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A very special request


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Hey guys. Most of you know the emotional turmoil my family is going through and I have tried everything I can to help. I feel lost though.

I need your help!! Here is my request.

Please post something here that I can print out for my mom to read. You can include my brother and stepdad if you are so inclined and have time, but please write something about how the loss of control of things has made you feel as a result of cancer.

She is not able to come here herself for support and I used to read stuff to her all the time from this site, but these days, her condition is not like many people. However, we have all felt a loss of control at times and she needs some ideas to cope and knowledge that we have this loving cyber family who so understands many of the things she is going through.

Thanks in advance, I mean it. I truly do.

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Dear Dear Lori,

I am so sorry that your family is having to go through so much right now. I have a poem that I have found recently that gives me strength when I need it.

This Too, Will Pass

This too, will pass

O heart, say it over and over,

Out of your deepest sorrow,

Out of your grief-

No hurt can last forever.

Perhaps tomorrow

Will bring relief.

As certain as stars at night

Or dawn after darkness-

Inherent as the lift

Of the blowing grass-

Whatever your despair

Or your frustaration-

This too, will pass.

Grace Noll Crowell

Keep your courage and strength and know that I am praying special prayers for your family.

GOD BLESS!!

Jamie

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I'm not sure what you want or need here. I will just jot down a few random thoughts.

At one point in my life, when I matured, I gave God control of my life because I realized I was not in control of everything and needed help. When I really matured, I realized what I gave God is the illusion that I ever had control. Our faith is what gets Lucie and myself through the troubled times.

I like the Serenity Prayer: God give me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

What helps Lucie and I through all this additionally is the constant support of family, friends and even acquaintances. We are open to letting people help us. Don

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Thanks for your replies and to Kasey, your pm was so honest, I appreciate that. I read it to mom and she was shaking her head in agreement the whole time.

I went to my stepdad and told him that I had an idea to come up with some ideas of things she could control. He interrupte me saying, "Lori, it's fine and well what you saying, but you are not the one who gets called names and takes care of her. I just don't care anymore. I will take care of your mom, but I just don't care."

This worries me. I just don't see how he can take care of her if he does not care. If she tells me he let her fall down the stairs, what's to say it's not true bc he is just fed up?

When the going gets very tough (she has to be assisted to go to the bathroom even), would you guys think it is normal for him to have this response? She is very mean to him and my brother, but they give it right back.

I hope you guys don't think I am a whiner, but I just want things to be OK emotionally with her as everything else is not.

I am thinking of calling a cancer support group or hospice for some advice too.

This is killing me. I just want peace for her.

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I am thinking of calling a cancer support group or hospice for some advice too.

Excellent decision, Lori! Time to call in the cavalry - people who have dealt with thse family relationships for years.

Sounds like, for whatever reason - depression, personality - your step-dad is just not able to be a caregiver right now. So it's time, for your mom's sake, to make sure she has one who IS able. No put down to him - just reality. Everyone has their limitations.

What about visiting nurses? Does her insurance cover that? All of mine offered the service - someone to check in, wash hair, bathe, cook one in a while, comfort, listen. More support than medical are and every county health dept. has 'em.

I always remind myself that, while I may not be able to control something that happens, I CAN ALWAYS CONTROL HOW I CHOOSE TO RESPOND TO IT! I am in control of my mind, my thoughts, my feelings and nothing and nobody can ever take that power away rom me unless I give it up willingly. That gives me tremendous power and control over the way I experience life.

It's something you have to practice, to learn to do in little steps. Say, you want to drink a cup of water but suddenly your wrist is weak and the cup shakes. Water spills on you. Here's your choice:

"G*# da%n it! I can't even drink a glass of water. Look at me! I'm falling apart. Everything is going wrong. I'm helpless. I can't live like this. I can't go on like this! Now I don't feel like doing anything. Everybody just go away and leave me alone. Nobody understands."

OR

"Oh Cr#@! (inhale slowly, exhale) How stupid. Here, someone help me dry this up and get me more water. Can you help me hold the glass? Thanks. That is so annoying! Oh well, if that's the worst thing that happens I guess I'm doing allright, huh? Okay, so tell me about your day?"

Same stupid, annoying (and maybe frightenening) thing happened, you lost control of your body for a minute, but it's past and you're ready to move on to something that might actually make you feel happy instead of sinking doen into a spiraling blue funk.

It's not so simple. Please don't misunderstand that. You have to work at it every day. But one day, one moment it will "click in" and you'll realise how much better you feel about yourself and want to keep that feeling going.

Sending caring thoughts and strength to you, Lori, and your mom.

Leslie

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Lori,

I think calling hospice for help would be a good idea. They could give support to everyone. They have been there to listen to my Mom when she is at the end of her rope. I'm not sure if they will be able to help you if your Mom is receiving treatments. I know this is so difficult for you, we want to fix it but we can't. My Mom said yesterday that she doesn't even know who my Dad is anymore. He is so self absorbed, and she is so burnt out on caring for him. I pray that your family finds some peace during this holiday season.

Denise

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Lori,

This is a very difficult situation!

Seems to me that you are allready doing what you can. You offered your help and your advice, but if they won't accept it, what more can you do? You can't force them.

Don't have advice for you myself but hope that you'll get some good advice from others.

Praying for you and your Mom,

Ellen.

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Oh Lori,

You poor thing. I wish we could all come over and help make it better.

Is it that your step dad is just so frustrated with the situation that he's thrown his hands up. My husband gets that way at times and says he's done, but then he comes back around.

I think it is a great idea to call in the calvary! Take all of the help you can get!

Prayers are with you and your family.

Patty

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Well, I am not allowed to call anyone per Tom, SF. He is going to do it. When I explained that it is not a healthy situation, now he is peed at me. Meanwhile, she just cried and cried about how she feels trapped and how insignificant she feels. I asked her to come stay with me again and she said the boys would get on her nerves.

I need to turn this over, but how can I? This is her life. She told me that if all this verbal abuse and hatred is getting to me, to stop coming every day. I asked her to make a choice to just love us for her sake and she said she can't love a self-centered brother like mine. He was once her baby boy. I reminded her how self-centered I was at ago 20, but she says it not the same and went on about how rough they are on her when she has to move or get up. When I mentioned the nurse to her, she likes the idea, but did comment how Tom would not go for it bc of the costs. She was right..

Impossible!!!

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Dear Lori,

First and foremost, you need someone that YOU Can talk to and get some much needed support from. Please look into getting some counseling for yourself. There are counselors that work with Caregivers and that is what you need right now.

We can sit here and tell you until we are blue in the face that your a wonderful daughter and your a wonderful caregiver, and yet my dear, these are the words you need to hear from your mom. ((((LORI))))

But for what it's worth, you have been a wonderful daughter to your mom, and you have been a careing caregiver trying to make peace at any expense. You need someone that can help you to stay focused on what is important during this very trying time.

Let your SF do his part, and now it's time to take care of LORI! You are bouncing off the walls and rightfully so. Please PLEASE look into getting some professional help for YOU. HONEST I just KNOW it will HELP you NOW and LATER!!! (((LORI)))) All that's going on with your family has GOT TO BE LEAVING YOU FEEL LIKE, (your damned if you do, and damned if you don't?)

I pray you will look into some help just for YOU!

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I agree with Connie - take care of you, Lori.

Maybe try a little experiment. Set a time limit to stay out of the situation, like 2 days in a row. Let your mom know in advance and tell her this is something you need to do for your your own health. You have to get yourself out of a toxic situation for a little while and regroup. Tell her what time you'll check in with her again and stick to it.

Really commit to giving yourself this short break. They will all survive the two days and you will get a chance to rebound and get some mental and physical strebgth back. It may also interrupt any little "family games" that are going on - you may not even realise you're part of a game that includes blame and finger-pointing. Force SF and his family and your mom to face each other without being able to deflect their feelings off you or your brother.

Take care of yourelf, Lori. Really. You're an amazing young woman with lots to offer and share in this world. Don't beat your head against a wall - it's not helping mom (which is your real goal anyway) and certainly not you.

Take care,

Leslie

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Lori,

Can you check with your mom's insurance and see if it covers someone to come in and help with the care of your mom. If all else feels, go to her doctor and let him know what is happening. Tell him this is a confidential discussion and please not share it with your mom or SF...

You need some serious help here. Leaving your mom alone for a few days doesn't sound like a very good idea, especially after your SF's comment. You need some kind of support for you and your mom.

It was great talking to you. Please, please call the nurse at the doctor's office. I am thinking about your health too. You don't need this added stress and worry in your life. I know you love your mom, she needs you to help her. Just take the reigns and get her some outside help. Maybe things will change if there is an independent person present...

Please call me if I can help and leave a message or if I answer, I will call you right back. Any time day or night...

God Bless, prayers and hugs for you and family,

Hugs for Liam, what a little blessing,

Karen

Merry Christmas

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Hi Lori,

Please let your mom know we are all praying and thinking about her. Tell her a lot of us have experienced the medicines she is taking and we know the side effects. Especially the Decadron. This medicine, I can speak about from experience. I was a really awful person when I was taking it for swelling in the brain from mets. I would say things that were cruel and hurtful to my husband. Anger was out of control. Everything was black or whuite, no maybe's at all. I have been married for 20 yrs. and had never in that time spoken to my hubby with such anger. I was being controlled by the effects of Decadron. I was in denial about my diposition. It all went away after I was weaned. I am back on Decadron, but a small dose. It is and individual experience.

We want her to get well and past this speed bump in the road. Please let her know we care and are here for support to both of you and your well being. Bring mom to your home for Christmas eve and if possible have an open house and invite some of her friends for a little get together. Once at your house, maybe her and the children can bake cookines, even if they are Pillbury sugar cookies and all they have to do is put them on the cookie sheet and put in the oven and frost or sprinkle sugar on then after they're baked... :)

Maybe you can take mom to the beauty shop and get her hair done or maybe a manicure, help her to feel pretty, if not maybe you can fix her hair or give her a manicure. I know you are busy with the little guys. Maybe it will make her feel special and let it be your Christmas present to her. Maybe John can watch the children for a few hours while you have mommy and me time. Afterwards maybe you can have lunch, even if it is fast food (drive thru.) Let her know we are trying to think of things to get her out of the house and some place other than the doctor. These are just a few suggestions, I hope you don't mind.

Please keep us posted on how things are going...

God Bless, prayers and hugs,

Karen

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Lori, I don't think that I have any wisdom to share, as I have never been in your shoes. I think that everyone else has given you great advice - just wanted to let you know that I have been thinking of you and your family, and I hope that things begin to improve for you.

Hang in there...you are such a strong and loving person, you can get through this, but you have to be sure to take care of yourself too!

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Lori,

I don't know specific laws in your state, but I believe your mother can sign a Medical Power of Attorney that gives you -- and only you -- the legal power to make medical decisions in the event your mother is unable to do so. Given your stepfather's attitude, it may be a good idea to do that NOW rather than wait. If there are brain mets, you never know if there may come a time when she will become too confused to sign such a document.

My dad signed a Medical Power of Attorney that gave medical decisions to my brother rather than our stepmother. I can't tell you how grateful I am for that decision.

Every family situation is different, but your stepfather sounds like he's ready for this to be over, and, frankly, that scares me.

Hope I wasn't too blunt. You are in an incredibly difficult and stressful situation, and my heart goes out to you.

Pam

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