Tell Us: What's It Like to Live with Uncertainty?


Tell Us: What's It Like to Live with Uncertainty?

river-801762_640During a caregiving experience, you just can't know.

You can't know what today will bring.

You can't predict what will take place tonight.

You can't know when the next crisis will happen.

You can't know what you'll need to know next.

You can't know if you and your caree will have what you need for as long as you need it.

You can't know how long caregiving will last.

You can't know how you'll feel tomorrow or next week or when caregiving ends.

As much as you try, you just can't see through the fog that caregiving brings.

What's it like to live with so much uncertainty?

In our comments section, below, tell us what it's like for you to live with uncertainty.

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What was living with uncertainty like? Hell... with a voice in the recesses of mind trying to reassure myself that we would somehow manage.\n\nIn caring for an elderly mother-in-law with dementia, the main uncertainty was how long would she live. I'd feel guilty thinking about that at times. We had both lost our full time jobs during the time she had her initial stoke. I used to think, we are both smart, hard working and very employable, but then the economy trashed and finding full times jobs at our ages just didn't happen. We were uncertain how long our money would last. Our household was partially supported by her SSI. I wondered how long our health would hold out without health insurance. Buying new glasses was put off until I really couldn't function without new ones, etc. With the constant stress of 24/7 caregiving, problem solving ... identifying possible solutions ... seemed out of reach. Fortunately, I found this site after my MIL died and read Denise's book \"After Caregiving Ends\" ... It really helped me, so, so much.


Living with uncertainty caused by caregiving is unique, particularly because 1) it generally is related to an illness or some negative scenario; 2) it often through Murphy's Law directly conflicts directly with your own life situations, causing difficult instant need for re-organization/prioritization or change; and 3) it can lead to temporary resentment of the caree (i.e. for the imposition). Frequently the uncertainty I experience falls into these categories. For example: I have a major meeting at work, which causes stress if there were no uncertainty caused by caregiving. Then, the day of that meeting, if my caree wakes up sick, requiring same day medical attention or my direct constant help, then the burden of uncertainty is magnified resulting in stress, shuffling and in some scenarios a bit of panic. I think the question you are asking is really - how do we as care givers not only just live with uncertainty yet how do we live with the uncertainty that is often imposed by another person's life. It is hard enough having not only ones own life to manage (which has its own uncertainty) yet to also live with the added stress of another's uncertainty on top of this. As a caregiver, you often feel what I call \"double uncertainty\" - the key to managing it is to have a good support system, always have back up plans if you can, and to be well prepared. For example, I am prepared at work by doing top quality work so that if I need to ask for time off or flexibility, people are more willing to give it because I am viewed as value adding to my team (even if not physically at the office). Also I've asked for a standing request from my job now to work from home for short periods if faced with an unplanned medical emergency. I make this up by staying late and being a strong contributor when I am there. At least now, if I do wake up the morning of a big meeting with a medical issue that was unplanned, I have some flexibility to work partly from home, which enables me to do the work, and attend to the caring, and to manage better the uncertainty. My credibility as a performer lets me \"call in favors\" when the uncertainty of caregiving poses a potential scheduling challenge. Uncertainty is part of life, yet the caregiver has a double dose of it / a magnified sense of uncertainty because they are managing their own life and their caree's. It is part of the caregiver's job, however if you are a caregiver, you need to be strategic and mindful in handling it or it will be yet another stressor to wear you out in the caregiving journey.


I've never liked uncertainty. Since Michael's diagnosis, the uncertainty factor has been ratcheted up exponentially. At first I had an incredibly difficult time with it. I was anxious and fearful about what would come next. But it's just not possible to sustain a heightened sense of fear forever. I can't believe how much of a roll-with-the-punches kind of person I've become. I never thought I'd become the kind of person who could say \"Well, I'm not going to worry about that unless it happens.\" Don't get me wrong, I still worry at times and I still try to exert control by making plans. But on the Worry-Whatever spectrum, I've definitely shifted toward Whatever.


Well, doesn't everyone live with the same uncertainties? You can read each of those as a non-caregiver and be just as uncertain. The issue, as a caregiver, is that you are hyper-focused on the medical issue of another person. It makes you feel helpless and not in control of your own life. If you were not caregiving, you would not be hyper-focused on these issues, you would just move along life as you always have.