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Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,681
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Making time for yourself is a big deal for a CALS, between the difficulty in arranging it to the guilt you feel! I want to tell you CALS, it is SO important! Now, I have not done it as much as I should, but I do go out with friends at least once a month, and I just got back from a 4 day trip ALONE.

Here is how I figured it out--

First, I looked at my options. I was invited to an out of state wedding and started planning about 4 months before hand. I will say, I did not say one word to my husband. It would make him nervous and he would try to talk me out of it. First, I started thinking about who would help me. the last time I left town, I called my sister in law and asked her to come down to FL to help me. (she lives out west). It is not easy to ask people to help, but many are waiting and ready and don't know how to help you. so many see your exhaustion but don't really know what you need. I have 3 teens living at home, so I talked to each of them (most responsible first) and asked if they would be willing to really completely take care of him while I was gone. They agreed. I do have a caretaker who comes everyday for 4 hours so that was helpful too. I started planning what each person would be responsible for and talking to them about what I expected of them. Luckily, my kids have observed all I do so it was easy to explain. when my sister in law came last year, she had no idea what to expect, but was willing to try. (she was the one who insisted that I hire part-time help after 3 days doing what I do!).

My local ALSA has a respite grant which helped alot, and if you don't have care now, they can help you find someone while you get away. Hospice also has a respite program.

About a month before the trip, I casually mentioned it to my husband, and gave him detailed list of who would be doing what and how he would not be un cared for. I continued to talk about it casually over the next month, how nice it would be for him, to have a different routine and get a break from me!

the week before I left, I physically practiced with each teen what they would be doing--from transfers to bathroom issues (the hardest for anyone!) to feeding etc. when my sister in law flew in, I spent two days with her as well, before I left. I knew that if there was an emergency, I could get home quickly, and I knew this was very important to me , and I knew that my husband would have good care even if it was not me.

I was very nervous but I moved forward and did not cancel my trip even though I thought about it a lot. I am so glad--I was able to recharge and rest and feel like a normal person. the best thing was the sleep! :p

I hope if you are feeling overwhelmed and exhausted, you will consider respite. It seems like planning is too much to do, but the reward is great. Don't be afraid to ask people to help you--the worst they can say is no. and really, if they are not prepared to help, you don't want them anyway. Your help may come from a surprising person as well. Even if you PALS puts up a fuss, you must do it for yourself. Originally, I started by going out to dinner once a week with a friend. My husband hated it, in fact he would text me very nasty messages while I was gone and then tell me how mistreated he was when I got back. but the more I did it, the easier it got for both of us and he stopped fussing and began enjoying it.

Think about it, no one should do such a physically, emotionally, and mentally demanding job 24/7/365. We all know that--you must care for yourself if you want to give the best care to the ones you love. your PALS deserves the best...
 
Great post Barbie! You're absolutely right! You can't be as good to your PALS as they need you to be, if you are not also good to yourself.
 
Great post Barbie!
 
Barbie, you are the best. You give the best advice, the best ideas and the best love and friendship. I think your avatar should be wonder woman. I am so glad you got a break.
 
thanks for that great post Barbie!

I'm not there yet, early days and only minimal care that I need to give, but already it is easy to lose the ability to do stuff for myself and take breaks.

I tend to feel guilty a bit though - my PALS can't take a break from any of it.

But I know really, that if I don't take breaks and wear down then I'm no good to anyone...
 
Glad you got away and recharged and didn't talk yourself out of it. You have to take care of yourself, too.
 
As a PALS, I hope my family members read your post, and I encourage my daughter to get out and take breaks, even at this early stage. Plus, I enjoy being alone, while I still can! Thanks for the details about how you worked it out. Blessings!
 
So so so thankful for you and your post and for this forum! Great post! Whew....must make a date with myself to get out of the house and give my PALS and me a little break. Hope you can have a little respite again soon---yea sleep!
 
Really happy to read this! I'm planning a 3 day trip out of state, and of course, I've got all the worries that go with it. I feel like I have all my ducks in a row, but still...
Glad to see you were able to make it work. fingers crossed.
 
Barbie thanks so much for paving the way for those of us coming up behind you. Your advice is so appreciated.
 
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