Whether you had suspicions about your family member’s health or if a diagnosis came suddenly, you may now find yourself in a caregiver role. This transition frequently happens quickly, leaving many caregivers feeling underprepared. Here are some tips regarding important details you won’t want to forget, and how best to incorporate this change in both your and your family member’s lives.
1. Make Sure You Are Documented In Your Loved One’s Medical Records
According to a 2018 report on family caregiving conducted by the National Academies of Sciences, Engineering and Medicine, caregivers for older adults are often times marginalized by the health care system. “Caregivers are, on the one hand, heavily relied upon but on the other hand overlooked,” explained Richard Schulz, professor of psychiatry at the University of Pittsburgh and chair of the panel that crafted the report.
Schulz recommends that the first essential step that must be taken is ensuring the caregiver is present on all records. In some states in the U.S., they have passed versions of the Caregiver Advise, Record, Enable (CARE) Act, which insists that information regarding family caregivers be included in hospital medical records. However, this is not routine across the nation. In order to best advocate for your loved one, you must ensure at every doctor’s appointment that your name and phone number are listed as the primary caregiver, and that you will be contact in any kind of emergency. Without this step, should something happen, it may be very difficult for you to be as present and involved as your friend or family member might have wished.
2. Get Training For Any Medical Tasks You Might Now Be Responsible For
There is a long list of potential medical tasks that you may be asked to conduct while caring for your loved one. Despite your work experience or history in the medical field, or lack thereof, you may now be asked to dress wounds, change catheters, administer medications, monitor side effects, and much more. This can not only be incredibly overwhelming, but jumping right into performing these tasks without training or guidance can also be immensely dangerous.
Despite the CARE Act calling for hospital-lead trainings for caregivers, this is not a consistent, nationwide policy. Although you may find a lot of helpful information online, the safest and most effective way to learn is through hands-on instruction. Speak with your loved one’s doctor, or reach out to hospital, rehab, or home health staff and ask for help in understanding what is expected of you and how to properly conduct these medical tasks.
3. Work Your Caregiving Duties Around Your Schedule
This situation is not ideal. It never is. You may still work full time, have young children that still need daily help and care, or other responsibilities that simply cannot be put on hold. Before you take on everything and jump into caring for your loved one, consider your schedule. If you are, for example, caring for a parent that will need help in the morning with breakfast and getting dressed, but you also work early morning shifts, then it might be time to discuss a rotating schedule with other family members, or getting part-time help while you’re away at work. The unrealistic expectations that we put on ourselves can get in the way of what your loved one really needs, and can put you as the caregiver at risk of emotional and financial burnout. However, whether it’s fair or not, the care of your loved one is in your hands. That makes it your responsibility to speak with your doctors, nurses or even social workers to discuss what is feasible and what you may need help with.
4. Gather Your Village
Being a caregiver is not easy work, but despite how it may seem, you don’t have to do it alone. “It’s not at all clear where families should turn when they get a diagnosis,” explained Laura Gitlin, director of the Center for Innovative Care in Aging at Johns Hopkins University School of Nursing. “No one tells them who they should contact or which resources might be most helpful.”
There are endless resources and groups in local communities that can offer emotional support and serve as a great way to connect with others going through the same situation you are. Local Area Agencies on Aging can offer guidance on accessing certain services, independent living centers will have resources and information about helping people with disabilities, and larger disease-focused organizations like the Alzheimer’s Association can be an incredible online tool for information. You can also use the government’s online tool, Eldercare Locator, to find other local groups that may be able to offer some help.
5. Accept What You Can’t Change And Celebrate The Good Moments
Caregivers frequently struggle to hold onto the relationship that used to exist between themselves and their loved one that they care for. As time passes, your caregiver role surpasses all others: wife, son, sibling, friend. Due to the severity of Alzheimer’s and dementia, and how a person can seemingly loose so much of themselves to this disease, caregivers struggle to hold onto their purpose and maintain that same value in the relationship.
However, despite the pain and difficulties that will come, caregiving can be an incredibly rewarding journey. Being a caregiver to someone you love can open the doors for increased closeness. Just because your relationship may look different now, and your conversations may be shorter or more sporadic, you can still build beautiful memories with this person. It has been said before that patients with Alzheimer’s or dementia may act like children. While this comparison may seem unkind to some, a recent study shows that the brains of Alzheimer’s patients show striking similarities to that of immature brains. Lean into this trait and share the wonders of the world to the fresh eyes of your loved one who may now be in the right place to fully appreciate Earth’s beauty.
There is no set way to care for your loved ones, and every situation is different just as every patient is different. Find what works best for you, your family, and your loved one. Try to focus on what you still have with your loved one, instead of what the disease has taken away. It may be difficult at times, but some days all you can do is focus on the positive and hope for a better tomorrow.