Have you ever stopped to think about how many choices you make in a day? Mine start before I open my eyes
- Wonder if Lynn will know I’m awake if I pretend to still be asleep?
- What time do I really have to get up to be ready by xxx?
- Do I want to get up now or just lie here?
Those are simple choices without much consequence. Then as the day wears on, more difficult choices have to be made
- Do I take this call that’s probably from work or just let it ring while I put Lynn in the bed?
- I’m hungry but if I heat my food up now, he’s probably going to need to be cathed soon so it will get cold?
- I really need to go to the grocery store but he’s so tired and feels so bad can I make it another day without xxx?
- Do I agree to come in for the meeting or try to arrange it by conference call?
Those type of choices take more thought and calculation so the difficulty level is slightly more, but what I’ve encountered this week in talking with others who are caregivers is that often the choices are much more difficult and have the potential to deeply affect many.
One person I spoke to was trying to decide whether to limit the number of hours they worked in the office by going home at a certain time each day and hopefully finishing up from home. While that sounds like a simple decision to make, if you’re a manager in an office and a crisis occurs, you have a responsibility to see that it gets addressed. If you say, “I have to go home to feed my xxx,” then you risk being viewed as being unreliable or not caring about your job.
Those who are not caregivers don’t realize the internal turmoil that we caregivers often go through each day. Each decision we make impacts not only ourselves but the one we are looking after and sometimes others as well. For example, in my job, I offer guidance to managers on issues often related to conflict or safety. I often have to choose when to make a call or check for messages as opposed to answering a “call” from “down the hall” related to a comfort need. While I often try to do both at the same time, there are times that I need to concentrate solely on one or the other. In those situations, someone has to wait so I have to determine whose need is greater at any given moment and who might be at greater risk of harm if I don’t choose them? Making that decision often produces tension and anxiety in my day. But even when the decisions are not as potentially risky, every time I have to make a decision, it seems something has to be postponed or denied while something else is addressed.
Do you ever get tired of making all the decisions? I do.
On the other hand, making the decisions gives the decision-maker power. Poor Lynn is totally at my mercy to make decisions in his best interest. Our relationship has to be solid so that he can completely trust that I will consider what he wants and do what is best for him, if possible, or as long as no one else is hurt. I guess that’s one reason why when I make a decision that does not put him first, I have a twinge of guilt. He doesn’t get to have the choice; I do.
There are times though that the one being cared for forgets to have the final say. I think about someone I know whose husband had to have his larynx (voice box) removed, shortly after suffering a stroke that paralyzed his writing hand, and affected his eyesight. He had virtually no way to communicate his wishes. He made the decision to die. He stopped all medical treatment. He was of sound mind. Faced with a lifetime of not being able to communicate, read or write, he just decided he had had enough and was ready to go home to heaven. His decision…not hers and she had to honor it–that’s tough.
As much as we might get tired of making decisions, it’s one of our most important functions as a caregiver. We need to know what the person we are caring for values in life; what their personal preferences and choices would be in most situations. Then we need to respect that choice even if it’s not what we personally would want. This is especially difficult when you don’t agree with the decision or the decision adversely affects you in some way. I’m thinking now about a conversation Lynn and I had today. He’s still feeling lousy from starting Rebif. I told him I thought that if he wasn’t feeling better by the end of summer, he needed to come off it. He said he planned to give it a full six months which would be closer to the end of October. I realize he needs to make that decision even though I, too, have consequences from his taking the medication (he feels worse so he needs more help, he’s depressed and angry at times, and I just hate to see him feel bad every day all day). So sometimes not making the decision can be just as hard as making it.
One other decision, I recommend you make. If you haven’t already, ask the one you are caring for to make you his/her medical decision-maker in the event he/she can’t make their own decisions. If you’re the legal next of kin maybe it’s not as important, but I’ve found that even now while Lynn’s perfectly able to make decisions on his own, that document gives me credibility when I’m talking to his medical team about options or trying to obtain information. I highly recommend you get that signed in advance and give the medical team a copy. It also wouldn’t hurt to go ahead and designate someone on your behalf as well. That would be one less decision that has to be made later on…