The alarm goes off. I am dreaming of our trip to Antarctica. We have seen whales, leopard seals, and so many wondrous birds. Today we are taking the Zodiacs to shore and walking over the glacier to the Emperor Penguin colony. I am so excited I reach over to poke my husband, Eric, making sure he's awake because he's such a heavy sleeper. But I guess he's as excited as I am because he's not there.
I open my eyes and confusion envelopes me. Where am I? This isn't our cabin on the cruise ship. This is my bedroom at home. Suddenly I realize it was all a dream. No trip to Antarctica. No safari in Africa. Scuba diving off the Great Barrier Reef? Trekking in New Zealand? Machu Picchu? Nope, dream on. Just never-ending trips to the doctors' offices.
I want to put my pillow over my head and go back to sleep. I am so depressed I would like to sleep for the rest of my life. I'm taking antidepressants and I'm talking with a counselor, but sometimes it all just seems too much. Why us? Why can't we be that happy retired couple doing all the fun things our friends are doing? Sometimes I read a cheery Christmas newsletter and it's all I can do to keep from crying. Yes, I'm glad they are having fun; I don't begrudge them that. But I sure do envy them and wish we could join in. Why are we the couple stuck with an autoimmune disease?
The snooze alarm goes off and I resist hitting it again. I drag myself out of bed, get dressed, and go downstairs to help Eric. We no longer share a bed because he can't get up the stairs. He's in a hospital bed in what was my study. I'm not telling him this, but he sleeps so poorly that I am glad to have an excuse to sleep in another room. When he is in a lot of pain he will ring me with the cordless door bell and I will stumble groggily down the stairs to help him. Really, there is nothing I can do to relieve his pain, but I keep him company, which maybe helps a little.
OK, get it together. I can't show Eric how crappy I feel. Think of something pleasant. Think a happy thought. I got it. That was a great dinner Bonnie made for us last night. Once a week, she makes dinner for us and her husband drives her over to deliver it. How amazing is that? And since yesterday was Tuesday, today is Wednesday; piano lesson day. Yea! We pay a person to stay with Eric for four hours every Wednesday so I can go to my lesson and out to lunch. Let's see, I am meeting Joy today. That's gonna be fun. OK, this will be a great day.
“Good morning, Eric. How was your night?” He's usually awake and waiting for me. I'd like to sleep in and he would like to get up earlier so we compromise somewhere in the middle.
“Not bad. How about you?”
“Oh, I'm good. I had a great dream about taking a cruise to see the Emperor Penguins. Our red down jackets kept us so nice and warm. It was amazing.”
He gives me his lovely smile and says, “Next time for sure.”
Eric has an autoimmune disease, not Multiple Sclerosis, but close enough. He's in a power chair and needs help with many of his “activities of daily living.” You know, things like getting dressed, getting out of bed, going to the bathroom, and taking a shower. It takes two hours, more or less, to be ready for the day.
Friends don't understand and they don't want to modify their plans. “No, Gwen, I can't meet you for a hike at 8:00AM. How about we do a shorter one? No? OK, well, have a good time.” Skiing? “I know the snow reports are great, but I can't be gone an entire day.” Going to the San Juans for the weekend? “Wow, it really would be fun, but, really, I can't go. I'd have to hire someone to stay with Eric, and it's $350 a night. No, he can't stay by himself for even one night.” Our friends have their own lives to live and they drift away. I feel resentful.
Beside helping Eric, morning, evening, and all through the day, there are the chores around the house that he can't do any more. Taking out the garbage, for instance. That is NOT my job, but I have to do it.
Mowing the lawn. NOT my job either. We have an electric mower, but the stupid grass bag keeps falling off. I go inside and ask Eric about it and he has the nerve to say, “Well, I never had that trouble.”
“Come out and show me how it works,” I snap back. Even after he gives me instructions, in great detail, it still falls off.
“Well, there are two solutions as I see it. You can buy a new lawn mower or get yard service.”
I laugh and say, “That is only one solution.” I really do love this guy.
It's all I can do to keep up with the place. I feel angry and unappreciated. And did I mention guilty? I feel so guilty for having these feelings. I know Eric would do it if he could. I'm not in a wheelchair. I don't have pain, I haven't had to give up my independence. But I'm not having any fun. I hate myself for feeling like this.
I am so stressed out and impatient, I sometimes literally have to count to ten before responding to Eric. Not his fault. I know. Still, I am not having any fun. I haven't done any of the things we used to do together because I don't want him to feel bad that he can't participate anymore. Finally, I decide rather than exploding and being no use to anybody, I ask him if he would be alright if I went kayaking for a little while. “Sure,” he says, “no point in us both being miserable.” Oh my god, I love this man.
“How's Eric doing?” friends ask. Let's see, a brief summary or more detail, depending on whose asking. And what about me? I think. “Take care of yourself. It's really important,” I'm told, kindly. What does that even mean? And weren't you going to come and take Eric to the pub? Weren't you going to go for a walk with him so I could have a little time to myself?” I think. Good intentions, no follow through. Doesn't do me much good. Sometimes I hate myself. I'm such a bitch.
I am trying really hard to adapt to our new life, to be a loving wife and outstanding caregiver. I have chosen to stay with Eric and I want us to be happy. I go to the annual Care Givers Symposium which covers both the practical day to day assistance and the “taking care of yourself” stuff. I have attended the six-week class, “Powerful Tools for Caregivers” where we made action plans to set reasonable goals to do something for ourselves each week. I have read several books by caregivers describing how they cope, but of course, most of them have the money to hire lots of help. I recently participated in a couple of webinars for caregivers put on by the Can-Do MS organization. The only advise I hadn't heard before was directed to the people with MS. They need to make sure we, their partners, are getting the care and support we need so we don't burn out. Please, send us out to play. Then the time we take for ourselves would be even more rejuvenating because it would be guilt free. If I'm not happy, no one is.
Patience; where do I get some? Resilience; please write me a prescription. Flexibility; an IV should do nicely. These really aren't my inborn personality traits and yet the MS Society keeps touting them. I like to plan ahead and have everything on the calendar. And yet, I am the one to convince Eric that it is OK to make a social engagement and then cancel it. An autoimmune disease is so unpredictable that rescheduling is the name of the game.
Mindfulness Meditation is the current fad for improving one's mental health. I took a ten-week class. I think it would helpful if I had the time for daily practice. It advises you to be kind to yourself. Treat yourself like you would a good friend. I really do try, but when I give myself a compliment it always sounds sarcastic. I use the meditation when I go to bed and it helps get my cesspool mind to shut up and be still so I can fall asleep.
Best of all, I attend a monthly support group for the partners of people with MS. We call ourselves Care Partners, because we include spouses, partners, parents, siblings, friends; anyone who loves and cares for a person with MS. Sometimes we have speakers, but most often we talk among ourselves. We can ask questions about anything, from the most detailed, intimate care giving issue, to which restaurants are wheelchair friendly. If I am in a bad mood and need to complain about my week, I get support from people who really understand. We share our troubles and offer suggestions. We laugh and cry together. And we become friends.
I find that having something to look forward to is always helpful. It helps to get my mind out of the tedium of the moment. Since Eric and I can't do all the fun outdoors stuff anymore, we have started going to concerts. It was hard at first to get him to leave the security of our home because so many things can go wrong. So I buy the tickets and then give him the choice. “Come with me or stay home. I hope you come with me; it will be more fun. The tickets are already paid for.” Just a little pressure there. We go and have a great time, usually. Next week we are going to hear John Baptist. I keep that in my mind. I know that afterward he will say, “You were right, Honey. That was fun.” Something to look forward to.
And the biggest cosmic joke of all? I have to be cheerful. Eric was always the one who could cheer me up with a quick-witted one-liner. Now it's up to me. Wow, talk about hard and unfair. Not that I am doing a very good job of being happy. On a scale of suicidal to Pollyanna, I definitely tip to the left. The inside of my head is negatively charged, swirling with anxiety, worry, criticism and depression.
Eric and I have been married thirty years. We did everything together. It is as if we are two plants in one pot; our roots are entwined. It never crossed my mind to leave when he got sick. But sometimes it helps to remind myself that this is my choice. I choose to stay and help him. He is my one-and-only and I couldn't possibly live happily without him.
But sometimes I would really like a break. Wow, what a selfish thought. How about we both take a break? Maybe we can slip into a parallel universe where we are that happy, active couple living the lives we thought we would have. Just for a couple of days. A week maybe. A month? Who am I kidding? We won't be coming back.
Author: Laura Nicol
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