3 replies to this topic

[TheCHick]

Hi, I'm Claudia, 24, I'm the youngest of 11 kids and we are all from the same parents, I don't have a dad because he died in a car accident about 16 years ago. And my mom and I were in a major car accident 11 years ago and that accident we came out just bruised and swollen and that was our first encounter with the jaws of life. I guess I'm giving you this as a background so you can understand me a bit more.



We were on the freeway last June and the front tire blew as well as something went wrong with the breaks we ended hitting the inside of the over past and rolled. I was the first person to call 911 and then my family from a hanging position. When the ambulances, firemen and police got there, I wouldn't let them take me out cause my mom was really scared and she had a language barrier and couldn't communicate very well. And I've been with her ever since. We were extremely close before the accident and now I'm her fulltime care giver. I truly love her and don't mind taking care of her BUT...yes, I said but how or when do I get a break?

　

I spent the next 10 months sleeping in a chairs in different hospitals all across California and we finally came home this March but now I'm her full time caregiver and honestly it's hard. We have a huge family but I'm mainly the only one that takes care of her and it can be very difficult at times. She a quad and has no movement below her chest and is able to move her arms but has no movement in her fingers so I have to do everything for her. But I love her and I prefer having her at home even when it get difficult then to see her in some home. The State pays me to take care of her for four hours a day. My family always has excuse when I ask for help but at least I know I'm getting the memories and bonding from this.



We are 5 brothers and 6 sisters and I'm the only one that takes care of her, two of my brothers live out of the country and the other 8 don't help because they have their own lives to live and have their own family needs to meet. I understand that I'm the only truly single one that has no kids or significant other and that's mainly there excuse to why I should do it. I have four siblings that don't live near us and I understand that it's difficult for them to commute 3 or more hours to take care of her but not even when they come to visit her do they help. They say they are afraid and make her feel uncomfortable and horrible. Once they leave she'll cry and become very frustrated and I understand that because they make me frustrated how they behave, when she has done so much for us individually and as a whole family.



The three sisters that live near by really help at all. One has three small kids and was pregnant when the accident happened and was really sick through it. I'm not heartless and wanted her there the whole time my mom was in the hospital. I understand. And the other two are single but with significant others and honestly don't help and it's so frustrating when the only difference between them and I is that I don't have a boyfriend but I have all the responsibility....GRRR! it's so frustrating. I've gotten in arguements with thema bout not helping and one said to me well ypu are the one bgetting paid to care for her. AND I swear I've never wanted to hit a sibling like I did at that moment! I get paid to take care of my mom for four hours a day. And I with her all 24hours a day even when she's sleeping. I sleep on a twin matress in her room because she has a trake and can't speak loud enough for someone to hear he with the oxygen and humidifier on at night. I wake up early to give her her meds, breakfast and do the house work, and excersice her and everything in between the day that leads to her BMP at night and putting her to bed and they do nada.



I dropped everything since the accident because my mom was truly in a critical state and she's the most important person to me. I'm pretty sure she would have done the same for me if the situation was reversed. Plus, she raised us all with the same belief that family was first and we must help each other and one day we would take care of our parent as they had taken care of us. AND I just don't understand how can my siblings not help or remember family is first??? That she is important and they should be more considerate to her and her needs.

I gave up school because I didn't know how long I was going to have my mom around after the accident. I was a Senior and almost done with school and I don't regret it at all. AND I went back this past Aug. as a full time student but at nights because everyone knows professors hate staying the full four hours. and it was extremely hard having someone to take care of her on the nights I had class. But my 17 year old nephew whom I'm a legal guardian stepped up and took care of her a couple hours here and a few hours there. I successfully completed my semester but I'm looking forward to the Spring semester. Being out of the house for about 2 hrs a night gave me something else to stress about but the ability to not think about any home responsibilities.



Some days I wish I can just go out shopping, watch a movie, have a b.f, hang out with my friends and go on a spontaneous roadtrip with my chickies. But I can't cause I don't have someone to take care of my mom and or I don't have the time. Some days I wish I could go to theraphy of some sort but once again no time. I went back to school so I can finsih my degree and somehow get paid enough to have someone help me more with her and it would give us more away time and help us when we get frustrated with each other, I know my mom can be a big'o brat and that might be my fault because I spoil her a bunch. Everything she wants I give her and I still see her as my mom and she's the boss cause I want her to have control of her life but some days she makes it hard. What makes me mad is that she is still the mom and she won't tell my siblings to help even it they are around for a few hours. And if she wont ask for help to at least be consider it of me and want to go outside and do things. Like, shop, go visit frnds and family, go out of town and most of all stop wanting to eat cereal at all hours of the day....not healthy at all. GRR!!!



All I ask her is the opportunity to grow with me and move forward with me. I'm not willing to leave her behind like she never allowed me to quit or be second best. I'm not letting her stay behind and be a brat and be stuck in this stage of not wanting to do anything. i'm very bless to have her. I would be lost with out her she's my mom.



So that is my rant of 16months of frustrations.Thanks for reading,

Chick.





P.S. Please don't say she's lucky to have me that is the number one thing I hate to hear cause it's our duty as kids to take care of our parents.
And I would love a full 8hrs of night's sleep as a Xmas gift but no one to ask.....And I wouldn't have complained but it's my sister's night to sleep in the same room as my mom but she just got here...she's so considerate!...that I justr needed to get my vent on and or I probability would have never posted this.

[wheelchairbling]

Oh goodness, honey, you need to rant! You're pulling three shifts a day, not getting enough sleep, and doing serious nursing care. Of course you're worn out. But I'll tell you one thing: you're a good daughter, an excellent daughter, and you deserve lots of hugs

Okay, let's think how to get you more help. It sounds like most of your family isn't comfortable with nursing. So over the course of a few days, write down all the non-nursing chores that need to be done - laundry, shopping, home repair, cooking, etc. Give specific requests to specific people. Maybe they'll be more receptive to small, manageable requests.

With such a large family, try raising enough money for a home care nurse for a couple of days a week. Think about who could contribute money regularly. Point out that you aren't going to last forever at this rate! If the cost is spread over enough people, it won't be burdensome for anyone.

Draw on non-family resources. Talk to your mother's friends, her church, your siblings' friends and churches, etc. Ask people for specific things off your list.

Google your state name plus respite care, and center for independent living. Ask those folks what help is available in your area.

Well, that's a few ideas. More hugs now!

[S&W Winger]

You have gone above and beyond duty...the rest should be ashamed, but you cannot shame people into doing the right thing sometimes...so if you are truly on your own, then do not mention the large family...

Contact the Brain and Spinal Cord Injury Program for your state (CA?)

Also the Coalition for Independent Living

- there should be a case worker from your local program(s) to assist you with coordinating care for your Mom

- there should be personal care for your mother

- as her primary carer, you should receive PART of the salary for caring for her...I say part because you also need help coming in in order for you to finish school and have a Life

- there may be other programs depending on your location, but CIL will assist with getting you in touch

You need to take a break before it breaks you!

Please let us know how things are going...

Edited by S&W Winger, 18 December 2010 - 02:50 PM.

[Tetracyclone]

claudia,

Good rant, girl!

You need to realize that because things have changed your roles have changed. Your mom is no longer your mom, she is the lovely lady who can give motherly advice but now you are in charge--- simply because you are.

When your sister comes get used to stepping out for longer periods. JUST LEAVE. Go for a walk, do something, and give your Mom time to learn to ask othewrs to do things.

Next stop spoiling her. Make sure both of you are getting considered. maybe she has to wait for something because you need one hour to do X, Y, or Z. maybe Z is take a nap.

You are an adult now and , must get over the idea that you must do as your mother asks. She raised you to think for yourself and be strong, and now, even though you are tired all the time, you should think carefully about how to use that strength.

Wheelchairbling gave some really good ideas. Just take your time, think, then stick to your decisions. I am really glad you found time to post. This is the beginning of good things.

Good luck, Supergirl!