Aging, Illness, and Care Giving: We Are Not Prepared

Humans are living longer. While this sounds like a victory on the surface, we as a society are not ready to cope with the blatant needs and emotional upheaval that comes with caring for an older population.

According to the National Institute of Aging, caregivers (adult children caring for their parents or parents caring for ill children) have their lifespan shortened between 4–to 8 years.

Caring for a loved one with an illness is an emotionally taxing, expensive endeavor and we do not have systems in place to support caregivers. Yet many of us rise to the call because economically there is no choice or nursing homes do not fit into our cultural norms.

As a person who is a secondary caregiver to a grandmother with Alzheimer's, I’d like to share areas where being better prepared might help you if you find yourself caring for an aging loved one.

Zero Funeral Preparations

It is not easy to plan for a loved one’s passing. It’s unbearable to think of your loved one not being here. But death is guaranteed along with the high cost of arrangements. The first thing the Reverend from hospice urged us to do was create a fund for my grandmother’s funeral. We all contribute to the funds and we have arrangements set up with a local funeral home. It was very difficult for my mom to do but I detached myself a bit to get it set up. You set it up once and you can put it out of your mind.

Lack of Legal Documents

I come from a multicultural background, and lawyers were seen as a luxury only obtained in the most pressing of situations, (injury/lawsuits, etc.) The truth is everyone should have a family lawyer they can reach out to when legal documents are needed, and you will need them. Familiarize yourself with Power of Attorney documents ASAP. This is a document that allows a designated person to make decisions on your behalf. We were unable to have the document made for my grandma, (a person must be of sound mind,) but I already have Power of Attorney forms for my parents. Should anything happen to me, my sister knows she is to go and establish herself as POA for our parents. Medical Directives, Advanced Directives, and DNR or Do-Not-Resuscitate forms need to be filled out and discussed. We have a DNR for my grandma but we, unfortunately, don't have the other forms filled out. No one in my family has forms like this because, well the subject matter is overwhelming.

Ignorance About the Family Dynamics

There has been a number of problems when it comes to my uncles, aunts, and cousins helping with my grandmother. My mother and I have taken it personally that there has been little help from them. To be honest, it’s us not being realistic about the family. My grandmother has lived with us for over 20 years. My mother has been the primary helper for my grandmother in terms of taking her to doctor appointments, room & board, food, etc. When my uncles, aunts, and cousins came here from Colombia, they did not take care of my grandmother as we did. It only makes sense that as she ages, we would be the primary caregivers. We sometimes expect death and illness to cause these great shifts in personality and family dynamics. While that is the case sometimes, more often than not it is business as usual. My advice is, don’t place unfounded expectations on others but be pleasantly surprised if they step up.

Ignorance About the Illness

I knew of dementia and Alzheimer's before my grandmother got sick, well, I knew it existed and overall what it did. I had no idea, about the symptoms, things to combat the decline, things to prepare for, therapies to mitigate symptoms, etc. Google, YouTube, Reddit, and Instagram have all become my best teachers and informers. I learned about how certain Psych meds can alleviate symptoms of aggression. I learned about doctors who specialize in geriatric care. I learned about the benefits of light, music, animal, and textile therapies. Do your research! There is always new research and medical advancements every day. What you learn can greatly help your loved one and you.

Ignorance Of the Medical System

In my personal opinion, I believe the shortened life span for caregivers is partly due to the stress of navigating the medical health system. Learning about Medicare, and Medicaid, what they cover and what they don’t is exhausting but necessary. Your loved one will have a case manager, get in contact with them pronto, and make your presence known. Ask them questions and let them know your loved one has support and a voice. Hospice for us was a four-letter word with a very limited understanding of what the program provides and does. If the program is reaching out to you to provide services, do some research and gain some first-person accounts from forums or support groups. We went into the program blindly and more information on what to expect would’ve benefited us tremendously.

Lack of Self-Care

You can not pour from an empty cup, I repeat you can not pour from an empty cup. This will be one of the hardest things you will do in life. The stress, the grief, and the emotional upheaval are so taxing and all-consuming at times. You may need a support group or a therapist. You need to still carve out time for yourself, for joy, and for an exploration of self. You are a caregiver but that is not your only identity. I know that this is easier said than done, some people don't have insurance to find therapy, or loved ones/friends to lean on. But I urge you to find something, even if it's looking at cute animals every day to mitigate stress.

These are just a handful of lessons I've learned in providing care for my grandmother. It’s not easy. I've made many mistakes. We are privileged because my immediate family relies on each other, and my grandmother has appropriate insurance. I know this situation is so hard and taxing. But if you find yourself in a similar situation, know you are not alone, and there exists a community of people who’ve been thru it or are living it who can offer help and support.