Hey Sweetie! Can you come here a second?

I yell back, “Just a minute.  Let me finish this sentence.”  Then I try to re-collect 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 go 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 often 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 not 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 into 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 day care) or having someone unknown come here to stay. I find myself thinking about that at times and just 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.  Actually, 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.