feeling lonely, stressed, and scared
Comments
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Hang in There
First, I am so sorry you are going through this. You are mourning the life that was as well as trying to do everything. Supermom is a myth. None of us can do it all. Get help. Turn to your support system of friends and family. Tell them you need help. Many of them probably want to help. Reach out. Of course you're scared. Your husband is scared, too. It's ok to cry. Talk to your husband, too. Ask him if some of his friends might be willing to help out - just sit with him for awhile. Is childcare available for maybe just one day a week? Take the kids to Grandma's for a day. You need a plan and it can't be you doing everything. If you don't take care of yourself, you won't be able to care for others. Hugs, Fay
P.S. Everything you are feeling is normal. You are not alone.0 -
On giving care
Fay and Sherri are spot on in their replies, of course. The one thing they both say implicitly but not directly through their excellent advice is this: to be a good caregiver, you have to take good care of the giver.
I say that to you as one who has been on the other side of the bed, so to speak, understanding that my wife was an absolutely wonderful caregiver for me (she prefers 'wife' to 'caregiver' for some reason
), and recognizing that her friends probably saved her sanity every time they hustled her away for a group lunch or dinner.
It is CRITICAL that you take care of yourself, in other words, without feeling any guilt, aware without doubt that what you do for yourself you are doing for your husband and your family as well (within certain moral boundaries of course).
Do accept that meal rotation if available. Do permit others to create and schedule a transportation committee (I had a bunch of moms from soccer teams I coached in the past arrange to take me to rad treatments, wait for me, and then take me home, my wife attending only those critical ones where I met with docs). Do arrange a babysitter so that you can go out with the girls to the movies or to dinner or whatever it is that you enjoy doing.
But TAKE CARE OF THE GIVER. Otherwise, you will eventually discover that you are not so good at caring for your loved one either.
Best wishes to husband and his family, particularly to caregiver number one.
Take care,
Joe0 -
God bless you!
Everyone is right - you need to take care of you. Easier said than done. Trying to set up a network of support or help takes time out of your already impossible schedule. Start with your mother-in-law. Have her over for coffee and tell her you need her help. Ask her if, minimally, she can come over and stay with the family once a week so you can go out somewhere. Even if you go to a movie alone and sit in the dark and cry! Call your local hospital and see if they have any support groups. You need to talk about your feelings and they are NORMAL feelings. Also see if there is someone who can come and talk with your husband. He too needs some support - from an avenue of perhaps cancer survivors. As for the children - talk to your husband and see if you can schedule some 'family time' (even if it's just 15 minutes) when the kids can be with dad to watch a movie or something. You are living life on a roller coaster now - I wish I could do more than just offer words.0 -
Nicole
I just saw your post. I am the caregiver for my husband who has Stage IV colorectal cancer. Yes, the chemo drugs will make him cranky, especially if one of them is a steroid. Not much you can do but let it slide off your back, not easy, but doable. You mention that you are spending a lot of time keeping everyone in the loop and a controlling mother in law. Your husband hears you on the phone and that is not good for him. Maybe setting up a caringbridge site that you update and everyone can look for updates will help. Constantly on the phone talking about cancer is not good for you besides, with 2 young children your plate is already full. If not a caringbridge site then perhaps an email to everyone once a week with a update would work. I do the e-mail thing when there is news to share. You miss your old life and that hurts but that does not mean you can't do things with the girls. If your husband is too weak to join you then go by yourself with the girls. Ask your mother in law to come over and keep hubby company. Try not to be too hard on your mother in law, no matter what that is her baby and her baby is hurting. You are not alone, as a caregiver, I know just how hard it can be but you are right, most people simple do not understand. You said your husband has always been a pillar of strengh and now he must draw on your strength. You have more strength than you know, it is deep inside. Although your husband has the cancer, you are living the cancer, most people don't get that except other caregivers. Keep us posted on your journey, take care - Tina
PS - If your mother in law drives, ask her if she could take your hubby to one of his treatments. That will give you a little alone time or time to get some things done and it just may make her feel useful as a mom. Just a thought.0 -
Thanks everyone!
Thanks everyone for listening and for the suggestions. I would love to go out with my friends it has been a very long time since I have, but now my girls are sick so I can't leave them with most people because they have kids too and would get them sick. My mom and his are too busy to watch them getting ready for christmas (I asked) so I have to just wait for 2 weeks since after christmas we are back to 5 days straight of 10 hours straight at the hospital getting chemo. It is so intense, he is down and out for at least 3 days after his last infusion. My Mother-in-law isn't so much controlling as much as she is a mess, I understand that it is her son and she is scared I get that. I have kids too and would be a wreck but I don't need to hear her tell me how she feels and asking me all the time if he is going to die. I simply don't need to hear it, I am doing all I can to be strong for myself, kids and husband. I would let others go to his infusions with him but he doesn't want anyone else to go, and I wouldn't want that either. This week he is starting to feel better and after talking to him about his moods, and my feelings that part has gotten better. We actually had a nice few days yesterday and the day before. I am now looking more forwards to christmas and then back at it again. SO I will be more prepared to ask someone for help at least once so I can go out with my friends for coffee or something. Thanks everyone for listening to me vent, it is also nice to know that I am not alone in this and not the only one who feels this way.0 -
Getting Betternicole1211 said:Thanks everyone!
Thanks everyone for listening and for the suggestions. I would love to go out with my friends it has been a very long time since I have, but now my girls are sick so I can't leave them with most people because they have kids too and would get them sick. My mom and his are too busy to watch them getting ready for christmas (I asked) so I have to just wait for 2 weeks since after christmas we are back to 5 days straight of 10 hours straight at the hospital getting chemo. It is so intense, he is down and out for at least 3 days after his last infusion. My Mother-in-law isn't so much controlling as much as she is a mess, I understand that it is her son and she is scared I get that. I have kids too and would be a wreck but I don't need to hear her tell me how she feels and asking me all the time if he is going to die. I simply don't need to hear it, I am doing all I can to be strong for myself, kids and husband. I would let others go to his infusions with him but he doesn't want anyone else to go, and I wouldn't want that either. This week he is starting to feel better and after talking to him about his moods, and my feelings that part has gotten better. We actually had a nice few days yesterday and the day before. I am now looking more forwards to christmas and then back at it again. SO I will be more prepared to ask someone for help at least once so I can go out with my friends for coffee or something. Thanks everyone for listening to me vent, it is also nice to know that I am not alone in this and not the only one who feels this way.
Sounds like things are getting better, good for you. When he is going to die is a horrible question, look at them and say "I don't know but not today and I am so thankful for that", and I don't wish to discuss it ever again. That should shut them up. Take care. Tina0 -
the worst thing caregivers can do...
is say stuff like this:
because he can't hear me cry. I have to stay strong for him and pretend like nothing is scaring me and that I can handle it all with ease. But inside I feel like a train wreck.
-----------------
you are entitled to cry in front of your husband -- you are entitled NOT to be strong 100% of the time -- you can't pretend that nothing is scaring you and that you can handle it all the time -- because u feel like a train wreck...
If you can't do those things for yourself AND your husband eventually you will be of no use to him or your kids
hang in there and talk to your husband and tell him you're hurting -- if your marriage is strong, it can handle it0 -
I feel your pain and i amnicole1211 said:Thanks everyone!
Thanks everyone for listening and for the suggestions. I would love to go out with my friends it has been a very long time since I have, but now my girls are sick so I can't leave them with most people because they have kids too and would get them sick. My mom and his are too busy to watch them getting ready for christmas (I asked) so I have to just wait for 2 weeks since after christmas we are back to 5 days straight of 10 hours straight at the hospital getting chemo. It is so intense, he is down and out for at least 3 days after his last infusion. My Mother-in-law isn't so much controlling as much as she is a mess, I understand that it is her son and she is scared I get that. I have kids too and would be a wreck but I don't need to hear her tell me how she feels and asking me all the time if he is going to die. I simply don't need to hear it, I am doing all I can to be strong for myself, kids and husband. I would let others go to his infusions with him but he doesn't want anyone else to go, and I wouldn't want that either. This week he is starting to feel better and after talking to him about his moods, and my feelings that part has gotten better. We actually had a nice few days yesterday and the day before. I am now looking more forwards to christmas and then back at it again. SO I will be more prepared to ask someone for help at least once so I can go out with my friends for coffee or something. Thanks everyone for listening to me vent, it is also nice to know that I am not alone in this and not the only one who feels this way.
I feel your pain and i am sorry. My husband is fighting colon cancer. Was stage 3 but just found a mass in his lungs and liver. I too at first thought i was the only one that should be with him at treatment but have since learned that his close friends and family want and need one on one time with him and this is sometimes the only thing they can do to feel like they are helping. It also gives me a break. i also joined a gym and for even an hour every other day i have someone sit with him and i go workout my anger, frustrations and sadness. Believe me, it really helps. We can make up a million reasons we cant go or timing is not right but we need to be a 100% for them, they are counting on us. I cry alot, vent alot and sometimes i do it in front of him. He says he needs to see that side of it from me because consloing me makes him feel like he is still protecting me. Our loved ones have cancer and need diff treatment i know. But they also need to feel as normal as possible and we are the ones that can give that to them. Good luck with everything and even though you feel like you are falling apart, I think you are brave and I know you will be just fine... Have a Merry Christmas... Melanie0 -
the shower
Nicole -
I do feel for you. My husband is suffering with lung cancer - just had his third surgery in four years and will start undergoing chemo on the 12th of January. That is, providing the MRI he's having on the 8th doesn't show it's metastesised to his brain. We occasionally go to therapy together and I did find out that he doesn't know how I'm feeling. I've been strong now for four + years and he was actually starting to think I didn't care. I was so busy being strong, he didn't know what I was actually going through.
So...I learned I can be strong an still let him know I'm scared and I'm sad and I'm angry. I want to lash out and scream - but the only place I had been doing any of that was in therapy and in chat rooms and on discussion boards. It has helped that I communicated. He was literally afraid I was going to walk out on him - and I'm a gentle, nurturing soul. It feels like I just can't do enough to make him feel the slightest bit better.
The cancer talks - it's loud. It makes a person show their darkest side and it's all understandable. You have to take care of yourself in all of this. I'm sure this has been told to you before, but even with your kids, you have to carve out some time alone - other than in the shower. Are you on any medication for depression or anxiety? The holidays make all of this even harder.
This place is here because no one knows what you're going through unless they're going through it too. I've got the chemo as a huge unknown ahead of me in the new year. What do we toast to? I'm trying health and happiness for a start. A return to normalcy. Even though it will be a new normal.
Keep in touch. And know he loves you more than you know right now.0 -
Thank Youappleyellowgreen said:the shower
Nicole -
I do feel for you. My husband is suffering with lung cancer - just had his third surgery in four years and will start undergoing chemo on the 12th of January. That is, providing the MRI he's having on the 8th doesn't show it's metastesised to his brain. We occasionally go to therapy together and I did find out that he doesn't know how I'm feeling. I've been strong now for four + years and he was actually starting to think I didn't care. I was so busy being strong, he didn't know what I was actually going through.
So...I learned I can be strong an still let him know I'm scared and I'm sad and I'm angry. I want to lash out and scream - but the only place I had been doing any of that was in therapy and in chat rooms and on discussion boards. It has helped that I communicated. He was literally afraid I was going to walk out on him - and I'm a gentle, nurturing soul. It feels like I just can't do enough to make him feel the slightest bit better.
The cancer talks - it's loud. It makes a person show their darkest side and it's all understandable. You have to take care of yourself in all of this. I'm sure this has been told to you before, but even with your kids, you have to carve out some time alone - other than in the shower. Are you on any medication for depression or anxiety? The holidays make all of this even harder.
This place is here because no one knows what you're going through unless they're going through it too. I've got the chemo as a huge unknown ahead of me in the new year. What do we toast to? I'm trying health and happiness for a start. A return to normalcy. Even though it will be a new normal.
Keep in touch. And know he loves you more than you know right now.
I will be praying for you through your struggles and that 2010 will turn out to be a blessing for you. It is very hard right now because he depends on me to be strong. He actually asked me to be strong for him. I mentioned to him that I would like a break for even an hour to go out with my girlfriends for coffee. My daughters are 1 and 3 and there grandmas are more than willing to watch them. The problem is that he flat out told me no, that he doens't want me taking a break, because he is afraid to be alone and no one not even him know what meds he needs or is on or what to do if he feels sick. I know it is fear of his that makes him feel that way. But what do I say to him to make him understand I need a break when he says to me "I don't get a break!" "It's only 6 more weeks of chemo" he is on a very intense schedule he goes 21 times in the course of 9 weeks and each time is for 7 hours. I go with him to every single appt and keep track of it all. I am handling things well, I don't feel like I need any meds, my daughters bring so much joy into my life and laughter! All I really want is to see my friends and vent to them because as selfish as it sounds I know that they care for my feelings more than anyone else and more than they do for Rick. I haven't been fully able to come to terms with the fact that he has cancer and that for the rest of his life (hopefully a very long one with me) we will have to worry about a reccurence and go through scans and such. The pressure feels like so much at times I want to unleash on whatever I can find to punch (like a pillow!) but most of the time I am with him or the girls. Thanks for listening, as I type this we are sitting in infusion right now and he is sleeping. Only here for 4 more hours! Then a day off for new years and back again. I know God has a purpose for all of this and I pray that when its done it will all be worth it.0 -
Nicole~nicole1211 said:Thank You
I will be praying for you through your struggles and that 2010 will turn out to be a blessing for you. It is very hard right now because he depends on me to be strong. He actually asked me to be strong for him. I mentioned to him that I would like a break for even an hour to go out with my girlfriends for coffee. My daughters are 1 and 3 and there grandmas are more than willing to watch them. The problem is that he flat out told me no, that he doens't want me taking a break, because he is afraid to be alone and no one not even him know what meds he needs or is on or what to do if he feels sick. I know it is fear of his that makes him feel that way. But what do I say to him to make him understand I need a break when he says to me "I don't get a break!" "It's only 6 more weeks of chemo" he is on a very intense schedule he goes 21 times in the course of 9 weeks and each time is for 7 hours. I go with him to every single appt and keep track of it all. I am handling things well, I don't feel like I need any meds, my daughters bring so much joy into my life and laughter! All I really want is to see my friends and vent to them because as selfish as it sounds I know that they care for my feelings more than anyone else and more than they do for Rick. I haven't been fully able to come to terms with the fact that he has cancer and that for the rest of his life (hopefully a very long one with me) we will have to worry about a reccurence and go through scans and such. The pressure feels like so much at times I want to unleash on whatever I can find to punch (like a pillow!) but most of the time I am with him or the girls. Thanks for listening, as I type this we are sitting in infusion right now and he is sleeping. Only here for 4 more hours! Then a day off for new years and back again. I know God has a purpose for all of this and I pray that when its done it will all be worth it.
My husband had head and neck cancer, which he fought for over 2 years. He passed away this halloween. During his chemo/radiation, he also was very afraid. He did not want me to leave for similiar reasons (meds? what if he became sick.. .) I ended up making a spread sheet for his medicines, where the time he took them could be recorded - also the dosages. When he was capable, he would use the sheet and take the medicines himself. Using this, my in-laws could watch him for a few hours while I ran errands, walked the dogs etc. He knew that they could follow his medicine sheet and I always had my phone with me if he needed to call - I had to leave my son's soccer game once because he would not stop vomiting. He ended up hospitalized, but I came home when my daughter called and took care of it. My long, rambling point is that you really need time out for yourself. It will make it better for you to handle what is going on now. With some reassurances, your husband will hopefully be ok with you taking a break. I am so glad now that I could spend time with Mike when I did. (weeks in the hospital, 8 hour long chemo sessions, 35 days of radiation. . .) But, I do know that I did need occasional time to myself. I used the time to think things through, try to relax etc. Please try to take care of yourself. You need to do it for your husband and your daughters. I will be praying for you ~Cheryl0 -
Heart to Heart
Now is the time to have a heart to heart talk with your husband. Explain that you need some time off so you can care for him and your family better. Ask him when would be the best time for you to have someone else sit with him. My husband did want me to stay with him during all drs. appointments and infusions. So we found other times that worked for both of us. Even if it's just for an hour to start, you do need to take time for yourself. Remind him that you will only be a phone call away and be sure someone he feels he can trust is there with him. Tell him that just as he needs you to be strong, he needs to be strong, too. In order for both of you to be strong, you need to take care of yourself. Blessings, Fay0
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