Another tired and frustrated newbie

Andrea W

Hi Everyone:

I am a new member and happy to have somewhere to connect to other caregivers.

My mom has stage 4 cervical with mets to liver, lung and spleen. She is currently undergoing chemo for a second time....carboplatin and paclitaxol (sp?) once every three weeks. She wants to have more time and is so not anywhere near ready to go. I am not ready for her to go either. We are both tired of this crap though. She is in and out of hospital. She got readmitted over two weeks ago with a blood clot (DVT), then she got shingles in the hospital, and how she once again neutropenic. She is still there now. It's always something new. She was doing okay since her latest treatment a week ago but today she was in SEVERE stomach pain; 16 mg of dialotid (sp?) through out the day did not do the trick. She's always had stomach issues but it got much worse right after chemo but today was WAY worse. I dont know what's going on now....maybe its a bloackage, I dont knwo what this poor woman is gonna have to go throught next. Then today she said she felt like she was getting the flu. Great. The hospital staff are so not helpful and I have to chase them around all day trying to get her pain or nausea meds and to tell them what's going on. It is sooo exhausting.

I honestly dont feel like I can do this anymore. I am at the hospital all day everyday and only sometimes get away to do errands, to eat, or do school work. I quit my job, left my boyfriend and moved back here (I am in Canada actually) to help her. There is noone else to be her caregiver but me. Thankfully I was doing school by correspondence so I didnt have to quit that but I am falling way behind and it's really a huge extra stress for me.

I feel so bad for feeling sorry for myself.....if I am tired, I cant imagine how she feels. This disease is just so disgusting. So many of you seem to find some relief from your faith in God. I find myslef angry a lot, at God. Sometimes I question his(her?) existence....how can there be any sense in any of this crap. It's just far too much suffering......far far too much.

I am burned out, and yes depressed, of course. Mostly I am angry.

Venting helps, especially when I know its falling on understanding ears, so thank you all so much for listening.I hope I can do the same for some of you.

Andrea

soccerfreaks

Take a load off Annie
Welcome, Andrea!

As I have said many times before, the membership requirements suck, but you will find that the members of CSN are kind, warm, gentle, intelligent, and informative.

The fact that you have come here means that you are striving greatly to find answers for your mom, and I, for one, appreciate that effort greatly. I say with total conviction that the caregiver/lovegiver has it harder than the survivor.

As a survivor myself (twice) I have been through some of what your mom is experiencing or has experienced. I have had taxol and carboplatin, for example. I have had rather severe DVT in both legs. I have experienced low platelets and low white blood cell counts. I have even been told, erroneously, that I had but 10 months to live.

Stage 4 with mets to the liver, lung and spleen is a very serious place to be Andrea, I cannot lie to you. It is NOT the end of the world, but it is pretty rough stuff. I am sure your mom knows that.

In the meantime, this is really about you at the moment, and that is okay, too. What I say to caregivers: you can't give good care if you do not take good care of the giver.

You need to find an occasional escape. Even my wife, a nurse, who was with me night and day, got 'kidnapped' by her friends from time to time and hustled off to a restaurant for lunch or dinner, maybe even a drink.

Whatever it is that relaxes you, you need to make time to do that, to care for yourself, so that you are not so frustrated in caring for mom. You will both see a positive difference as a result, I would bet.

Do not expect more of yourself than you can deliver, and DO make every effort to make sure YOU are feeling good.

Both of you will be happier for it.

Best wishes to mom and her family, with special thoughts to you, Andrea, for being a heroine for us all, and especially for your mom.

Take care,

Joe

slickwilly

soccerfreaks said:

Take a load off Annie
Welcome, Andrea!

As I have said many times before, the membership requirements suck, but you will find that the members of CSN are kind, warm, gentle, intelligent, and informative.

The fact that you have come here means that you are striving greatly to find answers for your mom, and I, for one, appreciate that effort greatly. I say with total conviction that the caregiver/lovegiver has it harder than the survivor.

As a survivor myself (twice) I have been through some of what your mom is experiencing or has experienced. I have had taxol and carboplatin, for example. I have had rather severe DVT in both legs. I have experienced low platelets and low white blood cell counts. I have even been told, erroneously, that I had but 10 months to live.

Stage 4 with mets to the liver, lung and spleen is a very serious place to be Andrea, I cannot lie to you. It is NOT the end of the world, but it is pretty rough stuff. I am sure your mom knows that.

In the meantime, this is really about you at the moment, and that is okay, too. What I say to caregivers: you can't give good care if you do not take good care of the giver.

You need to find an occasional escape. Even my wife, a nurse, who was with me night and day, got 'kidnapped' by her friends from time to time and hustled off to a restaurant for lunch or dinner, maybe even a drink.

Whatever it is that relaxes you, you need to make time to do that, to care for yourself, so that you are not so frustrated in caring for mom. You will both see a positive difference as a result, I would bet.

Do not expect more of yourself than you can deliver, and DO make every effort to make sure YOU are feeling good.

Both of you will be happier for it.

Best wishes to mom and her family, with special thoughts to you, Andrea, for being a heroine for us all, and especially for your mom.

Take care,

Joe

Caregivers
Andrea. Joe "soccerfreaks" covered the main issue which is taking time for yourself. Having been on both sides of this I can see that your at the burn out point. You proubly feel that you can never do enough. Or you might be putting blame on yourself for any number of reasons. That is all perfectly normal in your situation. No one can doubt the love that you have and no one has the right to second guess your decisions. You have already given so much of yourself and you have the respect of the people here. Many parents or individuals don't have someone like you in their life. Some of us here have our beliefs in God and some don't. And I think everyone has a time in their life when they wonder why certain things happen. But you will work towards those answers over time and I doubt anyone here will judge you based on your thoughts about Religion. We are here to support you so please vent as much as you want. Having anyone that we love going through this is life changing. When we can't get answers from the doctors or staff its frustrating. None of us want to see anyone in pain and your doing great by making sure there is a comfort level maintained. Having had cancer I can say that controling pain and maintaining some sort of dignity is very important. Having someone there to say they love you and getting a hug or even a hand on the shoulder is sometimes far more important than any treatments. I have three daughters that are great human beings. Your mother has a daughter that is loving, caring and giving and is truly blessed to have you in her life. You will be in my prayers like everyone else on the discussion boards. Please take a little more time for yourself as Joe recommends. Its so important to maintain your own physical and mental health. Hugs and prayers Slickwilly

missingmyfriend

TIRED OF BEING TIRED
ANDREA,
I FEEL YOU MY MOM PASSED 4 YEARS AGO FROM LUNG CANCER I WAS HER ONLY CARE GIVER AND ONLY CHILD WITH AT THE TIME 3 YEAR OLD GOING THROUGH A DIVORCE AND HAVING TO TAKE CARE OF HER AT HOME , I HAD A BED IN THE LIVING ROOM BECAUSE OF THE STAIRS AND I SLEPT ON THE FLOOR NEXT TO HER WITH MY DAUGHTER WORRIED SHE WOULD GET UP OR ALL THE TIMES SHE WAS IN PAIN NEEDING TO GET UP ALL TIMES OF THE NIGHT , I WAS VERY TIRED , I KNOW HOW YOU FEEL ABOUT BEING MAD PART OF IT IS LAKE OF SLEEP AND THE OTHER PART IS FRUSTRATION GOD ONLY PUTS ON YOU WHAT YOU CAN HANDLE AND BELIEVE ME YOU ARE A STRONG PERSON , JUST ENJOY THE TIME YOU HAVE RIGHT NOW I WOULD GIVE ANYTHING FOR 5 MINUTES MORE LOVE HER AND TREAT HER WITH THE DIGNITY SHE DESERVES , REMEMBER YOU ONLY HAVE ONE MOM . STAY STRONG FOR THE BOTH OF YOU !