Caregiver Perspective: Screaming on the Inside
Please do not read this if you are not a caregiver. I do not want to cause anyone with MS to feel guilt or pain because you cannot help having this horrible, horrible condition if you have secondary or primary progressive MS. If you don’t have this type of MS, you don’t want to imagine it and hopefully you will never be where we are in dealing with it. But this is our reality. This is written for those who spend every day of their lives trying to make it better for those who have been ravaged by this disease.
Here’s what I am screaming on the inside….
I JUST CAN’T TAKE THIS ANYMORE. I WANT TO QUIT. I WANT TO WALK AWAY AND NEVER LOOK BACK. I JUST CAN’T FACE ANOTHER NIGHT OF NO SLEEP; ANOTHER DAY OF PAIN; ANOTHER MINUTE OF FRUSTRATION AND DISAPPOINTMENT; ANOTHER FAILURE.
Yes, failure. My husband cannot do anything for himself except think and feel. Everything he needs, I do. If he hurts, he looks to me to fix it. If he’s tired, I put him to bed (which is a 30 minute process). If he needs to eat, I prepare it, cook it, feed him, and clean up afterwards. If he needs to empty his bowels or his bladder, I do it for him. If he has an itch, I scratch it. If his leg is stiff, I move it. If he needs anything; anything at all; he looks to me.
If what I do doesn’t make him feel better, then I have failed. As irrational as that is, I see him suffering and it tears me up inside. I know that if my efforts are not good enough, he will die. Sure, he’s going to die anyway one day; we all do, but if I don’t do all I can for him, he’ll die sooner than he should. I hold his life in my hands. If I don’t make sure he gets good nutrition and hydration, then he will have skin breakdown; be more likely to get sick; develop secondary complications and die from those. He got a urinary tract infection once and was in the ICU for three months. He changed medication another time; lost his appetite, had to be admitted to the hospital for a feeding tube, coughed it up during a feeding, got pneumonia, and almost ended up on a ventilator. About two months ago, the skin on his buttock got red. I put a bandage on it that irritated it more. I kept trying new things, some of which required tape, and new skin break down occurred. Now his skin remains tender and irritated. His entire buttock is red and sore. I can’t seem to find anything to heal it and so he can’t sit on his cushion as long anymore. Therefore, I am up every hour or two all night long adjusting the pressure in his cushion until I give up and put him in the bed. That buys us three hours at most before his spasticity requires him to get back up and use his peddler to relieve the spasms and we start over. I aim for five hours of sleep a night but in reality it’s less because of the number of times I have to get up to cath him or help him get comfortable.
I feel guilty all the time. Guilty because I resent him interrupting me when I’m trying to get things done. Guilty because I have to say no to my family when they want us to do things with them or for them. Guilty because I can’t give the attention to my job I used to give and I resent not being able to do what I know needs to be done. I feel guilty because I don’t want him to put in an exercise pool in our spare bedroom even though it could very well make him healthier because it will be just another thing for me to do…another task to perform in a day already so full of tasks that I get to bed between 3 and 4 a.m. every night. Guilty because when he calls for help, I grumble. Guilty because in my frustration I share how upset I am and he feels guilty for needing me so much. Guilty because I lie and tell him I’ll only be gone to the store 30 minutes when I know I need to be gone longer. Guilty because I know I’ll never get out of the house if I tell him the truth about how long I’ll be gone because he panics at the thought of what might happen if I’m not there and I know he’ll really be fine till I return.
I feel angry that I need to hire a nursing assistant or someone who can help me take care of him so I can go into work but I can’t because they are too expensive and insurance won’t pay. I’m angry because I want to go into work instead of working from home so I can feel successful and a sense of accomplishment and have others appreciate that I know things and can do things other than providing physical care. Angry that I can’t go to support groups because there is no one who can stay with him so I can do the things I want to do because I use them all for things I have to do. Angry because I’ve put on weight eating to stay awake. I hurt and can’t walk very far due to unconditioned muscles because I can’t take time to work out. I walk from my office to his room from his room to my office; back and forth about fifty times a day but they are short trips so I have no endurance. I could work out if he’s asleep but that’s when I do my job, or take a shower, or do things that I need to do without interruption, or I take a 30 minute nap just to keep going.
I’m scared. I’m scared that I’ll fail and he will die. As difficult as this is, I want him to live. He’s my best friend and I love him. I would be so alone without him. He is my purpose for living now. He is the center of my world and I would be lost without him. I’m afraid my employer will want me to start working onsite again and stop teleworking from home. I’m afraid my arthritis will get so bad I can’t take care of him and can’t afford help. I’m afraid I’ll get really sick and there will be no one to take care of us. I think of all he needs and how much it costs to provide it and I realize I need to work until I die so that my life insurance from work will take care of him when I can’t. I’m afraid of failing him, failing my employer, failing my children, and failing me. I’m afraid.
And yet, I push through it all. I cry in the shower so he can’t hear me. I fuss and cuss in a room away from him to get the anger out. I smile and tell others that we’re doing fine. I always get up when he needs me and I encourage him when he’s down. I sit my alarm for 30 minute naps to keep going; I eat a candy bar for energy (no wonder I have a weight problem), I write my thoughts out to share with others so that I don’t feel alone. Then, I take a deep breath and exhale out the tension. I tell myself, “that’s enough self-pity,” and move on. I find something to amerce myself in and change my focus and I strive to stay in the moment and stop looking at what might be and accept what is.
This is the life of a caregiver whose spouse has end-stage MS. I strive to keep him healthy, alive and encouraged each day and will continue to do this for as long as I can because I care and I love and I hope for a better tomorrow…and will do all I can to prevent a worse one.