communication

Hey Sweetie! Can you Come Here a Second?

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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Asking for Help

Communication is a tricky process. When I make a statement, not only am I projecting what I think I intend to say, but I am also creating in my mind an image of how I think you will receive my message. I tell myself a story about our conversation before we ever have it. That means that by the time the interaction occurs, I already “know” the outcome of the conversation in my gut before I speak the first word. I may be so focused on what I “know” you’re going to do based on the script I’ve written in my mind, that if you deviate from your “lines,” I’m likely to miss what you say in real time.
Continue reading at: https://multiplesclerosis.net/caregiver/asking-help/

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Remember Whose Life You Are Living

As a caregiver, I want to help make my spouse’s life better. I want to help him find answers to his medical questions, assist him in doing the things he cannot do, and help him in whatever way I can. As his MS has progressed over the years, his need for my assistance has expanded to the point that he is now entirely dependent on me for everything.

MS improved our marriage

When we first were married in 1997, Lynn and I had difficulty bonding because we were both very independent. Our marriage struggled because we did not “need” each other.  Having each been married previously, we were capable of managing homes and children without partners; therefore, adding one to the mix required significant adjustment on everyone’s part.
Continue Reading at: https://multiplesclerosis.net/caregiver/choice-control/

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Can You Speak?

I recently needed to use that phrase in a way I had hoped never to have to use it. No, my husband did not need CPR, but he was unresponsive. He had lost consciousness while being moved using a ceiling transport device and slipped out of the harness to fall four feet landing first on his shoulder followed by his head hitting the ground and bouncing up to slam into the door jam on the opposite side.

After hearing the thud and his caregiver’s cry of alarm, I ran to their location to find him unconscious and using a breathing pattern typical of someone who has had a seizure. His eyes were open but unseeing. My attempts to get through to him included shouting, “Can you hear me?” “Can you speak?”

Continue reading at: https://multiplesclerosis.net/caregiver/can-you-speak/

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