Do you ever get a day (or even a few hours) where you are not "on"?

[Ottakee]

It seems like I always have responsibilities for others even when it is my "down" time. I am sure it is a season of life but I would love even a few hours where I did not have to carry my phone, handle things for others, be responsible for other people, etc.

 

I have 3 special needs young adult kids that need quite a bit of help as well as managing their meds, finances, doctors, and transportation. My MIL is on hospice so that is several appointments a week plus helping her plus running her errands, paying bills, handling paperwork, etc. I am also payee for my disabled brother so on call there as well as handling finances.

 

Today I had my "grandson" (my adopted son's bio brother's 3 year old) for 4 hours. He is a great little boy but needed a lot of eyes on watching just like any little one.

 

I do try to get out for 1/2 hour of exercise a day...walk, ski, etc but even then I need my phone on me in case my MIL has a health crisis as I am point person.

 

I dream of a cruise or a beach get away where I would only be responsible for myself. A friend could come if they were self sufficient :-).

 

We have done 2 trips to Clearwater/St Petersburg but both times I had my 2 girls to take care of plus their bio siblings (3 of the 4 have special needs too) so I got very brief moments of down time on the beach but still had responsibility for them.

 

Again, this is just a season (a long one though).

[LucyStoner]

Not often. But a bit.

 

My fantastic friends just let me know they are sending my husband and I away for a weekend very soon while they take over as zookeepers. I really couldn't be more touched and I am looking forwards to it immensely.

[Rachel]

This past year I went backpacking one weekend a month with a group. There was no cell signal. It was nice being completely off duty, no texts asking where xyz was, everyone had to figure things out of their own. I had no idea how much I craved that time until I had it, it was nice.

 

((((Hugs))))

[maize]

Not much.

 

My husband will sometimes take the kids so I can clean house uninterrupted, that's about as close as it gets.

[Elizabeth86]

Not really. I don't have the need to be off for any length of time. 20 minutes throughout day to play on my phone or whatever just to relax. More than that right now because I'm pregnant and quite honestly very lazy right now. I am hoping for that burst of energy soon. More than anything I crave alone time with each of my kids. I'm terrible at shifting my attention from kid to kid and I'm so relaxed and happy when I can have one on one time with them.

[JustEm]

Yes, I get it every morning. Dh gets up, takes all the kids downstairs, and makes breakfast/hangs out with them. I can keep sleeping or do whatever I want in my room. If I leave the room the kids know I'm awake and will come rushing to see me. Lately, I've been making it a point to wake up with dh so I don't waste my free time sleeping. When breakfast is done one kids will come tell me and I get to choose if I want it delivered or if I want to eat with everyone. I usually eat with everyone but sometimes I choose to eat in my room and don't come out until I'm done my coffee. Other than that, dh and I try to carve out downtime for each other and time together regularly enough so our needs are met. There are of course time where this routine is impossible but we try to always get back to it when those chaotic seasons have passed.

 

I'm sorry you are struggling. I hope the chaos settles enough for you to find some amount of real free time

[Zinnia]

Not enough. I get spurts here and there, but not enough.

 

My sister in law visited in December. She is 18 years older than me, a unique blend of a SIL and MIL. We are going up to see her in July (she lives far away from us). She is going to keep our kids overnight for the 2 of us to escape. She encouraged dh to let me have a night alone in a hotel soon. Dh travels, so we have hotel points. It's not something that I was craving, but the idea is a good one, and I am looking forward to it next month.

[PeterPan]

The hospice stage is hard, sigh. You can also just call and talk with them. 

 

Are your kids on medicaid waivers and can the funding be used for respite care? I agree, I've tried doing trips with my ds and I'm ON, no matter what. Unless I have someone to watch him safely so I get a little time to myself, I'm ON. And if that person can't handle him, I come back to worse. :(

 

You might try working on getting more than 30 minutes a day to yourself. It sounds like you need more. I started going to the Y, even though my ds has backed off on classes, and it's *me* time. I just walk out of the house and talk with adults and stay gone a while. And I come back refreshed and perky. And if I'm really angry about something, lifting weights makes it a lot better. You forget all that for a while...

 

If you can't get respite care like that and up your personal time daily, then maybe try 10 minutes of positive mindfulness in the morning? It's really good for your brain. We do it with my ds to stop negative perseverations, but it's a stress reduction strategy too. You basically just stop, close your eyes (or not) and go back to your happy place. With him, I do it guided, so we talk about some aspect of his happy place, like what were your favorite things to eat there, if you could do any three rides there with no wait what would they be, etc.

 

If your stress is exceptionally high, there are some other stress relieving techniques like TRE. But just in general, some mindfulness might be a quickie break for you that you could squeeze in.

[Wheres Toto]

I get a completely free weekend about once a month.  Dh takes the kids and goes to visit his parents.  Sometimes I'll take in a movie and dinner with my oldest on those weekends, but often I just stay home watch tv, read, and clean.

 

The kids also do TKD three times a week for an hour and I'll go and sit at Panera and read.  I sit in my car or at a park when it's not freezing.

 

My kids are also old enough to make their own lunch so I'm not as on-call as I used to be.  Right now it's 9:30 and they are still asleep so I've had an hour of quiet already.   

[J-rap]

Wow, you are one busy woman caring for a lot of people.  I would think the only way you're going to make that happen (as in a couple days off somewhere) is to plan it advance, and then don't let anything get scheduled during that time, and learn to say NO sometimes: to the extra siblings, to the extra commitments, etc.  Can you find someone else to watch your children for a couple days?

[amo_mea_filiis.]

Nope.

 

I have my 2 (dd is currently having an upper endoscopy). I’m mostly responsible for the medical maintenance of my 5 extra kids, as well as watching them often. Then I watch my 6th extra kiddo, which is often with winter weather and school delays/closings.

 

At the gym my phone is on do not disturb, but I glance when I break for water. Same at PT. Same at night.

 

Mine are 16 and 13 and I long for another cruise. The first cruise we went on many years ago the kids were mostly independent, and I’d imagine now would be even nicer. My dd’s anxiety may prevent her from coming on another cruise though, and not having her with us would decrease my ability to fully relax.

[Ottakee]

I do some some down time each day but not where I am totally off duty.  I might be down....but "on call".  Disabled mother (power wheelchair full time) and mother in law (kidney transplant on on hospice for pancreatic cancer) along with a disabled brother and 3 cognitively impaired young adult kids combined with a very small immediate family makes for not a lot of help.

 

I do try to ski 30 minutes a day several days a week.
 

I am working on getting away for 2-3 days when 2 of my kids are at Special Olympics state games and my friend will be watching other dd and all of the critters.  I might stay with a friend one night and then a hotel 1-2 nights.  I will still be going to watch my 2 compete, watching their fun broom ball tournament, and still being on call by phone for everyone but I will not have to cook or clean for anyone for 2 days :-)
 

I am working on downsizing my life and responsibilities but right now, this is just a season of great need.  I honestly love helping people.  I might just have to work on trying to figure out a "duty free" day once in a while.

 

Last time I drove up to visit a good friend about 2 hours away we took a 2 hour walk and I left my phone in the car since she had hers (and any huge emergency knew to call her) and I came back to 6 missed calls and several voice mails and texts to deal with............but we did get a wonderful 6 mile walk in.

[wintermom]

 

I am working on downsizing my life and responsibilities but right now, this is just a season of great need.  I honestly love helping people.  I might just have to work on trying to figure out a "duty free" day once in a while.

 

 

Sounds like you have created or fell into a life where you are a full-time nurse. Also sounds like you are reaching burn-out stage.  My mom was a nurse, and visiting her retired nursing friends is scaring her because they are all in very poor physical condition. She's had multiple hip and knee replacements herself. A life of full-time nursing is very hard on the body.  Take good care of yourself.  :grouphug:

Edited January 5, 2018 by wintermom

[scholastica]

Every once in a while I get whole or most of a day. It is wonderful. My dh will sometimes take the kids out on a Sunday afternoon without me. Also, every once so often my dh will give me a teacher workday. He takes a day off, takes the kids on a field trip and I get caught up on any grading and planning. The house doesn't get wrecked while I am focused on the school stuff because they are all gone. Years ago I read a book, A Mother's Rule of Life, and in it she described how she and her family carved out a Mother's Sabbath. She would leave on a Saturday and be gone as long as she needed. I really can't remember if it was every Saturday or once a month. Time away is one of those things that really requires the assistance of a spouse or another mom to pull off. It's especially difficult with SN kids who are used to you and how you do things. I hope you can work something out.

[Julie Smith]

I admit I’m lucky. I remember feeling that way when the kids were younger. But my boys are older now, and for the most part I rarely feel, “on†outside of just getting my various stuff done. In addition to my kids growing up, my Dh is very much better dealing with stuff.

 

Mind you this morning I had to get up and help him find something he had found yesterday. he had misplaced it again. But for the most part those times are limited enough that it’s good to feel useful.

[sassenach]

I have found that just 24 hours away can be magical. Hotel, eating out, sleeping in... that can get me through a long stretch. It’s great if dh can come, but that takes more work coordinating care for my ds. What’s easier is a night away with the girls. Dh takes on my duties.

 

I have 2 girlfriends that I try to do this 1-2 times a year with. We’ve had a hard time coordinating dates this year (18 kids between us, it gets tricky!).

[Garga]

The administrative assistant at my moderately large church cannot leave her work home. If someone emails the church after hours, she’ll be up answering their emails, even very late at night.

 

So her husband, who is the groundskeeper at the church, takes her on a cruise once or twice a year. No cell reception! No wifi! She can’t take her work with her.

 

For me, I can’t afford cruises, plus I don’t have the burdens that you (OP) have. But I go every week to the $5 Tuesday movie in my local theater and see whatever is playing, even if I’m not too interested in what’s playing. For two glorious hours, I am unreachable. I am uninterrupted.

Edited January 5, 2018 by Garga

[fraidycat]

Yes, I am extremely lucky. I get plenty of “off†time.

[Jean in Newcastle]

I get more now that my kids are older.  But technology (esp. cell phones) means that I'm never completely away from one of my kids or my dh from being able to reach me with a problem to solve or a request to do something.  But I can tell them no if I need to.  (I don't often tell them no but if I were truly in a position where I couldn't help out, it wouldn't be the end of the world for them.)  I feel the "free-est" when I'm all alone in the house.  Even if I'm still doing house chores. 

[lewber]

I am very lucky to get lots of it and I would be a very mean and nasty person if I didn't. I don't know how you do it. I hope you can find a break soon. So many are lucky to have you in their corner! 

[rutamattatt]

We also have a special needs child and even when I am "off" I am on helping to manage expectations, emotions, being ready for anything.  DH is a great, hands on dad, but does not deal with all of the emotional management that has to happen all day long.  It has gotten slightly easier overall as our other two children have gotten older, but it really is unrelenting.  From the moment child gets up to moment child goes to bed, and then even after that dealing with/talking through daily "fires" that need put out.  It isnt bad, just unrelenting.  

 

I totally burned out a few years ago.  Totally.  There was zero down time if I was here.  DH realized this, and insisted I started taking weekends away.  We can only manage it a few times a year, but it is the ONLY way I am ever really, truly off.  I go see musicals with a friend who totaly gets my life.  We see shows, nap, read books, eat.  I do whatever I want whenever I want, and it is about the only thing that helps me catch my breath and dive back in.  It is difficult to make it happen, I often come home to an emotional poopstorm, but it is what I need so we all just deal.

 

I hope you can get respite care to get some time to be "off".  You deserve it...you NEED it.  

[Ottakee]

We also have a special needs child and even when I am "off" I am on helping to manage expectations, emotions, being ready for anything.  It isnt bad, just unrelenting.  

 

 

I hope you can get respite care to get some time to be "off".  You deserve it...you NEED it.  

I think this is it.  It isn't that any of it is bad per say and my kids truly are awesome and do a lot better than people with their disabilities might be expected to do, but it is just unrelenting.

 

It is call the insurance company because one child was dropped (seems to happen to at least one kid every Jan), manage back accounts for 3 people, call hospice social worker, run errands for MIL, help dd figure out how much is on her debit card and how to order her meal at Wendy's, call health insurance company for MIL to find out plan benefits, etc.   Really, none of this is hard, difficult, or particularly taxing.  It is just that it is a much of the day, almost every day thing.

 

next week is calling the tribe about tribal hospice benefits, possibly looking at care places for the future, driving MIL to a funeral, etc.....and that is just Monday.

 

My kids do qualify for respite but it can be hard to find someone trustworthy to watch them (and someone or same person for all of the critters) as you can't just use a 20 year old college girl for a 30 year old young man.

 

Really though, I don't have it that bad.  I do try to put myself to bed and take 1/2 hour to read each night as well.........until someone needs something.

[Hannah]

Is there any way of carving out time for yourself daily that the family knows is your 'off' time?  Say after dinner till breakfast if that could work.   They need to keep their request for 'mommy's office hours'.  It may take some getting used to and couching to 'write it down and I'll read it in the morning' (assuming they can write).  Would your dh be wiling to divert requests until morning?

 

Its stressful waiting for and not knowing when the next call or request is going to come.