A caregiver dispensing meds to a loved one

Brief overview of caregiving:

Launching into the maze of caregiving is like entering a realm where compassion meets responsibility. Whether you find yourself in the role due to familial ties or professional obligations, caregiving is essentially the art of lending a helping hand in the tapestry of another person's daily life. Picture this: whipping up meals that are not just nourishment for the body but also the soul, ensuring medications are dispensed like clockwork, chauffeuring to and from doctors' appointments, and maintaining a household that's a sanctuary of comfort. While family members often find themselves orchestrating the delicate dance of shower routines and morning-to-night transitions, caregivers too can do these intimate tasks. Caregiving is not merely a list of chores; it's a symphony of care and commitment, a narrative woven with threads of compassion and duty.

Importance of addressing the emotional toll on caregivers:

Caregivers can take on this undertaking with little to no time off. Personal time is minimum, or can be nonexistent. The caregiver taking time for themself is foreign and rough, to say the least, on the guardian. A caregiver will feel the death differently than others. A typical day can start at 6 am and end at 10 pm. The next day, there will be a repeat of the same schedule. Planning a trip to the doctor could be more time away from home. After the death of a loved one, the caregiver can miss the daily tasks and business of caregiving. The guardian can miss being with the deceased person at the same time. Friends and family of the custodian can give support by being there and helping them express their grief. The grief can become a rollercoaster of emotions and feelings for the caregiver. They can become withdrawn and depressed with the passing of a loved one or client.

Preparing for the Inevitable:

It’s always a good idea to have open communication about end-of-life decisions When the end is close, the family, healthcare workers, and caregiver must communicate clearly. The client should be included in this conversation, even if only by a living will. But the care in the last days and hours should be according to the client's and family's wishes. Only some people always get what they want. Most clients want to die at home, but families often get scared at the end and call the ambulance to take them to the hospital. Talk with healthcare about those hours when the client is declining and the time is close. What tasks can comfort the ones at the house with the client to make that time comfortable for everyone so the client’s wish of being at home to die happens instead of in the hospital emergency department? It might help to have a second person come and be with the caregiver closer to time. Or maybe the whole family can sit around and talk together, and remember how things were. These tasks can take the pressure off of any one person, to ensure the unwished for transfer to the hospital does not happen.

Prioritizing Mental and Physical Health:

Secondary caregiver attending a doctor’s appointment

When the caregiver needs a break for mental or physical health, a family member or friend should be prepped and ready to take over caring for the client. Plan who this would be by having the chosen person spend time with a caregiver during a typical day, and a day of going to the doctor's office, or while having the visiting nurse check on the client. Other ways of giving time off include respite care at a nursing facility where the whole family can have time off to care for the client. A vacation away or time to take care of themselves, is another option.

Understanding the grieving process:

Let’s refer to the Kubler-Ross model (Denial, Anger, Bargaining, Depression, Acceptance). No matter who the loss happens to, or how the loss happens, everyone goes through the stages of grief: denial, anger, bargaining, depression, and acceptance. Everyone does it differently, and at a different pace. Let the caregiver take their time and go through the process. Refrain from pointing out where they are in the process though, it only frustrates the caregiver and makes them feel guilty for having to take time for themselves.

It is always good to have ways to say “I am missing them” without saying it. My family had a rough time after my mom passed away. We had a candle, and when one of us was missing mom, we would light the candle. Then we would talk about how mom would do this specific part of the holiday, or special day we were celebrating. It helped us feel connected without feeling pressured to talk about her passing.

Here are a few more things to think about:

Questions need answering before end-of-life care, and the client needs to be able to answer questions appropriately.

Who is the POA or guardian?
When is the POA or guardian called for guidance?
Who will be the caregiver?- A family member or paid help? How will we hire a caregiver to care for our family member? How much do we have available to spend per month? Are we going to do a shift of caregiving to limit the expenses and ease the need to hire another caregiver?
Who is responsible for buying groceries and other household items? What day is this going to occur? Who is responsible for making the list of what is needed?
Bills from the house will need to be sent to the POA or guardian.

End-of-life requests

The client requests a DNR does not want to be resuscitated. Is there a time when the family or client would want this done? Who decides when the problem arises and it is an immediate need?
When do we want antibiotics given? The client has requested that if they are incapacitated and unable to enjoy life, they let nature take its course. Would we go against the client’s request?
When do we want surgery done? Cancer?