Flip-Flop: What Happens When an MS Patient Becomes a Caregiver
Two weeks ago, my 81-year-old mother, with whom I live, developed vertigo, nausea, then vomiting. She became progressively worse and I’ve taken her to her doctor twice. Stroke was ruled out right away and positional vertigo was on the table. But her labs have come back abnormal, so there will be more doctor visits and tests. Since it wasn’t an emergency situation, my sisters and I respected our mother’s wish not to take her to the ER and have her admitted to the hospital. She would be more comfortable at home.
I make her meals, give her meclizine for dizziness and Zofran for nausea. I make sure she’s drinking more liquids than she did the day before. I’ve picked up the slack as far as housework, meal preparation and shopping, and paid one of her bills online. Last weekend she needed a bath and a shampoo, but I waited until my sister was free to do it. I can't physically handle doing that for mom. I have Multiple Sclerosis.
Only a year and a half ago I was a married and pampered MSer, doted on by my husband. My life was easy and carefree. He did the shopping and housework. I worked at the computer all day and evening. After he announced one day that this was all going to end, I moved into my mother’s house six blocks away.
I wondered how I was going to do without my husband’s help. Mom and I were at about the same level in our physical limitations, although she was a bit more able than I doing some things. Mom has always been an independent, solitary soul who takes pride in figuring out how to get things done without anybody’s help. She’s a good role model for me. We shared the housework and cooking. I rediscovered my independence and ability to shop and clean in ways that I could handle. I gained confidence in myself, it felt good to be capable and accomplish tasks I didn’t think I could do anymore. Ours was a good partnership. We contributed equally and took care of each other.
Now I do all the cooking, laundry, cleaning, garbage-toting, runs to the pharmacy, grocery shopping, serving mom three meals a day, administering her meds, taking her to the doctor and getting her labs done. And the funny thing is, for the past two weeks I've been up to it. I’ve risen to the challenge.
One cute thing mom has been doing is to treat me like a short order cook, it’s her way of taking care of herself. Yesterday afternoon I approached her bed and asked what her pleasure would be. “I want tomato soup and mac and cheese,” she said resolutely. There was no tomato soup in the house, nor was there any boxed mac and cheese. But there was a can of tomato sauce. Add some milk to that and you’ve got a nice creamy tomato soup. And there was a big block of cheddar cheese, flour, milk, and butter, all the fixings to make a cheese sauce. I struggled to remember how to make a roux and in what order to add the ingredients so the sauce wouldn’t curdle, but gave up and went to the internet for the answer. I soon had a good sauce bubbling on the stove and poured it over some leftover mashed potatoes. Mom loved it.
But today was the game changer. Her condition didn’t change, mine did. I crashed. I had slept for 10 hours, not rising until noon. Mom wakes around 8 or 9, so she was awake for hours without food, without meds. I felt terrible about it and knew I had to set my alarm for 9 a.m. from now on to make sure I get up earlier. The moment I approached her bed she told me what she wanted for breakfast and I scurried into the kitchen before I had even taken my morning meds. My responsibilities didn’t let up until afternoon. Weariness hit me hard around 3 p.m. and I napped until nearly 6. That was another three hours of not checking in on her, something I like to do at least every hour or so. And I had huge grocery shopping to do again. Dreading it, I got in the car and realized I forgot to grab my keys, so I hobbled back inside the house to retrieve them. Back in the car again, I dug through my purse and realized I’d forgotten to pick up the grocery money, so back inside I went. Back in the driver’s seat once again, I dug through my purse for my phone and it wasn’t there. I trudged back and forth between the house and the car two more times before I finally had everything I needed. I was exhausted and weak and feeling overwhelmed. I couldn’t face it alone and called my ex-husband for help, and help he did. I realized that I’d been operating on adrenaline for the past two weeks and now the well was running dry.
Fortunately a friend who lives nearby and my ex-husband have both offered their help if I need it. Juggling my mother’s needs along with my own is a day to day challenge. I never know how either one of us will feel when each day starts.
I’m lucky to have support from family and friends, glad that I’m here to take care of mom and not put her in the hospital, relieved to have been here to comfort her and know her needs and wants better than anyone else could. I worry for her and for myself, but I know we’ll all work together to take care of each other.
How well do people around you understand MS?