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!
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...
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!
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...