respite

Hey Sweetie! Can you Come Here a Second?

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Posted on July 26, 2011 by mscaregiverdonna

I yell back, “Just a minute.  Let me finish this sentence.”  Then I try to recollect my thoughts and finish up whatever thought I was in the middle of (I work at my job from home using an internet connection) and see what he needs.  Often it’s something simple like “scratch my leg” or “hand me the remote.”  Other times it’s more time-consuming, “I need to go to bed.” or “It’s time to cath me.”  Most of the time, the one thing turns into two or three and it’ 5 minutes or longer (often longer) before I get back to that sentence.  Seven out of ten times, before I get settled, I’m called back for something he forgot.

How many times a day does your MS patient call you for help?  If I have slept the night before I tolerate it pretty well.  If I haven’t, then I do a lot of mumbling when I get the “call.”  I admit I get frustrated a lot. I have to remind him often that I’m at work and need to get back to my desk.  The interruptions cause me to regularly work till after 9 pm trying to get in a full day.  I’m very fortunate that I have that flexibility.  I’m sure many of you do not.  My heart goes out to you because it’s a terrible conflict to have to decide which need to serve–caring for your spouse or bringing in the money to care for you both.  The reality is you have to work to eat, but it’s hard to manage it all. 

How do you afford it? You can’t afford to work, but I expect you have to pay someone to stay with your patient. That can’t be cheap.  I know one day I’ll have to go back to my office at work and be there instead of here. I dread that day because I know he will have a difficult time adjusting to being taken somewhere to stay all day (if there is such a place that provides that level of daycare) or having someone unknown come here to visit. I find myself thinking about that at times and have to turn it off and say a prayer of thanksgiving that I’m still working from home.

Being here, though, is both a blessing and a curse.  Sometimes I think if I hear, “Hey Sweetie” one more time I’m burst out crying in frustration.  I’ve done that a couple of times.  He understands that sometimes it’s just too much and I need to get away to go to the store but even when I do that, and I can’t hear, “Hey Sweetie,” I often get a call on my cell to ask when I’m coming back because he needs….

So to all, you caregivers out there who are on 24/7, here’s to you and your Sweetie.  Hang in there.  Take a deep breath, try to remember to think about how it must be to need so much attention and go back in one more time.

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Sometimes I Get Jealous

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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 who is totally 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 have had that same emotion.

Let me be absolutely clear before I go any further….I do not envy him. I do not think he has the good life and 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 still needing to do for him.  I know he had 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; it’s about my own 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, when I became a full time caregiver, I committed to that role totally.  I ALWAYS put Lynn’s needs ahead of mine except when to do 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 really needy one day because he is feeling pretty rotten or achy, chances are I’ll put off eating, going to the bathroom, or completing home/work chores until I can get him at least half-way comfortable.  I sympathize with his inability to comfort himself and I show that concern and acknowledge that need by tending to him first.  He in turn tries not to ask for anything he absolutely 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 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 any more 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 yet I still need to pull of his clothes, give him a shower, 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 remind 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 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 go away, I would be home and he would need my help so that’s not much of a realistic option.
To finish reading this post, click here: http://multiplesclerosis.net/living-with-ms/sometimes-get-jealous/

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