Wednesday, January 20, 2010

What is Normal to a Caregiver is Not Normal to Others

To get away, to escape, to have respite, take a vacation, how ever you would define the luxury of getting away, it has a much different definition and result for a caregiver.   I have been able to get away at least once a year since I started caring for mom.  That isn't very much, but it is normal, for me.  I have lived an isolated  life here since caring for mom, getting out sometimes only once a month sometimes not even that.  The norm for me would be at least once every two weeks, that's the norm.  My "radar" is always tuned into what mom is or isn't doing, whether she is sitting in the wheel chair in the front room, or in bed in her room and no matter what time of day or night it is, that is my norm.

Getting away for me, requires massive and involved preparation, which I have talked about in other posts.  The task of it is enough to make me stay here and not go!  But, I manage to leave.  Now you would think I would relax and enjoy wherever I was going, whatever I was doing?  Mmmmm, no.  Because I have been taken out of my norm, my normal environment, my normal eat and sleep schedule.  I have been taken out of that 24/7 on-call, round the clock way of life and put into the norm of someone elses life.  It is not comfortable, it should be, but it's not.  Speaking for myself, I am not comfortable going somewhere else, and I am always anxious to get back to my normal! 

As much as this home has become my prison and caregiving my jailer (getting honest here folks, has to be that way), this is also where I feel secure.  It is difficult to just sit and do nothing somewhere, to not feed someone, change them, listen to them whine and so on. Even though there is desperate need to go away at times and have what others call normal take place for awhile, I can't really relax and enjoy it. I don't know how I will begin again and adapt to what others call normal once mom has left us.

7 comments:

  1. Girl you are living my life. My sister will just drop in and say go somewhere. I say I have to feed mom or it is time to change her or time for her nap. She says go out and eat or to a movie. And I say but I will have to hurry back to get mom up or put her down. My sis can't do these things by herself . She can feed her but getting her up and down breaks her back .. Even with the lift. If I do make myself go I worry that mom is sitting in the chair to long or laying in bed to long. I am like you it is easier to just stay home.

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  2. Ok, I think there is only enough of me to live mine lol. But I get what you mean! I can't count how many times someone has said to us the last 4 years, you two need to come over for dinner, or we are having a picnic...come over, we need to get together, and so on. I say and say and say....we can't go places together unless we hire someone to sit with mom, and that costs money. Or if I go somewhere, my husband has to stay here, and vice versa. We stopped leaving mom alone on Easter of 2006, our time has not been ours since.

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  3. I have only been taking care of my mom since September 2009. I have not taken any time off. My life has pretty much come to a hault. I imagine I will need a vacation. I dont think I can leave mom with anyone.

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  4. You will and do need time away. Try to start finding people you can put together to form a careteam that can take care of your mom. It is important to do this before you REALLY have to get away. I have been able to go away each year because my sons helped with the expenses with the sitters for mom. Each year the sitters increased and so did the expense. The first week of Dec we went to TN for one of my son's wedding, it took 6 people to form a team for mom. Many schedules and instructions, but it had to be done. I have some people to call on if I want or need to get out once a week for a couple hours. It has not been easy to get people to sit, and there have been weeks even a month or more at a time that I didn't get to go anywhere, I don't recomment that...So work on putting your careteam together, or even just a care individual, you need to have respite too.

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  5. I started taking c/o my mother in March 2009. This has been the hardest thing I have ever done. I'm the oldest of three and luckily have one sister who helps me out. We split nights, I have 4, she has 3. Dad has day shift while we are at work. I'm usually the one taking her to the doctor appointments, which are many. I am also the one that has to find financial resources, pay the bills, buy the groceries and prescriptions. So in reality the 3 nights I have off, I really don't. My sister thinks its enough she's there 3 nights to let me get some rest..Weekends during the day,I'm usually there to give him a break as I can see this is wearing him out. It doesn't make it much easier that he is impatient and stubborn and was use to being waited on. He now realizes all that mom did for him as he is having to learn to take care of himself and I refuse to baby him if he is capable of walking and moving around. I happened on your blog and have got to say I feel a lot better now knowing I'm not alone. I will check in from time to time to see what new advice you have for us.

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  6. Thank you for posting anonymous, I am glad you found this blog. I also have another site that I am developing to be of help to caregivers, Caregiver's Respite - Green Pastures Still Waters, a place to find rest and relief, I hope you will visit that site as well. I also recommend caregiving.com and Denise Brown the founder of it. It is an excellent place to share and also find answers to your caregiving needs. You are not alone in this, we are many and there is alot of common ground that we share. I hope you stop again soon!

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  7. This is the address to the other website, http://caregiversrespite.ning.com

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