“Sweetie, Come Here.”
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, 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.
Interruptions
How many times a day does your MS patient call you for help? If I had slept the night before, I would tolerate it well. If I haven’t, I do a lot of mumbling when I get the “call.” I admit I get frustrated a lot. I must 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 must work to eat, but it’s hard to manage it all.
Cost of Home Care
How do you afford it? You must work, but to do so you must 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 must turn it off and say a prayer of thanksgiving that I’m still working from home.
Come Back
Being here, though, is both a blessing and a curse. Sometimes I think if I hear, “Hey, Sweetie,” one more time, I 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….
Hang in There
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 how it must be to need so much attention, and go back one more time.
Posted on July 26, 2011 by mscaregiverdonna
