The month of Elul is the only time it is brought down in Halacha to visit the graves of departed family members.  While there are a variety of reasons for this, it is a way to connect us to the full spectrum of the lifespan and to connect us to those who came before us. Instead of being a morbid practice, this minhag is meant to assist us in focusing on reevaluating our actions and priorities in our lives.

In the vein of both teshuva and connecting with family, now may be a good time for caregivers to examine how their caregiving life was this year: Is there anything to be especially proud of this year?  What could have been better? Could you have used more help with something?

If one thing is certain, caregivers don’t usually get the credit they deserve and often don’t give themselves that same credit for their tremendous work for family members. The past two years have been particularly difficult with COVID-19, which has made caregiving even more difficult- with concerns about keeping loved ones safe, managing restrictions and less care being available overall. It has taken a toll on those we care for as well as on ourselves.

With all of these challenges in mind, here are some things to enhance caregiving for the coming year:

  1. Be an educated consumer. First and foremost, we want our care receivers to be cared for in the best way possible. Knowledge is power. Know what your loved one’s diagnosis is. Know the symptoms. Know what the course of their illness is expected to look like. It is also important to familiarize yourself with the medical and long term care system (Medicaid). There are many caregiver support programs available to provide education and information about resources.
  2. Evaluate priorities. It is easy to get caught up in the idea of doing everything perfectly. Particularly when it comes to dementia, many caregivers try to go above and beyond what is required. While this is a noble thing, it can often lead to burnout. Try to think about what is absolutely necessary and what can be modified. It is crucial to take time to care for yourself to ensure your own well-being. Think about whether there are breaks that you can take from caregiving such as when the home health aide is present. Think about whether others in the family can do certain tasks, even if it may not be done completely to your liking. Are things GOOD ENOUGH?
  3. Know your limits. There are many challenges that come with caregiving, much of which relates to how receptive is the person needing care to accepting help. It is very frustrating to see a family member in need of care but refuse to acknowledge so. It can also be difficult to care for a family member who is overwhelming in their requests for assistance. As a caregiver, think about what you are able and willing to do for them and what you are not. Try to find surrogates to assist with tasks you cannot provide. Communicate your boundaries and alternative solutions to  your relative and stick to what you said. Try to enlist others to back you up such as supportive family members or your relative’s healthcare providers. Being clear about what you will and will not do will put the loved one in a position to make choices related to their care.
  4. Banish the guilt. Feelings of guilt go hand-in-hand with caregiving. It can be helpful to remember that these feelings are normal in these very trying situations. It is important to remember, just as there is no such thing as a perfect parent, there is no such thing as a perfect caregiver. Being “good enough” is what to strive for.
  5. Seek out support. Many caregivers feel that they are all alone and are quite surprised when they come to a support group for the first time to find people in very similar situations as they are. Both the practical advice and emotional support of peers is crucial for successful caregiving. Particularly now, there are more virtual groups meeting on Zoom which actually makes it easier for caregivers because they do not have to travel to get that mutual support.
  6. Stay with your “Why”. Victor Frankel said “If you find any why, you can bear any how.” Powerful words from an Auschwitz survivor. Think about why you are showing up to provide care for your person. It could be for a lofty reason, such as kibbud av v’em or due to tremendous gratitude for what that person did when he or she was well, or it could be for a mundane reason, such as needing a place to live or other monetary concerns.  What matters most is that your why motivates you to continue doing what you are doing.

The care you provide is so important and it takes a lot of work physically and emotionally.  It is my hope that this article helps in evaluating how your caregiving is going and you can take stock both in what is working and what needs to be changed.  Most importantly, there is help out there for you to support you both in practical and emotional ways. May this year be a year of healing for everyone.

 

Adina Segal, LCSW is the Orthodox Jewish Outreach Social Worker at CaringKind, where she provides emotional support to families affected by all forms of dementia. Adina is passionate about helping people thrive through difficulties and has worked with family caregivers over the past 13 years. She may be contacted at asegal@cknyc.org.