregiver Alliance.
Caregivers are engaged in a life-changing journey that comes with no one-size-fits-all instruction manual. Each day can require adapting to changing and unexpected circumstances. It’s like being thrown in the deep end of the pool with no guidance and being expected to swim to the other end on your own. Each person’s situation is unique and caregivers, with no blueprints to follow, learn from their mistakes and adapt as needed.
To successfully navigate this new world, there are things that caregivers can do to take care of themselves so they can then better care for the people needing their assistance. As a caregiver, it is often hard to make time for self-care, but there are things they can do to replenish themselves and refocus.
If you or someone you know is a caregiver, there are a number of things that can be done to help relieve stress and prevent becoming overwhelmed.
• Get organized. Make to-do lists, and set a daily routine.
• Take time to appreciate your accomplishments and know when to let go of things you can’t control.
• Remember to breathe. Even 10 minutes of quiet or meditation can help you relax and refocus.
• Your own health is of utmost importance. Make and keep your regular medical and dental appointments, and report any health concerns. Let your doctor know you are a caregiver.
• Keep your sense of humor. Laughter really is the best medicine.
• Stay in contact with the outside world. Talking to someone helps. Find other caregivers who will understand, perhaps in a caregiver support group online or in person. Reach out to your friends and family to ask for and accept help.
• Maintain a positive perspective by finding three things that happened during the day for which you are grateful. You may be able to reframe a negative experience to see what you learned from it.
• Eat healthy foods and exercise as often as you can. Get enough rest and make time to relax.
• Build your skills with caregiving classes. Contact the Central Oregon Council on Aging or ask your doctor for suggestions.
• Find caregiving resources in the community to help you — adult day care services, in-home health care, respite services, transportation providers, meal delivery, volunteer resources at local churches — and make adaptations to your home such as ramps and grab bars.
Caregiving is an emotional, logistical and physical challenge. Feelings of guilt, obligation, anger, resentment, loneliness, grief and a sense of loss are all totally normal. There is no right way to feel. Each person is different.
Physically, the caregiver may be required to take over chores that used to be done by the care receiver. There may be lifting, carrying, stooping and reaching involved in assisting with physical needs like walking, bathing, dressing, transferring, and toileting.
The caregiver is often responsible for making doctor appointments, refilling prescriptions, administering medications, and providing transportation. There are also errands, grocery shopping and housework to be done or arrangements made with others to do them. There may also be financial and legal issues to be dealt with.
Often the caregiver is the main source of emotional support for the person being cared for and may feel responsible for their moods and reactions. Unpredictable mood swings and behaviors by the patient can be challenging and tiring.
Caregiver stress can take many forms, from depression and anxiety to making unusual mistakes to turning to unhealthy behaviors such as smoking, drinking too much alcohol, or abusing drugs. Other signs and symptoms to watch for include: feeling overwhelmed; feeling alone, isolated, or deserted by others; a change in sleeping patterns — too much or too little; marked weight change; feeling tired most of the time; losing interest in activities you used to enjoy; becoming easily irritated or angered; feeling worried or sad often; and having recurrent headaches or body aches.
As a result of prolonged caregiver stress, a variety of health problems can develop. Depression and anxiety can increase your risk for other health problems, such as hypertension, heart disease and stroke. Stress can weaken the immune system, giving rise to more or longer colds and flu, reducing the effectiveness of vaccines, and increasing recovery time from surgery or illness. Stress can create problems with short-term memory or attentiveness.
The most important thing is to do something for yourself every day. It doesn’t matter how small it is. Whatever you do, don’t neglect yourself. Remember that the flight attendant on the airplane always instructs you to put on your oxygen mask first before trying to assist someone else. When your needs are taken care of, the person you care for will benefit, too.
Besides those things a caregiver can do to take care of themselves, it is essential that they receive practical and emotional support from others. Respite care provides time for the caregiver to get away from their normal duties and take some time for themselves. Such care can be provided in the home by family and friends or a paid caregiver or volunteers. Adult day care programs provide a place for the care receiver to spend several hours engaged in activities with others, freeing up the caregiver. Nursing homes and assisted living facilities will often provide residential care for a weekend or short-term overnight stays for seniors who need assistance with daily living.
Having some time to themselves, to relax or take care of other responsibilities, can help caretakers avoid burn out. The National Respite Network recommends that caregivers consider respite before they become overly stressed or tired. It is wise to research respite care options in advance, so that they are easily accessible when needed. Using respite services also provides an opportunity to try facilities they are considering for possible future care before making a long-term commitment.
In best case caregiving scenarios, families, loved ones and friends come together to share the responsibilities. Each person has special skills and strengths that can be a valuable part of the caregiving process. Even those living at a distance can assist by gathering information, dealing with financial and legal issues, identifying services and programs, and handling communication — all possible using the internet and cell phone.
By sharing the care, each person is provided perhaps a final opportunity to give back to a loved one in ways that nurture, heal, and create meaningful shared experiences. Frank’s family can gather together to help and support Helen and to have special ways of loving and giving back to their father.