By Jennifer Crane, MS, CDP
The Year 2020 has been a very difficult one for everyone, but for people who are acting as caregivers for a loved one in the community this year has been especially challenging. Such caregivers are those individuals who find themselves, whether intentionally or not, thrust into the role of caring for an older adult who might be a family member, a neighbor, or friend. The changes and restrictions enacted this year due to COVID-19 have made caregiver tasks far more complicated than ever! Ordinary caregiver responsibilities, such as taking a loved one to a doctor appointment or having helpers come into the home, may now require extraordinary efforts to accomplish.
Home visits and services from third-party organizations (e.g., Visiting Angels) have been limited or nearly non-existent during the pandemic. Consequently, the bulk of the caregiving responsibilities has fallen squarely on the shoulders of just one person. In-person doctor visits can now be difficult to schedule, and caregivers regularly face a fight when it comes to accompanying their charges.
Telehealth “visits” and video consults are becoming more commonplace. However, telehealth sessions can be challenging, especially when loved ones were dealing with cognitive decline and find it confusing to participate in such visits.
Respite care for a caregiver’s charge(s) has limited and inconsistent availability (if at all), due to COVID-19 restrictions.
Placement of a charge in a facility (if necessary) may also not be an attractive option due to facility lockdowns.
For caregivers in 2020, it can often be a 24/7 exercise of physical, mental, financial and emotional effort with little to no real break or rest. For some caregivers used to a high-level of activity on behalf of their charge, such a grueling schedule can seem normal. For other caregivers, such a workload can simply be too much to bear. While this all-encompassing responsibility is difficult for any caregiver in the short-term, it is not sustainable in the long-term. The heightened isolation and increased responsibility caregivers have experienced in 2020 can vastly increase their stress and anxiety. The result is caregiver fatigue.
What exactly is caregiver fatigue?
According to the folks at the Cleveland Clinic (Caregiver Burnout, 2020), caregiver fatigue is a general feeling of exhaustion that leads to negative feelings and a shift in attitude that makes it difficult to have to motivation and patience to continue in the caregiver role.
Caregivers who experience caregiver fatigue often are:
not getting the help and support that they need;
overextending themselves physically and mentally;
are financially struggling; and,
commonly describe themselves as “losing themselves” to their caregiver role.
Fatigued caregivers are feeling stress, anxiety and/or depression, fatigue, malaise, and even feelings of guilt that they are feeling these things in the first place. The longer this condition continues, the more apt a caregiver is to experience physical aches and pains, sickness, mental breakdowns and other symptoms of stress (Caregiver Burnout, 2020).
In times past, it was difficult for caregivers to arrange time away… time for themselves to recharge. Due to the pandemic restrictions in many localities, such respite has become nearly impossible in many cases.
For example, it is harder to get someone to come and help out with the caregiver’s charge so that the caregiver can get away even if only for a short period of time. Even if some a substitute caregiver can be arranged, it is frequently more difficult during a pandemic to find things to do in places (e.g., dining, entertainment, or recreation establishments) that are open or are not already filled to capacity. It can also be difficult to know what is safe to do since often caregivers are nervous to do something that would be risky to their loved one.
It is imperative, however, that caregivers take time for themselves. It may take some flexibility and creativity, but this time to recharge is key to being able to keep on going. Caregivers should scratch out time every day to do something for themselves. Even brief moments, whether it is during a charge’s nap time or before they wake up for the day, can provide a welcome break.
Suggestions for caregiver recharge activities include:
doing a puzzle or playing a one-person game;
alone time with a bowl of ice cream and/or a favorite show;
sitting and staring out the window sipping coffee or a favorite beverage;
exercise on in-home equipment (e.g., treadmill or stationary bike);
a nice soak in a warm/hot bath with a good book; and/or
anything that is enjoyable (and permitted under the caregiving arrangement) that gives a chance to recharge a bit.
The idea is for the caregiver to give him or herself the chance to not be on duty and do favored activities for self, even if just for a few minutes. When possible, ask for help from family or a neighbor in order to work out time alone for a walk or a drive with the windows down. FaceTime with a close friend or family member to talk, whether it is about current stressors or just to have a chance to laugh and relax a bit. Listen to music while doing laundry or cooking dinner. Find small ways to bring joy into each day.
Caregivers need to remind themselves often that they are doing the best that they can. Not every moment will be perfect, but each moment will work out no matter how difficult — even in stressful pandemic times. Each “mistake” (whether assumed or actual) a caregiver makes is an opportunity to learn, and each victory is an opportunity to enjoy. Grief, tears and harder moments will come and it is alright to struggle. It is important to give self permission to have these moments and not look at them as evidence of something wrong.
“I used to get really worked up because I didn’t know how to handle something or I goofed and upset Mom,” explained one caregiver, Kathy M. of Virginia. “Eventually I realized that it was ok, I didn’t have to be perfect, I was doing my best and Mom and I were doing ok. We were getting through it. That really took the pressure off!”
Caregivers regularly put a lot of pressure on themselves about what “should be happening” and that will add to overall stress. A caregiver’s role is multi-faceted and is ever changing depending on the changing needs of their loved one.
If their loved one has dementia, this stress is particularly acute due to the progressive nature of the condition. As Tara Reed points out in her book What to Do Between the Tears…A Practical Guide to Dealing with A Dementia or Alzheimer’s Diagnosis in the Family, caregivers cannot push pause on their life and stop living due to caregiving responsibilities (2015).
Not only could caregiving last for years, the pandemic restrictions could last for a longer time. A caregiver needs to think about their own happiness and continue to seek opportunities to grow and have joy. They need to care for self first, and then they are better able to focus on the needs of their loved ones who need support (Reed, 2015).
If you have any questions, please contact Age With Dignity on our contact page at https://www.agedignity.com/contact.
References:
Reed, T. (2015). What to do between the tears…: A practical guide to dealing with a dementia or Alzheimer’s diagnosis in the family. Pivot to Happy Press.
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