Above is a photo of me and my mother, Naomi, on February 1, 2018; my last birthday with her.
By Melody N Monteiro, MA, MSW, LSW
I reflected on this past Mother’s Day with gratitude. Caring for my mom was a good experience with some lessons learned and truths. One truth is that I wish I had more emotional support and another is that I wish we had accepted hospice help sooner. This is why it was on my heart to discuss the acceptance part of caregiving, and how important it is to your healing.
Advocating for yourself and your loved one
I provided the majority of Mommy’s physical care but had no control over the services she actually received. Although I was the primary caregiver, my brother handled the business affairs. My brother did a wonderful job with this; however, I wish I had the voice to speak up regarding decisions being made for my mother’s care. Caregiving takes a village and it is important to involve the person directly providing the caregiving in major decisions. If you are a primary caregiver who is concerned about being heard, know it is ok to say “I have some valuable insight to provide and I would like to be included in the decision making”. Speaking up is so important!
Also, know that it is ok to ask questions if you have concerns about a doctor’s diagnosis or recommendations for care. Many physicians (unless they specialize in gerontology) automatically feel the best constant care can only be obtained in a long-term care facility. Know that home care is absolutely an option!
Use ALL resources available to you
And I mean all! Hospital social workers are an underutilized service that can be a great information source. During my time as a hospital social worker, my job was to make sure families who opted for homecare received all necessary equipment and home care support prior to leaving the hospital. I would also put them in contact with the local Agency on Aging and in some cases Adult Protective Services, which is a great source of support and knowledge. Many people are not aware of the senior support services provided by APS because they feel it is a punitive agency. They actually can be very supportive in assisting with keeping your loved one at home during their final days. Make sure you take advantage of such services and more.
Accepting hospice as a care option
Accepting hospice for my mom was tough. It involves the touchy issue of accepting a terminal diagnosis. This is a choice my family ultimately made for my mom; and the truth is, I wish I had utilized hospice sooner. Let’s unpack this!
Hospice does not always mean “goodbye” is around the corner. It simply means you are shifting your care strategy to end-of-life comfort. Putting mom in hospice was hard but it also provided needed support for my family in my mother’s last days. Hospice is an all-inclusive service that provides medical staff, medication, and even emotional support for yourself and other family members. Sometimes our loved ones accept they will pass even when we won’t. It is important to honor their wishes and realize your top priority is to ensure their comfort. This is why I suggest considering hospice as an option sooner rather than later.
Have those difficult conversations now.
Things you think are simple, like accessing bank accounts to pay final expenses, can be very difficult. Before things progress, it’s important to have conversations about medical power of attorney, finances, and other final plans. During those final months, weeks and days, you will need all of your emotional strength. It will be such a relief to know that these things are already taken care of.
Keep it light, fun, and meaningful
My mom was such a light and maintained her sense of humor until the very end. I can recall many fun moments with my mom as I was caring for her. One day when it became apparent she needed more hands on care, she said to me ‘I don’t like you doing all of this ‘, and I replied, “I don’t want to do this either but you’re stuck with me.” and we both had a laugh. Keeping the light-heartedness and humor of our relationship really helped me get through the tough days. Those moments allowed us to laugh and just be “us” as we were. So keep engaging, communicating, and laughing, even when all they can do is listen. These are the moments you will remember with a smile.
I hope my personal story will lead you to find some peace as you navigate the final stages of your caregiving journey. I hope you choose acceptance and find comfort in the fact that your loved one will soon find their peace.
Melody N Monteiro, MA, MSW, LSW
Continue to follow our caregiving blog series at https://www.drjeanneporterking.com/blog