While this example speaks to the needs of a younger generation, I believe the situation is the same for older adults as well. Our communities and businesses have an excellent opportunity to design for the needs of older adults because, when you plan for them, you benefit everyone in the community. Efficiently designing for older adults requires design thinking because it is crucial that thought, empathy, and emotion are incorporated into the design. An efficient design will allow an older adult to continue to age independently and help them feel safe and secure in their surroundings.
Making the transition to an age-friendly community can be a process. However, there are relatively small-scale design features a city can implement to get the innovation process started. Like the accessible wheelchair swing, brightly painted crosswalks, wheelchair access on every street corner, and handrails along walkways are just minor changes communities can make to keep older adults and their caregivers active in their community. Caregivers, too, can play an active role in the shift in design for our communities. If your loved one needs a wheelchair ramp on their street corner, then consider calling your neighborhood associations or advocating on their behalf at your local town hall meetings. Notifying community organizations, businesses, government, etc. of the specific needs is the fastest way to see changes.
Over the past fifteen years I’ve witnessed a shift in this direction—a shift that recognizes the needs of caregivers and offers support to help you provide the best care to older adults. There are resources and people out there advocating on your behalf and I am encouraged by the progress, but we aren’t all the way there yet. Not all communities offer fair pricing for adult day services or respite care, and we haven’t really talked about caregiving on a personal one-on-one level. There are ways to maintain other relationships while caregiving, and it is okay to say you can’t provide care today.
As an activities professional, I worked with individuals living with Alzheimer’s disease or other forms of dementia on a daily basis. I had to learn non-medical ways to intervene for each when they started to become upset or anxious. Designing a caregiving plan that would benefit the individual while reducing my stress and worry about them was essential to my ability to provide a good quality of care and a good quality of life to each resident. Over time, I learned what worked and what didn’t work, and I soon had many tools in my “arsenal” for each resident I worked with. These tools are what you, the family caregiver, are left to figure out on your own; as you play many different roles, like nurse, aide, dietitian, and transportation and recreation provider, it is nearly impossible to create a cohesive caregiving plan.
You are caring for someone you’ve known for some time; they know you and trust you. You have memories with them that have created a foundation for the caregiving process. But your relationship with them shouldn’t have to take the back seat. Activities provide a fantastic opportunity to refocus your attention on the relationship with your loved one, and thus make the caregiving experience more manageable and less stressful. As you continue on your caregiving journey, it is important to recognize that you are not alone, and that there are resources and connections available to ensure that you are able to provide the best quality of care to your loved one. Don’t be afraid to explore your boundaries and decide for yourself what type of care you can provide on your own, and where you may need additional support.
Three Ways to Avoid Caregiver Burnout
No matter how you became a caregiver, the job has specific characteristics. It will require your full attention. It will take all of your emotional capacity. You will have to watch as your loved one declines in health and capability, but you will also be witness to a beautiful transition in the human life cycle. I’ve often equated the aging process to that of a butterfly. We traditionally view old age as a deterioration of life, but, honestly, it is not—the amount of love and laughter that older adults have still brings me a smile when I’m feeling down. Or worrying about my age. Despite being told that our later years are filled with decline and loss of independence, these individuals find a way to live life to the fullest and to find humor in even the darkest of times.
How does this help a caregiver? The general fear that our elders are actively transitioning from this life is a constant in the mind of a caregiver. This future mindset rips away opportunities to be in the moment with yourself and to grapple with the emotions you are experiencing. You are left to move through the motions without ever truly being given the chance to express how the caregiving is making you feel. Providing care to another person is a sacrifice, and it takes time to process everything you are witnessing, feeling, and doing. These are your loved ones. These are people you have spent time with, have built memories with, and who have no doubt taught you many of the things you know today.
Such an intense experience as a caregiver can wear on your emotions and even on your ability to provide quality care for the duration of the recipient’s life. You need to take breaks from caregiving periodically, or you will get burned out. Many caregivers interpret the general stress and tiredness they feel as just another symptom of a hectic, day-to-day life. We are used to working long hours and making up for that time with a two-week vacation each year. While a holiday helps, two weeks away won’t be enough to prevent caregiver burnout. Identifying symptoms of exhaustion and incorporating a self-care routine are essential skills caregivers should develop, especially if they are expected to provide high levels of care over a long period of time.
What Is Caregiver Burnout?
Caregiving doesn’t have normal business hours, has no concept of vacation days, sick days, or personal days, and occurs 24/7, whether you are asleep or awake. To raise a family, go to work, and manage finances, all while providing care to a loved one, leaves you with little time to spend on yourself. But to purposefully take time to slow down is exactly what you need to be able to handle all the responsibilities in your life. To expend all your energy without recharging will cause emotional, mental, and physical exhaustion. When prolonged, this exhaustion can lead to resentment or anger, poor self-care and caregiving, depression, stress, and anxiety, all of which will inhibit your ability to manage all your responsibilities.
The Alzheimer’s Association identifies ten symptoms of caregiver stress14:
1.Denial about the disease and its effect on the person who has been diagnosed.
2.Anger at the person with Alzheimer’s or frustration that they can’t do the things they used to be able to do.
3.Withdrawal from friends and activities that used to make you feel good.
4.Anxiety about the future and facing another day.
5.Depression that breaks your spirit and affects your ability to cope.
6.Exhaustion that makes it nearly impossible to complete necessary daily tasks.
7.Sleeplessness caused by a never-ending list of concerns.
8.Irritability that leads to moodiness and triggers negative responses and actions.
9.Lack of concentration that makes it difficult to perform familiar tasks.
10.Health problems that begin to take a mental and physical toll.
It is hard to distinguish between yourself and your role as a caregiver because providing care to another person who needs you in such an intimate way forms a strong connection between the two of you. To step away from that role to take care of yourself can cause feelings of guilt, so many choose not to, and continue to provide care even though they are too tired or stressed to do so correctly. This chapter will go over three main ways you can avoid caregiver burnout: 1) self-care, 2) find a support network, and 3) don’t just focus on your loved one’s physical well-being. Incorporating these ideas into your daily routine should make the experience