Everyone is on Vacation or Getting Away Except Me

Our group has some of the same themes coming up as other groups online- time off. It’s elusive, hard to find, difficult to even conceive of. So, let’s talk about it.

I remember so many moments in my caregiving periods – including now- when I would sit and listen to others making plans to go places. Even out to dinner and dancing- that was off the table for us. You can’t go dancing when you can’t breathe, or you fall, or you can’t understand. You can’t stay out late. You don’t want to cause pain or confusion for your loved one. You don’t want them to be embarrassed if they are unsteady, or refuse to use a wheelchair or walker even though they need one.

Then to think about a vacation! I did take my late wife to Maui with dementia advancing. Some of it was good. Some of it was terrifying. Some of it was painful to witness. I would do it again in that circumstance, but not in many. I’d love to take my mom to Sweden to meet her relatives now that I have the time available. Her dementia will make that impossible now. And the last trip to Las Vegas with my late first wife included 27 oxygen cannisters in the back of our car going over snowy passes at altitudes that we should never have attempted. I was afraid if we slid into an accident we would blow up! (I am a really awful snow and ice driver).

On the caregiver boards on social media this week time off has been the topic of the day. And like so many of you, nobody had anyone to help. Their siblings had time for their own travels, time for their grandkids, time for their kids- but no time to help the caregiver sacrificing so much of themselves. I have met with some of you and heard your decisions to be caregivers- and that you are willing to accept that the rest of the family is either unavailable because of obligations or are not the people you need to add to the situation. That’s a hard acceptance to come to. I admire the resolve and decisions you have made. That’s why I am here as your caregiver supporter.

We did manage to get away for two nights last weekend. It took lining up two more caregivers, instructions, meals, reality awakeners for the family filling in, and then reintegration when we returned. There was some payback for being gone by the ones we left behind in the care of others in the form of some pettiness and grouchiness. That was a small price to pay for two nights with blackout curtains and desert vistas. We still had phones on and were only an hour from home in case of emergency. But we got away for a breather.

What was interesting was the feedback when we got back from the subs. We could see on their faces the relief that we were back. One had all the experiences: a fall, someone stuck in a tub, loose brakes on the walker, stubbornness leading to near falls, trying to come up with foods that tasted good and met all the new dietary rules, pills on time… all of it came up. Suddenly caregiving was not “just sitting around and watching.” The other sub was clearly tired of the same conversations over and over, and wandering much of the night, and laundry being run three times overnight next to the room they were trying to sleep in.

Sometimes it helps a bit to see the way others experience our caregiving roles, isn’t it? (For those who can find even a day away- I know some of you cannot).

But what of those of you who could ask for a night off? These are the typical obstacles:

• Not wanting to ask for help
• Feeling guilty for asking because the substitute has a life of their own to attend to
• Knowing that you will be so worried about proper caregiving in your absence that you know you will not relax even if you do leave.
• Fear of the substitute not knowing who to call for help and what to do in an emergency
• Guilt for even considering taking time off when your loved one can’t get away
• Fear of backlash from your loved one or the extended family for leaving

All of those are valid. Most are manageable or can be handled with a sense of humor and purpose.

1.    Asking for help is not a caregiver strength- that is why you ended up as the caregiver. Asking for help is a necessity to stay healthy

2.    Your identified substitute has other obligations? I am sure they do. All of us do. But the caregiver cannot ever get away from what they are doing. The non-caregiver can reschedule their calendar.

• Can they get some help themselves to come help you? Can they get their stuff handled and create a two or three day break to come relive you?
• If it is finances, remember how we used to take up a collection if someone was in need? Now we have Go Fund Me. WE have all kinds of ways to provide financial support. Put it out there that you need miles donated or finds to get a helper on a plane to come help you.

3.    If you feel like you would be abandoning your loved one without help, create the help. Make that notebook for communication, and with all the names of doctors, helpers, the pharmacy. Put the advanced directives in there. Put the medication schedule on there. That part is totally manageable

4.    Guilt and backlash? Time for boundaries and humor. We know how many caregivers die from stress. Those not willing to help will be in a mess if you get sick or injured. Let them say what they will. Remember Peanuts? The teacher who made that sound when talking? That noise goes into your head when anyone is negative toward you about needing time off.

5.    Your loved one will be angry if you take a moment? Were they a caregiver? Can you appeal to their memory of how hard it was? Can you let their comments slide off your back?

Caregiver- you deserve and have earned a bit of time off. Even asking for friends to volunteer for an hour so you can go get a haircut or a cup of coffee. Every break is a step toward being healthier in a really tough job. So put it out there: “I need two hours next Tuesday to go to the dentist. Who will come at 10am?”

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