Moment by Moment
I was reading a blog about advice caregivers give to other caregivers and as I read through the suggestions (all of which rang true,) one connected with me more than all the others—“live in the moment.”
“Live in the moment,” is a phase I’ve heard much of my life in the context of learning to appreciate life. The comment parallels the phases, “stop and smell the roses,” and “this, too, shall pass.” While I rarely “stop to smell the roses” (all the flowers in my yard are artificial, even the roses), I do try my best to “live in the moment” and keep in mind that “this, too, shall pass” but from my perspective, they take on a little different meaning.
When I’m asked what advice I would give to someone who suddenly is thrust into the role of caregiver, I always say, “Take life moment by moment and try not to have, too, many expectations.” I guess that sounds pessimistic to some but I see it as being realistic.
I’ve find that when I plan my day, I still tend to plan it as if I can actually control what happens. For example, today is Saturday. It is the one day I get to actually get a full night’s sleep provided we don’t have anyone coming to the house to help us out. Today, I had no visitors coming so I got seven hours of sleep!!!! I feel wonderful; full of energy. I planned that after I finished our morning routine, I could write my blog, do some flower arrangements for the porch and get some work done for my paying job. Wrong….
I started to write this blog at 12:00 p.m. It is now 2:30 p.m. and when I got interrupted, I had written two paragraphs. Lynn has an unexpected trip back to the bathroom. That’s a big deal when someone is fully dependent on someone else. It takes time to get them undressed again, assist them with contracting their abdominal muscles by pushing on their stomach for them, doing the necessary clean up, back to bed, redress, then back up again and settled in for their next task. That additional 1 ½ hours of unexpected activity will mean either not doing something for my job or not doing the flower arrangements. Things change, moment by moment and usually it’s not something that can be foreseen; however, it’s something that must be handled because it’s necessary and “you” have to do it.
I don’t know how many times we have planned to go to church, or the doctor, or to have friends come over and something prevents us from being able to do so. In most cases, plans change due to how bad Lynn is feeling at that time. The greatest challenge in living with MS is that it’s totally unpredictable. Lynn might feel pretty good one minute and the next, literally, the next minute, he feels like he’s been hit by a max truck. This fatigue thing a MS patient has just saps the very life out of them, at times, and as much as he wants to do something or has looked forward to it, he just can’t. I read a blog by an MS patient who said the fatigue was so bad that if she were lying on the coach resting and the house was about to burn down around her, she wasn’t sure if she could get up and make it to the front door. Lynn says that’s an excellent description. He becomes so tired he absolutely cannot lift his finger to push a button because it takes all his energy just to breathe. So living in the moment, we concentrate on conserving his energy. How is that done? I pick up the slack. I push the button, lift the hand, scratch the itch, adjust the clothing, change the channel, hold the water bottle…everything but breathe for him.
It’s very difficult to live in the moment when so often you want so much to be doing something else. It’s difficult to be in the middle of a project and be called away to cath someone while the food on the stove is overcooking. It’s difficult to be working on something that takes a lot of concentration and be called away to fix a meal; feed the person, clean up afterwards, and the get back to the point you were before.
It’s difficult to get to the point of accepting interruptions as the norm and not getting upset because your plans for the day are not going to be achieved. However, it’s even more difficult to focus on “this, too, shall pass.” Usually, when most people use that phrase, it’s a reminder to them that the hardship will pass and life will go back to normal but not so, for those of us who have MS or care for someone 24/7 who has MS. This is a chronic condition that will not go away and will not significantly improve to the point of lost functionality being restored, in most cases. Therefore, this shall NOT pass unless the unthinkable happens. The challenges and joys of caregiving are all timed together. In “that” moment, there may be unexpected difficulties or a heartfelt laugh. In that moment, everything may work out just as you planned and you are able to stick to an agenda or you may get nothing else but that project done today. Living in the moment is just accepting what you get and making the most of it without building up false expectations and learning to just let life be.
I think of what the Apostle Paul once said and I take strength from it, “I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.” (Philippians 4:11-13, New International Version) That’s the truth of my life and how I keep going day by day, in the moment.
How many specialists did you see before finding "The One"?