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wishingstars
08-12-2011, 05:56 AM
About 5 or 6 years ago my mom was diagnosed with Lupus. Ever since life has been a rollercoaster and sometimes I just feel so overwhelmed, I hate being around her when shes sick but then I feel so useless and awful that I'm not helping her. Its just me my mom and my older sister who is in university so she isn't at home most of the time. I'm fifteen and sometimes I just feel so overwhelmed with everything and I feel like I just can't cope. :'(

steve.b
08-12-2011, 07:00 AM
hi wishing star,
i am 50 and live in australia.
i am sorry you have this rollercoaster.
i am unable to offer any practicle assistance, but i have 2 ears to listen with.
it is never easy when you are unable to help. but being there is helping. emotional support is just as important as physical support.
without you mum would not have anyone, or any reason to try to get better.

you are important to your mums health.

Elo
08-12-2011, 07:25 AM
Hi there wishingstars - welcome to the forum. I'm sorry that you've had to find us :( Dealing with someone who is sick (especially all the time), is really hard to do. I think the hardest part is probably wanting so badly to help them, but not being able to do anything. I'm sorry that you've had to go through this... but your mother of course must love you dearly and be so thankful to have you in her life. There's really not much you can do except to try to understand that its out of your hands, and the best you can do is be supportive. Just be there with a gentle hug, a kind word, and maybe a goofy movie when she feels down. She'll appreciate it greatly (:
Try not to worry about it so much... while it is very scary and worrisome, it shouldn't consume your life or make you feel so bad. You're a teenager, so you should try to be at least relatively carefree :)
Your mother wouldn't want you to be so overwhelmed with this - all parents want their children to be healthy, happy and safe. She wants you to be happy and carefree - and i'm sure she feels sad that she's not able to be a normal mother for you.
Anyways.... sorry if i've talked to much. I really hope you like it here- i'm wishing you the best.
When it gets really bad and you feel really overwhelmed, just try to take it one day at a time, one minute at a time. Don't try to bite off more than you can chew, or be scared by the big picture - just focus on whats right in front of you.
Welcome, again!

wishingstars
08-12-2011, 12:51 PM
Thank you guys so much for the replies. You have honestly made me feel better by being so supportive- I'm glad I came across this website. Reading your replies brought tears to my eyes and I honestly cannot thank you enough <3

debbie-b
08-12-2011, 01:17 PM
You are a good person, to care enough to join the forum, just for your mom.
You are awesome.
We have had much older people than you, on this forum, saying that they can't cope, with their loved ones illness. It is not easy.
So if you need to talk or just vent, come here, we always have an open ear and sometimes good advise.

Debbie

tgal
08-12-2011, 06:12 PM
Hi Wishing Star. Welcome to WHL

I am an ill mother of a 16 year old daughter. As difficult as this disease is on me I believe it is more difficult on her. I do my very best to make sure she gets to go to all of the teen age things but teens shouldn't have to take care of their mom/dads. It says so much about who you are as a person to come here for support. Most teens wouldn't do that. Your mom is very lucky (as am I).

You also need to know that it is OK to get angry about the situation. You wouldn't be normal if you didn't. There are times that we (the ill person) get angry and you deserve no less. Find a place to scream, cry or yell. You need to get it all out or it will tear you apart. One you have it all out then you can go back home and do the best you can do.
As much as I hate to admit it I sometimes take my pain and/or frustration out on my daughter. I snap when I shouldn't and then I feel so bad! Just know that she loves you and she really does appreciate all that you do. You may want to sit and talk to her about things that you feel you are missing or things that you want to do (school stuff or simple things with friends). Sometimes our illness makes us forget important things and our kids are VERY important!

Once again... You are an AWESOME daughter and she is lucky to have you

Gizmo
08-12-2011, 08:01 PM
Hi Wishingstar. I have lupus and have two daughters, one is 22 and healthy, the other is 19 and more ill than I am. It's really tough to be a caregiver, especially when most of your friends only have to worry about themselves, and boys and parties and grades and getting a drivers license. Being around someone who is sick isn't any fun - even if you love them more than anyone else in the world. You want them to be healthy and to be able to take care of themselves so that you can do the things in life that you want to do. My teenage years were the hardest ones of my life, and my parents were healthy.

You need to surround yourself with people who are supportive of you. Do you have older people in your life that you can talk to about this (grandparents, neighbors, people from church, a friend's mother) so that you don't feel so alone? Does you school have counselors that you can talk to? Someone is always around here that you can vent to, but I think you need some mentors who can give you a hug, offer you a warm cookie or help you with resources if your mom needs more help than you are able to give. Your mom does need you, and maybe if you are getting more support yourself you will feel more comfortable being around her when she is sick.

MaryS42
08-13-2011, 12:27 AM
Hi All quick update on Alan at present he's having between 3 and 5 seizures daily,neurologist coming to see him on Monday but the good news is they said he wont get out of hospital this time until they find out whats causing the seizures and if it is Lupus attacking his brain as they suspect then they'll treat it and hopefully get them under control at last.Hope everyone is well take care M.x.

lovedbyHim
08-13-2011, 01:26 AM
Hi wishing star I didn't get a chance to welcome you. Nice to have you here!

I'm sorry you have to carry so much in your heart for such a young woman. I truly believe its harder for those who have to watch than those who suffer. Will you do me a big favor? Will you find time to play? Will you make time to go out with your friends and laugh your head off? Try to find time to be a crazy teen every day for a little while. I know if you were my daughter, I would want that for you. I wouldn't want my disease to affect your life. Helping your mom is truly a blessing for her, but I know she wouldn't want you to lose your adolescence doing it. Caregivers must take care of themselves first. Does any of this make sense dear?

bunny28
08-13-2011, 04:54 AM
Hi Wishingstar!

I agree with all the other posters. You are a caring, compassionate daughter. YOu are so sweet to want to help so much. I understand wishing that you could do more to help. You are full of compassion and you are so normal to feel overwhelmed the way you do sometimes too. Anger is also normal. Frustration is also normal. I am a mom of a three year old but I worry about him knowing too much about my disease as he grows up. As others have said, I want him to be a kid. I am sure that is also your mother's wish for you. At the same time, I was a teenage daughter with an ill father and I wanted to help...but somedays I also wanted to scream. That's okay. You love your mother or you wouldn't care soo much. Can I tell you a secret? I bet somedays, being sick makes your mom angry and frustrated too. It has affected her life and she knows that it affects yours as well. As moms, that upsets us. I bet your mom wishes that she didn't need help when she is sick. Please do as others have said and allow yourself some time out (guilt-free). Caregivers do need to take care of themselves...or they are no use to their "patient". Thanks for caring like you do.

wishingstars
08-13-2011, 06:44 AM
I would just like to say thank you again to everyone, you have all been so welcoming and caring and I really appreciate you listening to me vent, I will take your advice and try to take some time alone for myself. I hope when the time comes I can be just as supportive as you all and I wish you all the very best and thank you again. <3