My mom is from a large family. Seven kids total with three boys and four girls. They were kids in the ’40s and ’50s in the rural Midwest. Social outings always involved family, as did any type of crisis. Family arrived with the right farm equipment, casserole and Jell-O salad or supply of manual labor to tackle whatever the issue.
Naturally, when presented with the failing health of my grandmother, my mom and her sisters took charge. They were determined to care for Grandma in the farmhouse she had lived in for more than 60 years. Grandma had cancer and her final months were long and unpleasant. One aunt moved in with her and with the help of a home health nurse, managed most needs. I don’t know all the details, but I do know Grandma passed in her bed with my aunt nearby.
I wonder when my turn will come. Will I be called upon to provide someone with the end-of-life care that my mom and her siblings graciously provided? The topic is one that people would rather avoid thinking about. With proper knowledge, however, end-of-life care can provide support and comfort to improve quality of life for patients as well as their loved ones.
The National Institute on Aging writes that care provided to a loved one at end-of-life often involves a team and covers multiple needs:
- Physical comfort
- Mental and emotional needs
- Spiritual issues
- Practical tasks.
You may be intimidated when you start to break down these four areas because the tasks involved are great. From pain management and digestive problems to the practical tasks of estate planning and saying last goodbyes, resources abound to provide direction. Most importantly, you should gather input from the person receiving care. Knowing what they prefer in advance lessens the stress of making those decisions – especially if your loved one cannot communicate clearly or at all.
It also is important to talk to the physician in charge as well as the personal caregiver if that is not you. Ask the doctor:
What should we expect? Why are we pursuing this type of treatment and what are the effects anticipated? Will the treatment cause discomfort or reduce pain and suffering?
If there are other caregivers, ask them how they are doing and whether they need a rest? It’s important for caregivers to take care of themselves to remain effective in their role. You might ask if they need help with personal issues like chores around the house, errands or meal planning and preparation.
According to the Banner Alzheimer’s Institute (BAI), seven out of 10 Alzheimer’s patients are cared for in the home. This causes continued stress, depression and physical medical problems for those who are providing personal care. BAI offers support groups and experienced care teams to help caregivers manage those stresses (Also see: BAI webinar series for caregivers).
In some situations, it’s not physically possible to care for a loved one in the home. More and more people choose inpatient hospice care or already live in a nursing home prior to end of life. Regardless of where a person chooses to spend that time, the family must consider the loved one’s health, the appropriateness of the facility or home, the skill levels of friends and family available to help and the costs.
Your loved one may have other concerns including dementia that require you to ask additional questions when making decisions for end-of-life care.
Some of my nurse friends have experience caring for and being with someone at the end of their life. My friends considered it an honor – an honor to do all they could to help someone pass gracefully, peacefully and as comfortably as possible from this world. Most people probably have little experience in that type of a situation. When placed in that situation, though, you must realize death is a natural occurrence. There will be many choices to make. You always should ask for help, so you can rise to the challenge.
Also read: What is palliative care?