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As many on this forum know, I'm 39 and MUST work two jobs to barely get by for myself and take up the slack for Daddy's care. It's TOUGH. My days are filled with fear about Dad's health, resentment from being the only of his many kids who gives a rat's butt, and guilt for the anger and resentment. I've started to notice a distinct pattern lately. Whenever the ALF or Adult Day Center call with an "update" I freak out. Usually, I keep my cell phone on silent (for peace of mind), and to see a missed call from either place and not being able to reach anyone when I return the call literally STOPS. MY. DAY. I work in a job that requires lots of focus and creative energy. Needless to say, this emotional roller coaster KILLS MY CREATIVITY and I am finding that my productivity at work is massively suffering. So... though I appreciate the updates, I'm wondering if I can cut back on the calls--especially the "Daddy can't poop and is agitated" or "Dad had another panic attack" or "Dad won't turn on his A/C which is causing him to overheat, which is affecting his breathing, which is causing his panic attack..." type of calls. I work 45 minutes away and can't do anything from my desk but worry and not work. I just got one of those missed calls and wasted 20 minutes of trying to reach someone only to hear that "Dad's OK." My hands are literally shaking. So, is it wrong for me to feel relief when I'm at work and away from it all? Would it make me look like an insensitive, selfish you-know-what to ask both places to only contact me in the event of a REAL emergency? I just want balance. Off to the ladies room to boo-hoo and wash my face before the staff meeting that I won't be prepared for.

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My mother went from "assisted living" level of care in my sister's home, to needing a nursing home. I agree, Tinyblu, that seems like a dismal reality. And it is end-of-the-line. So it is sad, but it is nothing to feel guilty about. If your loved one needs that level of care, it is Not Your Fault.

And what seemed kind of dismal when Mother first moved in seemed different as we got to know the staff and what went on there. There was a morning activity and at least one afternoon activity every day. No one had to attend but it was available. My mother liked bingo and spa day and making bead necklaces and watching the rubber ducky races in the little stream in front of the building. She liked the live entertainment -- especially the accordion player.

When it is time for a higher level of care, don't despair. You are not "putting Dad away." You are meeting his needs and giving him an opportunity to enjoy new activities and people.
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Thanks everyone. I am definitely going to define the parameters of when calling is appropriate and ask for text or email updates on everything else. I visit Dad at least three times a week anyway. That should more than suffice for a poop/panic report.

...and I must face the reality that Dad may need a higher level of care. It's interesting... when I look at the people in the nursing home, Dad doesn't seem to be that "far gone".

It's probably more me not wanting to face another bout of guilt about putting Dad "away". I went through it when I put him in Independent Living, then again when we had to put him in Assisted Living... the nursing home just seems so dismal -- truly the end.

I'd always thought most elderly just sleep away peacefully. Watching the slow decline is depressing...
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Tiny, I'm someone who takes half an hour to pick up a train of thought once it's been interrupted, so I really feel for the impact this has on you at work.

Grr. It must make you a bit paranoid that the staff at both places are being intentionally thick. They're not, of course, but it's impossible not to wonder sometimes.

You might hesitate to explain to them (again, no doubt) that your cellphone is for emergency contact *only* during working hours, for fear they might somehow take it into their heads that they mustn't contact you at all, ever. But you'll have to have faith.

Jeanne's outline of
[phone number] in case of emergency - 911 calls, treatment decisions; [email address] for everything else

is something you could print out, laminate and pin to the back of your father's door or some other prominent place, maybe? - with a copy, too, for the nurses' station or admin. office.

Another idea that might help if they're up to it is giving them a text format to follow. E.g. they should state

nature of incident - (not eating lunch/lost sock/fighting/open fracture)
name of person sending the message
action requested - (none required/please call [tel. no.]/meet at ER)

But in the end you just have to persevere. Lots of people are gifted with common sense. Sadly, many are not so much...
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Tinyblu, I know those calls. You look at the caller ID and go into sheer panic, heart feels like it is going to burst, your hands sweat, and you can't think straight.

Whew, I started to panic 7 years ago when my Mom would call me from her home to say Dad had fallen... Dad's falls were minor tumbles as Dad had gotten so much shorter as he aged, so he was closer to the ground. But still I was in panic mode. There were a couple of 911 calls for the falls... oops. And part of that panic was why didn't my folks understand what this was doing to me.... please please please move to independent living or hire caregivers !! Nope, nada, never.

Once my parents moved into long-term-care, and one into Assisted Living, the facilities would only call me to notify me if my Mom or my Dad had fallen... apparently its a State law here. There were times I wish I didn't need to get those calls unless 911 was involved, then that would have been different.

My work was my "vacation" away from all of that. Got my mind to deal with other things not caregiving related :) But when those phone calls came in while at work, my mind would go blank for awhile. Any why call me at 4 a.m. with a "fall report" where no one was injured, it could have waited, try going back to sleep after that :P
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Tinyblu- I hate to say it, but the same thought enters my head when I read this and your other more recent posts - maybe it really is time to consider a higher level of care. I know it's a tough step to take and the temptation to just leave well enough alone is strong. I had plenty of times when I thought "please - just a couple of months without something happening!" But often times it seem that - that way of thinking just lead to things getting more difficult. Have you considered any nursing homes in the area? I know you're very busy with your jobs and your dad - almost a third job, huh? But just maybe if you looked around - in your spare time (haha) and had a place in mind, it might actual give you a little peace - knowing a backup plan is in place. Keep in mind that there are often waiting list to contend with and if it applies- a facility that takes Medicaid.

Beyond my first suggestion - yes, ask the AL staff to only call you in emergencies- and you might have to define for them what you consider an emergency- and perhaps set a specific time for you to call them for necessary, but nonemergency updates.
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I was thinking exactly the same as youngestdaughter. Why would they involve you in the day-to-day things and disrupt your work? What do they think you will do that they can't do? I would let them know not to call unless it is critical, e.g. going to hospital.
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Tell both places to call you if there is an emergency or if they need your permission to proceed with a treatment. All other status calls can be put in an email that you will read after work.

In a medical emergency they should call 911 first and then call you to tell you where to meet the ambulance.

If this is not suitable for them, then perhaps Dad needs a higher level of care. He needs to be somewhere they will help a resident who is constipated without seeking family input. They need to be able to handle a panic attack. They may also want to discuss putting Dad on a new drug but that is seldom an emergency and could go into an email, or an after-your-work-hours call.

What does this ALF do for residents who have no family to call?

Make it clear that you care about your father's well-being and you want to be kept up-to-date on his status. But you can only take emergency calls during work hours. Non-emergency status reports should be by email, so you can read them when it is convenient for you. If they require response, you will provide it the same day.

Some families want to retain a large measure of control, and expect to be informed of each detail. "What?! You gave him an enema without calling me!" It is OK, and not rude or insensitive to inform the facilities that you wish to leave his day-to-day care in their hands.
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Your father is left in the care of professionals. They should KNOW how to deal with things like constipation, agitation, etc. There is absolutely no reason for them to call you unless it IS a real emergency. I think it is fine for you to advise them of that, then you can call and check in on him if/when you feel like you need other updates, if there are special circumstances like him being acutely ill, etc. If they are just trying to keep you in the loop, tell them to write it down or put it in his chart and you can review it at the end of the day or every few days.
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