In 1999, I fulfilled my 2nd grade promise to take care of my Mom if she ever got sick. From personal experience, Supporting The Caregiver is as important as providing the personal care yourself.
When I talk about that ‘time’ to anyone I generally say it was the worst but also the most precious time in my life.
It took almost a Universal act for me to even know that she was sick in the first place. I was a busy restaurant general manager who worked a minimum 108 hour week. Mom had called leaving a message. I was tired and busy. I didn’t take the time to listen. I could do it later I thought, and, as I headed out of my 2nd floor condo for work I found that the metal stairs had literally been removed from my building. While waiting for maintenance to come replace the stairs they’d opted to fix that particular morning, with nothing else to do, I reluctantly listened to the voicemail. It was long as most of Moms’ were, but the words, “I have brain cancer” broke through my fatigued impatience.
While I know the Family Medical Leave Act was in place back in 1999, when I asked to reduce my hours to a mere 70-80 it was no time at all until I no longer had a job. Because I knew her condition was not going to improve I sought out a position with less responsibility – which also equated to less money. I went from a solid 6-figure income to one-tenth of that. I knew it would be short term, and I could make up the difference after she died. Thankfully, all of her medical care was covered.
Moms’ treatment involved two surgeries followed by radiation and steroids. On the 2nd surgery they nicked one of her facial nerves and she had the appearance of someone who’d had a stroke. The steroids however proved to be a great source of humor. I felt like I was feeding a professional football team. She was constantly hungry. Who better than the Chef/daughter to care for her, right? On one particular morning I had errands to run and I knew she would be ravenous when I got home. I stopped at a fast food place picking up burgers and fries. Truthfully I was worried that she wouldn’t approve. You see, my Mom was one of those prejudice women who judged people on whether they were capable of baking a cake “from scratch” or if they had to use a box. Fast food was looked down upon. The voracious appetite won out over judgement. She was thankful and began wolfing down her food. In the process of the food carnage she managed to not only lose but to also eat a tooth. I can still hear her voice as she said, “I think I just lost a tooth.” She smiled at me and sure enough a tooth was gone. She just kept right on eating.
While I was the mom of two at the time, being the care-giver of someone with brain cancer proved to be just the opposite of what you experience with parenthood as you watch your children grow and develop. I had a front-row seat watching her gradual deterioration.
Initially her treatments were done at Bethesda Naval where I lived. When the medical personnel informed us they had done all they could do, I took her back home to Belhaven, NC, our home. It was at this time that my two siblings and I came up with a plan of care for Mom. Outside caregivers were to be minimal. I would take care of Mom from Sunday night until Friday morning. A caregiver would come in on Fridays and watch Mom until my brother and sister could arrive to care for her together over the weekend. I drove the trip every week for months, as I needed to work Friday and Saturday nights to try to make some headway on my mounting debt.
I spent a great deal of time creating culinary masterpieces for Mom. I tried to pump juices and wheat grass into her. In fact, it was the family joke that I was carting “my grass’ across state lines. I painted her toenails. We looked at old family photos and I tried to be patient as she struggled to remember who people were. We also spent a great amount of time listening to jazz cranked up as loud as the stereo would go due to her hearing issues. I can only imagine what the neighbors thought of us rocking out with my Mom on her death-bed. Additionally, it was comical that every time I went to the store for groceries my Mom handed over $20 no matter what or how much I needed. The situation was made even more surreal by the fact that bats from the attic were getting down into our living area. This death seemed almost something fitting The Twilight Zone.
I should probably add in here that my sister, the eldest in the family, has a Master’s in Administrative Gerontology. While she deals with issues like this on a daily basis, I had never really seen her in ‘professional’ mode.
Every set-back that Mom had I called my sister emotionally frantic for advice. Meg coached me through each regression; the first time I had to wipe for her bathroom visits, the first time I had to give her a bath, transitioning into diapers, and finally putting her into a hospital bed, where she remained until her death instead of HER bed. I wondered why Mom couldn’t regress on the weekends when my sibs were there together. Why was I the one that had to face these difficult changes alone with her? But just like a parent who longs to be there when their child has their firsts, I knew I was right where I needed to be. I wouldn’t have had it any other way. I developed the worst case of insomnia as I was too afraid to go to sleep the whole way in case she needed me.
I was also there when she started seeing and talking to people who were not there; people who had been confirmed to have been dead for years. Talk about a faith affirming experience.
The day I put Mom into that hospital bed she slipped into a coma. My brother and sister then joined us, and together we ‘camped’ out for over a week. We ate a lot of good food, reminisced, wondered why all three of us were single, and if truth be told, we were all having fun. Occasionally, Mom would raise her arms up as if she was hugging someone. I know all three of us tried to get in and ‘steal’ hugs from her. While initially receptive to our physical presence in those hugs, she started to push us away and resist. She was hugging ‘others’ that we could not see.
We took shifts sitting vigil by her bedside all night for days. While her bed was in the living room, my sister and I shared an air mattress built for one on the floor. My little bro took the couch. After six days in a coma my mom rallied. She opened her eyes, weakly spoke to us, spent a little conscious time with each of us, gave us hugs, and held our hands before slipping into her final coma.
At this time we did have hospice nurses who stopped in occasionally for our support. It was explained to us that dying people pick who they want to be in the room with them when they let go and the circumstances. It isn’t like we wanted to speed up the process, but we also didn’t want to be holding her back either. As a family we decided to put a morphine patch on her to help with any pain she might be experiencing, knowing this would slow her breathing down as well. We also decided that we’d all watch a movie together there with her and go to bed like normal with no more vigil. We wanted to give off the illusion to her that everything was normal and that we were going to be OK. We wrapped up the movie, kissed Mom good night, and as my sister and I were trying to squeeze ourselves onto the air mattress, joking and laughing about the ceiling fan falling down on us in our sleep, Mom passed. Just like that. She was only 62.
Not every family can come to agreements on how to care for a family member. Not every family has someone or several family members who can come together to provide care, or respite for the main caregiver. Not every family has an in-house ‘expert’ either. Even so, we were ill prepared for what happened, and if I could speak for my sister, she would have preferred the role of daughter over professional under the circumstances. For us, we wouldn’t have had it any other way. We were brought up to believe that is just what you do for your family. From that first phone call message until the day my Mom left this world 10 long months passed and I was personally almost 100K in debt. Truthfully, I have never financially recovered. It’s one thing to have all the arrangements made for others, and another to be financially set yourself to be able to offer help in the first place.
When my Mom was first diagnosed, unbeknownst to us, she had made all of her burial arrangements. I’m so thankful for that as by the time it actually happened I was too exhausted to deal with it. With all of us in our 30’s, making these plans ahead of time had not occurred to us. I vividly remember walking down the streets in Belhaven from the funeral parlor to her house, with her ashes in a plastic baggy prior to her service! I know – too bizarre right?
Not that all of us that work at Options For Elder Care are orphans we have all had a similar experience. It is from this place of understanding that drives us to care for each of our families….YOUR families, as we would our own. We are an excellent resource in all matters concerning long-term illness, death and dying.
Providing care for long term illness is one of the toughest jobs imaginable. If you have someone in your family bearing the brunt of the care-giving, even if they volunteered or seem to have nothing else obligating them please offer up what assistance you can. Trust me when I say this is an experience you really do not want to miss out on.