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Overwhelmed and scared

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

On the day I moved my mother to hospice due to her terminal breast cancer, the doctors called and told us my husband needed to go on a liver transplant list due to his Hep C. Mom died 3 days before Christmas 09, after six months of travelling to and from hospitals and nursing homes, working full time, and dealing with a disabled spouse. Three weeks ago, my husband was diagnosed with unresectable Hepatocellular Carcinoma (primary liver) and it's back to hospital/doctor/appointments and visits, plus the V.A is scrambling to update his liver status for the potential transplant.

I'm trying to find some serenity in all of this, and day to day, its not too bad. But I am so overwhelmed with the typical caregivers list of things to do...manage his meds, pay the bills, work full time, mow the lawn, etc. Some times I just want to feel sorry for myself, thinking I have to go thru this AGAIN, and then I feel guilty for thinking that way. He is vacillating between optimism and deep depression, and sometimes can be very difficult to deal with. I tell myself it's because he's scared and in pain too, but I just needed to vent about this to others who are going through the same thing. I have about 5 vacation days that I'm hoarding for when I have to go on FMLA, but no ability to just take some time for ME.

Friends have said "Let me know if there's anything I can do to help", and I have asked for help, as well, but I still feel so deeply responsible for EVERYTHING, and I'm tired of being responsible. Anyone ever think of just running away to Mexico and sitting on a deserted beach somewhere with an umbrella drink and no cell phone? I know theres no one answer for all of this, I just needed to get it out somewhere anonymously where there isn't any judgement. Thanks for letting me vent.

GregStahl
Posts: 188
Joined: Apr 2010

I feel the same way. Wife has IDC & DCIS and is undergoing chemo now. I get overwhelmed with all the things that need to get done. My 7 yr old is now in football...so thats 4 days a week at night, house stuff, lawn stuff, work (I work from home so makes it easier for all of us)....I feel overwhelmed and have little to no time to myself.

Running away for a day or two sounds great, but the guilt I would have wouldnt let me have any fun.

You need to vent, we are hear to listen.
Greg

grandmafay's picture
grandmafay
Posts: 1639
Joined: Aug 2009

Of course you are overwhelmed! You're human! All of us caregivers feel like we would like to escape at times. Sadly we can't because when a loved one has cancer, the family lives with it 24/7. Looking for little escapes was helpful for me when I was in the caregiving role. I had nervier read mysteries before but discovered I could escape into those. I read a lot of them during my husband's six year battle. I still read them on those particularly difficult days when I am missing him more than usual. You might want to try finding a hobby that can help you escape just a little. I know art helps some. I also did a lot of crocheting. Just try to find some time to do something you love just for yourself, take a walk, meditate, or whatever. Venting here is good. Come here regularly to do that. It is a good sounding board. Take care, Fay

junklady's picture
junklady
Posts: 88
Joined: Aug 2009

Penny, First, thank you for your offer of prayer and I send you the same. Yes, this caregiver job is overwhelming and we can't run away from it. Try to find some small thing to do for yourself. Write in a journal, I find that very helpful, good for venting. I have painted everything around the house, also am doing a personal painting. Some days I try to read a magazine, and just can't seem to open it. This job is so tough and no one can ever know, until they have walked in our shoes. We suffer as much as our loved one and it is hard to watch their pain and suffering, but we somehow have to find the strength from within. God will help us. Bless you. Keep coming here to vent. Take care.
Cynthia

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

My husband and I have been married for 27 years and I have been fortunate - always worked, but never had to worry about paying the bills, lawn was always mowed, trash taken out, etc.... now since the beast has come to visit, I am doing much of this. Right now he is able to do it all -but during Round 1 of throat cancer treatment I had it all for several months. He is having a biopsy Monday for a likely reoccurrence (doc told us he's as sure as he can be without actually seeing the labs), and it's all going to start again. I'm scared, as we went through a lot of our money when he was sick before. But I try to tell myself that all that is not what's important - but HEY, it is our reality... the bills have to be paid, trash taken out, laundry done, get to work, drive to doc appts, lawn mowed etc. Thankfully, our son has graduated from college and moved home, so I will have help with the physical chores.... emotionally, that's another story.

I hate cancer.

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

I can relate to this, Greg can do things but I worry about the smells hurting his breathing. So I am now trying to do the lawn , Cook. clean ,Trash, cats , dogs, so many little things that we just take for granite. I am not in the best shape, I have diabetes, Thyriod problems, Artificial leg. and much more. My body is really getting beatin down, and I can't let him know this cause it would hurt his pride. Some times I feel like I am running on empty. No family close buy , no friends , (few people "oh if you need anything ") then they run and hide. So you are not alone. Our Children are grown and live 3 hours away and 45 minutes away,. So Life is what we make of it.
Thanks you for listening .
Jennie

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

Just to post some gratitude. A friend is taking Mike to his V.A. appointments today--its about two hours away, and I have very little vacation time available--(burnt up all of the sick time already)So I'm thrilled that we are getting help! P.S. Now I feel guilty that I'm not going to be there. Sigh!

ms.sunshine
Posts: 710
Joined: Mar 2010

Theres no need. You're doing the best you can do, and thats all one can do. Taking a break and having time for yourself makes one a better caregiver (just my opinion)
Ask for help from those that offer, if you don't ask they don't know. If they won't help then you know not to ask them again. Also ask the cancer center if they have assistance programs. I know some places have volunteers that will clean your home. It's worth a try.
Wishing you and husband the best, take care.
Jennifer

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

I was on pins and needles all day, but everything went well, and I was able to sneak home for a power nap in between shifts. Sometimes I forget how nice it is to have some alone time. I will continue to work on being better at accepting help, too. and asking for it, as well.

Barbara53's picture
Barbara53
Posts: 658
Joined: Aug 2009

At first I felt guilty when my sister in law started taking on important caregiver duties for my elderly mother (ovarian cancer), but it was nothing compared to how I felt when I called Mom's good friend to ask her to accompany her to chemo. M thanked me so profusely for calling -- she almost cried -- because she wanted so desperately to help. When we let people into the circle of care, it usually works toward the good for everyone.

grandmafay's picture
grandmafay
Posts: 1639
Joined: Aug 2009

Guilt really is a wasted emotion and you have no need to feel it. During my husband's six year fight with cancer I discovered that people do want to help. I was slow to accept the help which was a mistake. I actually had people thank me for allowing them to help when I finally started doing it. As caregivers we need to help ourselves, too. Check with the American Cancer Society, too. I know ours helps with mileage. With gas prices what they are, that is a big help if you have to travel a distance. They also pay for tolls and parking. I hope the appointment goes well.

Jennie -I found that asking those who have offered to help to do specific things was the best. Often people don't know how to help or they think if you don't ask you don't need anything. Call them and say, "You know when you offered to help? Well, I could really use some help with the -------." Fill in the blank with yard work, transportation, etc. People feel good about helping but don't know how to do it. If you ask and they say no, as someone else said don't ask again. It is worth a try, though. Also, check with a local church or service club. Some of them have community projects with people who have offered to provide certain services.

Both of you take care of yourselves. Fay

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Fay,
Thank you so much. My problem is no one really ask us if we need help. One friend of my husband did after he realized I was mowing the lawn. It is not a easy job but some how I manage to do it. Greg is sick like now but there are days when he is just Greg. So it is hard to to ask when he seams to be doing well.
I think I see all these things that need to be done, men don't notice is as much, like the house trim and things.
Anyway We are not social people I think is our problem .

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

I know exactly what you mean when you see all of the things that need to be done. I'm learning to not look. For me, its a successful day if the beds are made and the dishes are done. When I win the lottery I'll paint the trim. LOL

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

WELL IF YOU WIN THE LOTTO ,YOU CAN PAINT MINE TOO! hAHAHA I WISH YOU LUCK.
I THINK IT IS THE LITTLE THINGS THAT REALLY OVER WHELM ME. I manage to do things but I am not as fast or as good as I was. I am trying to hang inthere with all of it. Can't wait til someone ask me if I need help! I think I am learning fast to (I hope) say yes Please and thank you.

PattyNC's picture
PattyNC
Posts: 65
Joined: Oct 2006

I see you have been on the head & neck site (as I have too). This is my first look at this site for us caregivers and it really feels like I'm in the right place.

Patty

Little_C
Posts: 23
Joined: Aug 2010

I'm so glad you are venting, it's the best thing you can do for yourself right now. I call my friends constantly to vent and sometimes I feel guilty about bugging them so much but if I don't vent I'll explode! Literally :-)
I know the weight of feeling responsible for everything and I'm always worried I'm going to forget something. I keep many lists. I also feel afraid to go anywhere and do anything. What if something happens while I'm gone? And I'm just talking of going to do errands and such.
So when I found this site (I'm a new user) I was so glad because now I can give my friends a break and still destress when I need too and keep a little of the worry at bay.

My husband is getting blood work today to prepare for his needle biopsy and then of course surgery after that. I'm trying to keep working and I keep hoping my boss continues to be understanding about missed time.
Hang in there!
Hugs to you and your family.

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

Boy you hit the nail on the head; especially in that second paragraph! A friend of mine from work gave me the number to a very good therapist. I made an appointment today. Actually, I'm feeling okay, a little less overwhelmed, but the next CT scan and round of labs has been scheduled for the 7th. I have the feeling I'll be grateful I made that appointment!

Little_C
Posts: 23
Joined: Aug 2010

I've used therapy myself and it has helped me in the past when trying to deal with my sons disability. It helped tremendously. I was thinking of going again now but I have to wait because as you know even with insurance, deductables and copays add up. But I think in September I'll finally be able to swing it and I am looking forward to it. Nothing like a neutral party sitting there and listening and being able to comment with none of the baggage that those close to you may have. It helps bring clarity at a time when fear and anxiety clouds your mind. Good luck with everything. I'll be thinking of you when I go to my appt. :-)
Take care.

grandmafay's picture
grandmafay
Posts: 1639
Joined: Aug 2009

I can highly recommend a good cancer support group. Ours really helped both of us. I made lifelong friends there and continue to go even now. The ACS usually has a list of these or check with your dr. I also was blessed with a great massage therapist. I started going to her before my husband's dx for my fibromyalgia. She practices out of the hospital and also happens to be one of the leaders of the cancer support group. My hour with her was like therapy for both the body and the mind. I think the massage alone is helpful though. Besides, it was something I did for myself every couple of weeks. Take care everyone, Fay

grandmafay's picture
grandmafay
Posts: 1639
Joined: Aug 2009

Double post

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

Yep - that's me. My husband has hypopharyngeal cancer and I try to post on both boards. I have learned SO much about dealing with side affects, surgery, etc. from those kind folks on that board.

It sucks that we have to be here, but I'm so glad both boards are here for us.

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

So sorry that the cancer is back, Kimmy. I know the news wasn't unexpected, but that doesn't make it suck any less.I'll stand with you and believe that the surgeons hands will be skilled and guided by God. And even though it's anonymous internet support, we're still here for you.
Penny

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Kimmy, same here , we had one year that seam so good well from May till Feb this year now his throat cancer t4n1mo Larynx mets to both lungs. They are doing Chemo and after the first two rounds of Chemo (Carbosplatin) it showed one tumor gone and the other 3 had gotten smaller by 30-40% . Fear is till there but so is our hope, Greg my husband goes back Sept 9 before his next round they well do another Ct scan to see if they are still getting smaller. I know we are hoping they are. That is the best we can do right now. Hope. I am not a religion person , So saying I will say a prayer is hard for me to say. But I do try . For me I asked god for peace. It is the only thing I can think of .
So for now I will hold your family in my thoughts with hopes for the very best I can.
Peace
Jennie

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

Well, I went to the therapist yesterday. She was great. I don't know how the process of telling a complete stranger works to help so much, but wow, it really does. As I was telling her about my experiances over the last year, she was able to sum up in a nut shell some of the feelings I hadn't been able to verbalize. She wasn't your typical "And how does that make you feel" therapist, either. She was able to give me some concrete suggestions and resources to start being able to help myself. One of which is to get to my PCP pronto and request a mild antidepressant. That's an idea I've been mulling over since my mothers passing last Christmas, I called to make that appointment, as well. At the end of the session she asked me if I wanted to come back as a regular patient, and I made an appointment for next week. I'll squeeze the copays out of the budget somewhere. Just being able to take some positive action improved my mood.

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

I'm all for therapy and chemical intervention! Glad the therapy session was a positive one for you. I went to the pcp and got a mild anti-depressant last week and it seems to be helping me a bit (she said it will take a couple of weeks for full affect). Hard to tell, but I don't seem as emotional, and I'm not a zombie so that's a good thing.
I hope you can get what you need from your pcp.

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