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Feeling tired, frustrated, ignored, and selfish

LSW
Posts: 2
Joined: Jan 2010

I guess I'm realizing I need to talk to other caregivers to get some perspective and encouragement, so here I am.

My husband has rectal cancer (his dad died of it at age 54). He's had chemo and radiation, then surgery. Node positive, so off to some more aggressive chemo for four months. Some growths in lung are being watched, but not labeled as metastasis yet. Hopefully once the chemo is over, he'll have a 3 month "break" and then have the reversal surgery for the ileostomy he has now.

He's a very social person and surrounded by people giving him lots of encouragement, attention, gifts, etc. He has a great job that is flexible and letting him have whatever time off he needs during this cancer fight. I'm grateful for that.

But, I'm slowly becoming a wreck. I am just realizing that I can't do everything and that I will have to give up writing my dissertation and possibly my whole doctoral program. It's not like I can take a year off and pick it up again. New research and literature come out all the time and I would need to include that and start my writing again. I feel like that part of my life is atrophying and slipping away. I spend so much time at the hospital and cancer center with my husband (which I want to do). But I also lose hours each week to dealing with the financial aspects and insurance companies, etc. And because he cannot do things around the house, I am trying to do all those things on top of my usual tasks/chores. It takes its toll. I get bitter that no one notices me and that I need some "care package" or encouragement. I feel like a real selfish person if I draw attention to myself after all "I'm not the one with cancer."

And I continue to struggle with the fact that my husband procrastinated for over a decade to have the screening colonoscopy done (his mother and I kept reminding him, but he would never go). Finally he went, but the cancer was already there and developed. I keep feeling like we didn't need to go through this loss of time, money, productivity, health, if only he had just gone for the screening at the right time. I know this doesn't change anything, and of course I care about him getting better and hoping that he is able to survive, and that is my biggest priority. But, the day to day grind just highlights the practical realities of losing all that we saved up for, putting aside my work and goals for my doctorate,etc.

I really don't mind being his ostomy nurse, taking care of the details, holding everything together, I just wish someone would "notice" that this whole cancer thing is affecting me too and that I'm paying a cost too.

Thanks for letting me rant,
LSW

AnnaLeigh's picture
AnnaLeigh
Posts: 177
Joined: Jan 2010

LSW,

I am terribly sorry you have been thrown into the role as a caregiver and I am glad you have found this discussion board. There are so many caring and understanding people on this site who will support you through this process.

I have had all of the emotions and frustrations you are expressing, and after twelve months, I still find it rather amazing that people will turn a blind eye to the needs of the person providing care for the cancer patient. The needs of the caregiver are just as important and just as numerous as the person who has cancer. Caregivers not only take physical care of their loved ones, they also act as patient advocate, take on the additional duties previously done by their husband/wife, make all of the important decisions once shared as a couple, and last but not least, provide emotional support to the cancer patient while dealing with their own emotional upheavals.

You need attention, care, support, and time away from all of this burden without feeling selfish or guilty. If you have any one who can provide help (friends or family), make a list of things they can do and divide it among them. If not, then make a list of the responsibilities that you can hire other people to do. There are many service organizations out there with people who can do errands, clean house, cook meals, do laundry or even light nursing care. There is no such thing as too much help or assistance.

Sorrow, grief, anger, frustration and being overwhelmed are normal and typical responses to having your life and future jerked out from under you after a diagnosis of cancer. Being a caregiver is extraordinarily hard and is also an enormous honor.

Post again and let us know how you are doing. We all wish you the best.

AnnaLeigh

pattymel
Posts: 18
Joined: Apr 2010

LSW: I am in the same boat. My husband has stage IV kidney cancer with mets to the lungs and abdomen and a probable lung primary. I also have been overwhelmed with all the bureacracy involved, the endless phone calls, the seemingly endless paperwork. We also have an 11-year-old daughter and a 2-year-old son whose primary care I am responsible for by myself now most of the time. I also try to work to supplement his SSDI.

I also am bitter because my husband smoked for years, quit several times and always went back. Sometimes I just want to choke him for that, for the time he cheated us out of for a stupid cigarette, and then I realize that that is really nonproductive and I just have to love him.

I also sometimes feel like I don't have a spouse anymore but another child. When the treatments are rough he is in bed pretty much 24/7. He has grown old right before my eyes in just a matter of months and that saddens me beyond measure.

I had always dreamed of us growing old together and anymore we just wait for time in between scans and rounds of treatment. I guess we haven't figured out yet how to do "real life" with this beast called cancer right in the middle of it. I have at times been ashamed for the way I feel, and I can't tell you what it means to be on this web site and see that in that I seem to be "normal" after all. So thanks for sharing your story to lift me up and maybe I can do the same for someone too. Patty.

LSW
Posts: 2
Joined: Jan 2010

Wow. Thanks so much. I think this is so helpful. To know others are struggling and to encourage one another that we are not alone.

Being able to process, rant, and "complain" here, without fear of judgment or hurting someone's feelings will help me be in a better frame of mind for my husband's care. It doesn't change the difficulties of the journey, it just means that there are others that I can learn from and can lean on. So, thanks. I'll be staying in touch.

LSW

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

After reading the experiences of LSW and PattyMel as well as that of Anna Leigh, what is missing is, Who takes care of the caregiver?

Anna mentioned a few important solutions such as having someone one who can provide help )(friends or family), and then making a list of things they can do by dividing it among them. Or making a list of the responsibilities that you can hire other people to do.

Sometimes though, those friends or family are not available either due to where they live or they choose to focus on themselves and their family/career exclusively for reasons we may not entirely know. Some reasons are understandable while others are just excuses and we find out who our friends are and those we cannot rely upon.

We can turn to hiring others to do some of the work that would free up valuable time and reduce stress but that depends on if the financial resources are there to begin with.

If we go it alone as caregivers because we have no one else who will step up and have limited savings, what can we do to endure and succeed at finishing what we start?

I have found along with others different ways to heal, cope, and reach down deep within ourselves to use each day as a cobblestone to the next. My favorite music and tunes have been an inspirational source for me for 45 yrs. I found that spending time with animals is very nurturing as they don’t discriminate based on what disease we have or the person we are caring for. Finding quiet and meaningful places to meditate, reflect, and comfort ourselves has helped me as well. Our favorite exercise like biking, running or a sport we gravitate too can make a difference in how we feel. In harsh and difficult times, I have found time to write poetry, diaries, and analogies expressing what my feelings. One of my favorite times is to create a slideshow with lyrics and melodies in one presentation that captures my experiences. Joining an online cancer support group like CSN has made a big difference for so many as it’s a place where others understand and care. Some have chosen God and spiritual experiences to elevate them to the next day. When we cry, it’s our hearts way of showing sadness and compassion and from those precious expressions, our heart is lifted upon the strong shoulders of our spirit, gradually gathering the will to rebound.

Heart of Soul (Steve)

2 time cancer survivor
Caregiver for cancer patients/families 2009 to present
Mentor/Supporter to diabetic patients 2001 to 2007
3 time organ transplant recipient
1 time Donor of partial liver to patient on transplant waiting list
Major open heart surgery
Type 1 (autoimmune insulin dependent)diabetic 1977 to 2004

mslayd02
Posts: 9
Joined: Feb 2012

I was so glad to see your post. My husband was diagnoised with stage 4 gastric cancer that spread to his liver back in Febuary. At that time we were 2 years newly married trying to have a baby, loved to travel I waa in school, things were good. Now my life consist of cleaning cooking dr appt hospital visit and dealing with depression.

When I saw your post I waa so glade I wasnt the only person feeling this way. I feel guilty that I am feeling so needy but emtionally I am drained, I feel alone, I am tired and miss the cinnection my husband and I had.  Facing the fact at 38 the chances I will have children all slim to none and its difficult. I keep that to my self because here my husband is fighting for hus life and I am worrying about me. 

So I understand where you are coming from and you shouldnt feel bad.

 

AMF67
Posts: 4
Joined: Dec 2012

I'm so glad you posted this!  

So many of the posts in this thread echoed what I was feeling/thinking/saying.

I'm just so tired...mentally/physically/emotionally....

I decided to call my PCP today and got a prescription for low dose antidepressant-I hope that helps. 

How do you all do it?  

How do you hold it together with a depressed/hormonal/in-pain spouse? What do you do to keep your sanity? I'm at a loss.

Noellesmom
Posts: 1312
Joined: Aug 2010

Wow.  Depressed/hormonal/in-pain spouse.  That is quiet a description there.

Take out the hormonal part and I think you are describing many cancer patients - many people, actually, in general!

It is difficult to be a caregiver.  Many cancer patients say the caregivers have the more difficult job when cancer is being faced.

It is quite an easy thing to do to say you must take care of yourself.  I believe that means different things for each person.  Maybe it means you take a walk, sit quietly and read a novel - or both!  Your mind is being pulled in many directions and no matter how you try, focus can be a real problem. 

Definitely be gentle with yourself because you may be the only one who is.  Eat well.  Do gentle exercises or go to the gym and pound those weights - find what works for you.

Most importantly, realize you are human and you have limits.  Some things you cannot fix, they are out of your hands and all you can do is pray and give thanks for what is good.

Talk to someone who will really listen.  Come here and post.  Vent, vent, vent.  You are in pain, too.

Get help from a professional if you need it.  There will probably never be another time in your life you will need counseling more than when helping a loved one through a life-threatening disease. 

Let us hear from you.  Often.

stubbysmom
Posts: 9
Joined: Dec 2012

OMG, I thought I was a bad person for also feeling on the selfish side at times!  It sounds like many of you are also younger people.  My hubby has rhabdomyosarcoma which was originally in his sinuses and he took radiation and chemo which ended last may.  He has nerve damage and the chemo almost killed him.  He had a scan in August and again in November which were clear and also nasal surgery to fix complications from the tumor.  He got a severe infection back in October from the surgery which also almost killed him.  Recently he has been feeling terrible and I thought it was from the bad flu we have all had but he has also had memory loss and can't always form proper words so on Monday we took him to the ER at the U where he goes for treatment and they found 3 more tumors all in his brain.  So now he has to have brain surgery to have them all removed and biopsied.  We have been doing this just about constant for a year and a half.  We have 4 children ages 5, 7, 12 and 15 who I have to be the rock for, I run our buisness alone now, am Chris's caregiver and I take care of the house and all the things he used to do as well.  I also feel overwhelmed at times and now almost constantly.  My kids are taking this pretty hard especially after the recent news.  I try to make sure they are still involved in usual kid activities as much as possible too.  My oldest daughter has been such a huge help.  I pray each and every day he will be with us to see the kids graduate, all their milestones as they get older, grandkids and do all of the things we had talked about as the kids leave the nest.  I feel selfish in fearing I won't get to share all these things with the love of my life.  I also feel so selfish that I do take time to keep up with my hobies.  I don't like others to do the things that I feel I should be doing for my family either but I have a good group of people to help out if I need it. 

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