Flip Flop, Part II: The MS Patient/Caregiver
Last month, for the entire month, I tended to my frail 81-year-old mother who was very ill with dizziness and nausea. Last month, for the entire month, her doctors couldn’t figure out what was wrong. Her blood and urine tests were normal. Her neurologic exams were unremarkable. She had no slurring, no confusion, no paralysis. And while it hurt me to the marrow to see my mom lie dazed in her bed day in and day out, I wasn’t worried that it was anything particularly serious.
During those five weeks of my mother’s inexplicable malaise, I was able to override my MS disabilities with pure adrenaline, enough to cook and serve my mother her meals, to empty and disinfect her bedside commode, to help her into the car and push her wheelchair into the examining room at her doctor office, to give her sponge baths, to brush her hair, to bring her a basin in which she could rinse off her dentures. Sometimes she would suddenly sit upright with her eyes closed and set her jaw in a fit of silent frustration over not being able to express that what she needed was to be comforted, to have her legs, arms, hands, scalp and face rubbed and caressed. She didn’t have to grasp at the words for that need, I know my mother well enough as do my sisters. I read aloud from a book about James Joyce’s wife, Nora. She loved hearing books read since developing macular degeneration the year before. Once in a while we would wonder aloud what was causing her symptoms and wish the Zofran and meclizine would do a better job of relieving her.
The extra physical activity involved in being my mother’s caregiver made my chronic lumbar pain and leg spasticity immediately ease back on the pain scale from a 6 to a 1. This was indeed a fortunate outcome as it made caring for mom that much easier. It did not, however, change my need for 9 or 10 hours of sleep so I could keep up this lively schedule during the day. When I slept, mom had no one to watch her or to get whatever she might need during the night. I would leave a full glass of water, a bowl of popcorn, another bowl of mixed nuts, and a granola bar on her nightstand before retiring for the night. That way she could eat and drink until I woke up and could tend to her. Fortunately she was able to toilet herself.
During the fifth week of her illness, my sister and I decided to call 911 and have her examined in the ER. A brain MRI and carotid ultrasound had been scheduled that week but we couldn’t see dragging her there as an outpatient, vomiting all the way from our house to the MRI gurney and all over the inside of the machine. She would be better taken care of in a hospital.
In the ER, a CT scan revealed the masses unequivocally. She was immediately diagnosed with stage IV lung cancer. It had started in the lung, the ER doc told us, then spread to the brain, then to the liver and kidney. There were six brain tumors and one of them was causing her dizziness and nausea. We were dumbstruck and grieving. Cancer was the furthest thing from our minds. We were thinking stroke or TIA. That carotid bruit sounded like it might have been the culprit. I thought we’d be looking at some angioplasty and then she’d be good to go. She could come home and get well in time for spring yard clean-up.
But she won’t be coming home. She has maybe six more months. They removed the brain tumor last week that was causing all the trouble and she’s feeling much better now. She’s on the rehab floor of the hospital, cussing at the PTs who come to take her to afternoon therapy. She doesn’t want to do it, it’s too hard. Go away, she says, I’m exhausted. Besides, she tells my sister, what’s the point? What am I getting stronger for? I’m going to die.
Next week she’ll start radiation therapy where the tumor was cut out to make sure it doesn’t grow back. We are hoping that she will be allowed to stay in the hospital throughout the whole 10 treatments, but chances are she’ll be discharged after 5. At this point it is a matter of what Medicare will pay for. We will be scrambling to find a facility near the hospital where she can stay and be transported to the hospital for the remaining 5 treatments.
After she is discharged from the radiation therapy, we will find a nursing facility where she can get 24-hour professional care. My sisters and I agreed that we cannot be her caregivers 24/7 for the amount of time she would need it. If she were in hospice and only had 5 days of life left, then we could swing it, but not for six months. So now it becomes a matter of what Medicaid will pay for, and from what we have learned, it only pays for nursing homes and NOT for a hospice residential facility, which is where we’d like her to be.
At this point it has struck me that every family whose loved one has been diagnosed as terminal has to jump through these hoops. There is no guide book for such things. The red tape is horrendous, it takes an entire team of hospital staff, outside nursing home and hospice care staff to coordinate all of this, and nobody who is supposed to know government policy about what Medicaid covers actually knows jack shit about it. We have been told conflicting things about coverage. We’re not sure whether the nursing home can seize mom’s house since they will take all of her social security check once she enters the home. We have lots of reading up to do about how to protect her house and assets.
Let me put it another way: we’re in hell.
We are all doing internet research when we aren’t at the hospital with mom. We are grieving for our mother, we just want to spend quality time with her and make sure she feels comfortable, pain-free and loved. But we have to wrangle with the health care system and become legal experts. Mom has no will so we have to pull something together for her. We are trying to dole out the tasks among the three of us. For example, I live in mom’s house and I’m paying the utilities and collecting rent from her renter who lives upstairs. Now if my sisters had just graduated from law school and medical school, we’d be good. Since they have not, they research and consult with the hospital people.
We’ll get it figured out. That’s not what we are afraid of, it’ll get worked out. It’s those little gaps in time when our minds slip into the reality that our mother will not be weeding her garden this summer. She will never return home, never see the hostas break ground come spring, never again push her wheelbarrow around the yard picking up brush and dumping it onto the compost pile. Never sit out on the deck with a cup of coffee and a cigarette, gazing at her herb garden and shouting at the woodchucks to get the hell out of her lily beds.
I'll have to settle for memories of those things now. But I don't want memories, I want my mother. I need her still.
Does your employer provide workplace accommodations due to your MS?