I am holding this thought—Hire in-home sitters via an agency—as the next step I will take when A) I start class in the Fall (if it doesn't feel ok to leave Jeff alone for 1.5 hours),or B) I am going crazy having to walk so slowly and need to be on my own for a little longer some days.
This almost makes me wish there were something I HAD to do in order to make taking this step absolutely necessary. But there's not (at least not often,) except in that getting away without Jeff MIGHT be something I HAVE to do.
This is why I sort of wish Jeff were more amenable to daycare. Because then I could drop him off, and it wouldn't matter whether my activity for the day were at home or away from home. I would still be relieved of care duties for a short time.
But to have the helper at home, I almost feel like I have to leave the house, otherwise it will seem like—Why in the heck do I need someone there anyway? Unless I'm coming and going, or something.
Does this seem familiar to anyone? That you sort of have to think up an outside activity for yourself so that you get time alone? Most of the work I do is computer-based and easily done from home, but I'd rather do errands and grocery shopping alone sometimes. I also have various writing projects that want my attention, and it is possible that I will feel less stifled if I take my computer elsewhere and work on them.
In the beginning I also thought I'd have to leave the house when an aide came to make it "worth it". But I learned that isn't true--I can stay here and go upstairs to our home office and work, or go shut the door, lie in bed and watch TV, read, go on my laptop, talk on the phone--doesn't matter. The important thing is, I AM OFF THE CLOCK! Most of the time I actually do leave the house because although Steve is able to come along to run errands, for example, it's much easier to get things done without him. But I do try to set aside one morning a week to stay home when the aide is here and just relax.
I have always looke at having our in-home help as getting more work done in the time they're here. As the Caregiver my time is best spent doing the things only I can do. I am responsible for seeing that everything gets done, but that doesn't mean I have to do everything myself. It's much like running a business. I do the work I need to, and they do theirs. At the end of the week, showers have been done, calls made, appointments set, grocery lists made and shopped. Floors are clean, as are dishes, the kitchen and bathroom. DH has had an outing without me.
If I have a Dr. appt or take my 4 hours respite, separate helper time is arranged. becAUSE dh CANNOT BE LEFT ALONE.
Our time is too valuable to be spent on jobs anyone can do. Wearing ourselves out on them reduces our ability to be clear and sharp when we need to be in advoczating for our LOs.
Yes, I see what you mean Carosi. As Jeff's needs become greater I imagine I will fit into that category. At present, since he can more or less feed himself (I give him the food, of course,) take himself to the bathroom, and not get into any real trouble, I do have adequate time to get odds and ends done. But I also think that my limited "to do" list comes from several years of gearing my life toward primarily babysitting someone without tasks and goals of his own. So, apart from writing projects, I've lost any sense of what I could or should be doing.
Emily, Don't feel guilty about just going out and taking a walk alone, or window shopping or, what I often do, sit in the car with the windows and down and read a book. You can go to a restaurant with your laptop and write or read. Just find a quiet corner. I also take the time to meet with friends for lunch. It is just the time away. I stayed home one time to paint but DH would not leave me alone. He constantly has to know where I am so that doesn't work for me. Don't think of it as a selfish time away but as a recharge so you can take better care of you spouse.
I have an in-house aide come on M, W, and F before I take my wife to day care. The aide brings the paper in, helps get my wife dressed (if I haven't finished yet), makes the bed, does the laundry, gets our breakfast, and washes the dishes. This gives me time to relax over my coffee and read the paper. After about an hour the aide and I take my wife down to the car, and I then drive her to day care. It's really a help to have someone else do those chores.
I may just experiment with Tuesday/Thursday, starting in the Fall, when my class meets (9:30-11:00,) then just extend my day out by a bit. Could be the thing for now.
emily--the agency I use requires a 4 hour/day, 20 hr/week minimum. Don't know if that's the industry standard or not, but I was told it is considered a short shift and the really good aides want longer shifts. So far, I have had pretty good luck. I agree with Carosi and her posts on this subject helped me when I first brought aides in. I was unsure about how much to ask them to do, her encouragement helped me get it--they should do whatever helps us out and takes the load off us.
I have in-home care through an agency - and I work full time, so they are at my house 7:30 a.m.until 5:00 p.m. Monday through Friday. They dust, vacuum, mop the kitchen and bathrom floors, wash his bedding and clothes. I buy Marie Callendar's meals for them to prepare for his lunch, along with at least two fruit breaks each day. This makes my life much easier.
It costs a lot of money, I'll admit...but I know he's content at home, and it cost me less than a nursing home.
I never had them there while I stayed home...The others have learned to relax in another part of the house, or go out for short periods...
We need time to ourselves, however we choose to spend it....go for it, Emily!
emily, I had no choice - if I wanted DH to be at home I needed a 24/7 aide. When DH came home from the hospital, I cooked meals, supervised ADLS, showering etc. I felt that was my job as a caregiver. Then I started wondering why I was paying an aide 24/7 if I was doing all those chores. The geriatric care manager I had hired to convince the drs to allow him to come home said to me "Why are you doing all that? That's what the aide is for, so start letting go." It took me a while, but now I stay upstairs 2-3 hours each am to take care of the things only I can do ...pay bills, check email and other correspondence, read this website and sometimes just daydream or watch guilty pleasures on TV. while in the house, I'm never truly "off duty" because I hear all that is happening downstairs but it does give me a break and some sort of "respite". Unfortunately I can no longer work due to my chronic illness, but I would much prefer that for the intellectual and social stimulation. It takes time to figure out what works for you, but please find so "me" time each without feeling guilty. Our situation is expensive but I haven't found a workable alternative; so I guess I'll die poor. DH is 61 and I am 60. This is not the retirement we planned.