Of all the gifts that life has to offer, a loving mother is the greatest of them all.~Unknown
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The following post will be slightly different from our regular content by Ken Meeker as it was inspired by a personal situation that happened to me recently. Over the past 5 months I’ve been caring for my mother in hospice at my home. To say that being a caregiver is a hard and exhausting task is an understatement. Doing so while visually impaired is even more difficult but I’ve learned that despite physical barriers when the need arises we can rise too.
When my mom was brought to my home she was severly malnourished and also in end-stage Alzheimer’s/Dementia. Even though my mom and I had a complicated and messy relationship, it broke my heart to see her so frail and I vowed to make her remaining days as comfortable as possible per her living will.
On Sunday evening, April 30th she died surrounded by her family. Prior to my mom’s death I needed to know what to expect and found an incredible resource on YouTube: Hospice Nurse Julie. Before finding this YouTube Channel I didn’t know there were stages to dying and I felt comforted and less fearful by watching this content.
My last words to my mom were, “We got this,” and with that, she took her final breath. She just quietly slipped away. It was a sacred moment and one I’ll cherish for my remaining days. Sharing our stoies connects us and empowers others to do likewise as this is where we can find strength and resilience. Thank you Ken for letting us catch a glimpse of a most vulnerable time in your life. ~Steph
This article contains subjects that might be triggering for some people. It contains discussions on death, suicide, and loss.
A Mother’s Love
There are few things that every person on this earth will experience. What is peculiar about some of those experiences is that so many people find it nearly impossible to openly talk about them with others. An uncomfortable truth is that every person will eventually pass away.
What happens before or after we die is outside the scope of this article. Faith, belief in an afterlife, and the vast array of differing religious views do not change the reality that our physical bodies do have an expiration date. What makes this topic challenging is the “when” or uncertainty about something permanent and unchangeable.
The greatest gift I ever received in life is the unconditional and uncompromising love from my mother, Donna. I was well into my 30s when I fully recognized how incredible and transformative the gift is. There are far too many people who grow up and go through life without having someone who would never give up on them, stop loving them, or turn their back on them.
For many of the most traumatic and painful moments in my life, the person I could rely on was my mother. 2013 was an extremely difficult year. Toward the end of the summer of that year, a cascade of terrible events culminated in a sudden and traumatic end of a relationship. It was too much to handle, I wanted the hurting to stop, and attempted suicide. Fortunately, I was unsuccessful. With unrelenting thoughts of despair swirling in my mind, I plotted my next attempt, and how this time the likelihood of success would be virtually guaranteed.
Reaching Out For Help
It was at that moment my dog walked up to me and looked me in the eyes just long enough to let my mind wander. Almost instinctively I picked up the phone and called my mom. She lived a 9-hour drive away and it was roughly 7 pm. She could immediately tell something was off and asked if I was okay. The only thing I was able to say is, “can you come out, I need you.”
She didn’t ask what was wrong, it didn’t matter. My mom asked, “do you need me to come now, or can I leave in the morning?” I told her in the morning was fine. The next day she arrived by noon. After staying with me for just over 2 weeks my mom asked, “are you okay, or do you need me to stay longer?” Laughing slightly, I replied that it was safe for her to go home. Not once during the nearly three weeks of her stay did my mom ever ask why I needed her.
When I lost most of my sight in 2014 shortly after relocating to Arizona, once again my mom was there without hesitation. She somehow managed to take the major challenges in stride over the 2 ½ years it took for my health to stabilize. One of the treatments required was an IV PICC line that pumped large amounts of penicillin through my body, 24 hours a day for a 3-week period. This meant changing an IV bag of concentrated penicillin once a day.
My mom had a severe allergy to penicillin, but without hesitation, she changed the small IV bag every day over three separate treatment cycles, each lasting 3 weeks. At the time she was in her late 60s, 5 foot 2 inches tall, and a 2-time breast cancer survivor. She got me safely in and out of doctor appointments, stores, hospitals, and more without complaint or concern for her own well-being.
In 2016, a few months after her sister passed away from cancer my mom was feeling some discomfort in her chest and was fatigued. After multiple tests, we learned breast cancer had returned and metastasized throughout her body. After receiving the news, my mom burst into tears, was unable to speak, and tightly clutched my hand. I plainly asked the oncologist, “how much time do we have?”
The oncologist estimated that with treatment we could reasonably expect 18 months to 3 years, with the disclaimer that no one can ever know for sure how effective treatment will be. I remain grateful for the honesty, candor, and care the oncologist provided my mom and family. I had been in this similar situation with the two prior breast cancer diagnoses my mom had. But this was different; we knew how this would eventually end.
Fortunately, my mom and I had already been living together for some time as she was there to help me recover from my own illness and vision loss. No thought was given to what my responsibility was going forward. I would do everything in my power to ensure that my mom would be able to make the most of the time left.
Several years prior when she received her second breast cancer diagnosis, my mom and I had an uncomfortable conversation about what she wanted to happen with her medical directives and her body if the cancer treatments were ineffective. She had already prepared, and we had gone over her medical directives and wishes.
Making The Most Of Time
Early in the diagnosis, she and I sat again to discuss her wishes and directives. I asked what the things are she wants to do in the time left. In typical style, she was modest and said it was too expensive. It did not matter, and I wanted to know. She relented and said she would love to be able to see and spend time with each of her living sisters. At the time, this meant her traveling to opposite ends of the country. Through an act of kindness that I am eternally grateful for, a friend of mine gifted her enough to cover the cost of both flights so she could enjoy a week with each of her sisters.
Family meant everything to my mom. I made it a priority to have my entire immediate family together for a family picture. On a beautiful early fall day, my mom, 2 brothers, their spouses, their children, and I got together to take a set of photos. They are the only pictures with my mom, her children, their spouses, and her grandchildren together. My mom’s face shines with joy and happiness in those pictures.
A less joyful, yet necessary aspect of end-of-life planning is discussing what someone wants to happen with their body. Because something must be done with it. Since my mom and I had previously discussed certain aspects of end-of-life planning, I knew she wanted to be cremated. It was now time to get to specifics and handle the details.
End Of Life Cost-Saving Option
Something rarely talked about are the costs associated with dying. Frankly, dying can be expensive. A small bit of advice I hope everyone takes is to find out what things cost long before someone might pass away. When a loved one dies, navigating the cost of services is the last thing someone should be focused on. Talking about this stuff beforehand allows loved ones to mourn, grieve, and celebrate those who passed on.
While cremation is certainly less costly than a casket and burial, it still costs money. For many seniors like my mom, they do not have ample savings laying around to cover these costs. This is when I kept my promise to my mom that she did not have to worry about any of these things. All that was needed from her was to communicate her wishes, and I would handle the rest.
Through various research, I came across an organization that partners with medical research organizations to provide donated bodies. Cancer research is one of the categories they handled, so I reached out to them. There was an application process and upon acceptance, this organization would handle the logistics of coordinating with a coroner and research institutions, cremation of remains, and returning those remains to the family.
As strange as it might seem, my mom was very happy to learn they accepted her into the program. It alleviated a significant stressor about what would happen after she passed, and it aligned with her wishes. It also meant that the financial burden would be handled by the organization and not her family.
Dying With Dignity
One evening In December 2017, I was preparing to go somewhere, and for the first time I can ever recall, my mom asked me not to leave or go anywhere. This was alarming. I took a strong position that we needed to go to the emergency room immediately. We arrived at the emergency room by car, and she was immediately admitted. She was in bad shape. The cancer treatments had stopped working and her body was shutting down. It was at this time that some extremely challenging conversations needed to happen.
My mom and I had discussed medically assisted death with dignity. She was terrified of the cancer reaching her brain. Death with dignity was not offered in the state we lived in but was in neighboring California, where one of her living sisters resided.
When I approached the subject with my mom while she was in the hospital, she was initially resistant to wanting to discuss it. As uncomfortable as it was to talk about, the urgency was there, and the most important thing was what she wanted. That required getting it out in the open. She and I spent a few very emotional hours discussing what she wanted to happen. When I left that evening, it was with a promise by her that after she slept on it, she would decide.
The next morning, I arrived at the hospital and my mom communicated her wishes to me with a level of certainty in her voice I rarely heard. As soon as she was discharged and able, she wanted to go out to California and start the process of dying with dignity. Now that her wishes were known, I sprung into action. I communicated with the nursing staff and doctors at the hospital that her priority was to be physically well enough to be discharged so that she could go to her sister’s. I had been prepared to face opposition and was ready to intensely advocate for my mom, but the staff understood and respected my mom’s wishes.
Heading To California
After she was released from the hospital, we spent a few days going through her things. It was incredibly emotional and many, many tears were shed. But not all of them were sad. There were tears of joy and celebration of life. We went through photo albums, her jewelry box, and she told me stories I had never heard before. But the time came when her things were packed, and it was time for the trip to California.
My older brother was going to drive her out with one of his sons since my vision loss no longer permits me to drive. It was a challenging day. We loaded up my brother’s truck and I walked my mom to the passenger door. She embraced me and held on to me as though it was the last time we would embrace. She swelled with tears and could barely speak. I held her and told her confidently, “this is not goodbye, this is not goodbye.” I meant every word. This was not going to be the last time I saw and held my mother. She nodded and gave a slight smile, told me she loved me, and got into the truck.
A few weeks later I received a call from my aunt. She and I were in frequent communication with her keeping me up to date on my mom’s health. On this call, I learned my mom was having respiratory issues, and talking was challenging. I also learned they were starting hospice care. I told my aunt I would be there in a few hours and hung up the phone.
I made a call to a friend who had already agreed to drive me out when the day came that I needed to get out to California. I was packed and we were on the road within an hour. A few hours later we arrived at my aunts’ house where my mom was resting comfortably on the couch. To my complete surprise, she was in the most incredible spirits I could recall. Everything she said to us was meant to bring joy, laughter, and happiness.
My mom made quips about her finally being back to her “modeling weight.” For the record, my mom was beautiful, but never modeled. She joked all it took for people to make a fuss about her was her dying. Even the last words she said were a joke. I had made a comment to my aunt about how we could try slapping each other to stay awake, and my mom calmly and plainly quipped, “you should charge admission.”
Those were the last words my mom uttered. She passed away peacefully the next morning while my aunt and I sat with her. I miss her more than can be expressed. What I learned through caring for her, end-of-life planning, and being present with her is that we waste too much time on things that ultimately don’t matter.
Talking About Death
We will all die one day. It’s not morose, it’s a fact. We can’t stop it. So, what can we do? First, make sure to tell the people you care about how you feel. SAY it to them. Be intentional and tell them, “I love you,” “I care about you.” “You are important to me.” Since my mom’s passing, I have made a conscious effort to express my feelings and be open with others about how I feel.
Loss, and especially death, are things people don’t want to talk about because it makes it real. We only cause ourselves additional harm, lose precious time, and are fooling ourselves when we avoid openly talking about how we want to be remembered. It puts a significant burden on our loved ones when we do not communicate and expressly tell them what our wishes are for when we die. It makes it so that they have less capacity to mourn, celebrate, and honor us.
Nothing can make the pain and heartache associated with death any less intense or severe. It is something only time can lessen. But one of the best ways to show you love people is by handling the things that can be done while you are still here. Yes, these conversations feel awkward, but we need to get more comfortable talking about death because it is something that unites each human on this planet. Of course, we want to have as much time with each other as possible, and having these conversations does nothing to impede that. I think you will find it brings you closer together.
Ultimately, time is a currency we cannot obtain more of. When we learned that my mom would have only 18 months – 3 years to live, I realized how valuable time really is. Spend time with people who bring joy to your life. Remove toxic relationships and surround yourself with people who lift your spirit, who believe in you, and who will be there when you need them most. The most precious thing we can ever give someone is our time. Spend wisely.
Note: If you or someone you know is struggling and might be considering harming themselves, please contact the Suicide and Crisis Lifeline by calling or texting 988 on any phone.
By: Ken Meeker CPC
About The Author
Ken Meeker is a Certified Professional Coach, owner of Vitality Career Coaching LLC, and member of the NCDA. He specializes in executive and career coaching with a special emphasis on differently-abled individuals who want to return to work. He is a DEI consultant, Public Speaker, and advocates for inclusivity of marginalized groups. Ken is a 2021-2022 AFB Blind Leadership Development Program Fellow and will serve as a Mentor for the 2022-2023 program. You can connect with him on LinkedIn.com/in/kenmeekeraz, firstname.lastname@example.org or visit www.vitalitycareercoaching.com
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- Adult son with his arms around his mom share a laugh.
- A smiling young Asian man is hugging his mother from behind.
- A female cancer patient is lying in a hospital bed looking out of a window.
- Text “In Loving Memory” is carved into stone.
- Author photo: A professional waist shot of Ken a white man with arms folded across his chest. He has short dark hair and eyeglasses.