Sometimes, I am jealous of Lynn. Isn’t that sick? How could any able-bodied individual who is healthy, independent, productive, able to work and function normally be jealous of someone dependent on someone else for EVERYTHING in his life other than his own thoughts. I must be mentally ill – but there it is; sometimes I get jealous. Just how sick is that? It’s certainly not something I’m proud of, but I decided to share this secret, unattractive side of caregiving with you because I expect other caregivers to have that same emotion.
Let me be absolutely clear before I go any further….I do not envy him. I do not think he has a good life, and I would want to trade places with him for anything. I know he hates being dependent on me. I know it hurts him emotionally to see me tired or in pain or physically ill, but I still need to do it for him. I know he would much rather be going to work every day, feeding himself, taking his own bath, and scratching his own itches. I know he only asks of me what he cannot do for himself and no more. My jealousy is not about his abilities or lack thereof but my need to be cared for. That’s why I get jealous. I want someone to take care of me for a change; no, not just that, I want to be able to put myself first when I’m sick or tired rather than having to ignore how I feel and keep pushing forward. Here’s the base truth—I want to be selfish for a change.
Like being a parent, I committed to that role when I became a full-time caregiver. I ALWAYS put Lynn’s needs ahead of mine, except when doing so might cause more harm than good. For example, if he needs to be moved and I haven’t had a chance to eat anything in hours, and my blood sugar is crashing, then I may leave him where he is, even if he’s a little uncomfortable, till I can go grab a bite of something to keep me from passing out—not a whole meal, just a snack. However, if he’s needy one day because he feels pretty rotten or achy, I’ll put off eating, going to the bathroom, or completing home/work chores until I can get him at least halfway comfortable. I sympathize with his inability to comfort himself, show that concern, and acknowledge that need by tending to him first. He, in turn, tries not to ask for anything he does not need – though sometimes, in my jealous state, I question if he REALLY needs to have a particular action done…again….and again.
Truthfully, the jealousy comes when I’m tired or sick or both. When I have had four ½ hours of sleep the night before, and I’m on the hour 14 since getting up with much still left to be done… when all I want to do is lie down and go to sleep, I become very jealous of the fact that I will make him comfortable and he will immediately fall asleep and nap while I head to the kitchen to prepare meals for the next day or to eat my own dinner or to put in a load of clothes or take a shower or whatever and it will be yet another 2-3 hours before I get to lie down.
I become jealous when I am in pain from my arthritis (which is significant at times). Both hands are painful; I have little strength in them anymore, with swollen knuckles, nodules on the bones, and joints that must not have any lubrication left. I cannot take the usual medications that help reduce the effects of arthritis due to being allergic to shellfish and many of the other ingredients in those remedies, so I take four Advil, usually twice a day, to help control it. However, when my hands hurt from the effects of air moving across them, I still need to pull off his clothes, shower him, and then put clothes back on him; I just wish someone else could do it for me.
I sometimes fantasize that I’ll get injured and can’t do his care for a while, and I’ll have an excuse to take care of myself. But in the next thought, I reminded myself that there would be pain and it would not be a vacation. I guess what I need is respite care. However, that’s easier said than done. Respite care is not paid by insurance, so if I had obtained it, the money would have to come from somewhere. If I saved enough for respite, then I couldn’t afford to go away, and if I didn’t, I would be home, and he would need my help, so that’s not much of a realistic option.
Before I go further, let me clarify so you do not get the wrong idea. I do have people who come help me a lot with Lynn–family members and friends; however, I have never, not even when he was in the hospital, actually been away from giving him care at all for even one day. I always get him up, take him to the bathroom, get him dressed, give him his medications, fix his breakfast, and put him to bed for a rest before I go anywhere. Then, at the end of the day, I do his bath, get him redressed, and settle into his chair for the night (he sleeps in his wheelchair so he can use his peddler if his legs get stiff). Therefore, I ALWAYS do the heavy, more difficult stuff and always sacrifice my sleep to get everything needed. So that’s why I’m jealous. I envy those who can go away for a night, go to bed and stay there if they are sick, and decide they have had enough that day and leave the rest till morning.
I don’t like throwing these pity parties, though. I know that our lives are blessed. God has given me the strength and stamina needed to do all I have to do. I still am healthy and have many people I can call on if needed for a few hours. Many caregivers are not that fortunate and many people with MS are not fortunate to have others who will care for them in the way they need their care delivered. Therefore, I try to always shake off the jealous feelings when they surface and focus on how fortunate we are. It works most days…that and I go take a nap. Naps are a great healing tool. Maybe I need one now…..
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC, and has been reposted with permission.
