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Is There Hope for Caregivers?

afraidinindy's picture
afraidinindy
Posts: 80
Joined: Jul 2006

As a caregiver, I would like to hear from someone else that perhaps has gone through some of the battles I'm experiencing. Maybe I'm just having pity parties but even so, I would think others have done the same, surely I'm not alone in this fight within. 1) Has anyone ever wondered where your TRUE friends are? As faithful church goers and thinking many of the women were my friends, I suddenly am questioning - where are the calls, the visits, etc. Yes he receives cards and I've received a few, but I am at the point of feeling "alone". True, I go to work and I come home and care for him and sometimes we can communicate, others no. But I miss the fellowship of talking and seeing the ones I felt were close to me. 2) Do other caregivers feel completely overwhelmed? I are so weary at times after working all day, coming home and caring for him, trying to do what chores must be done that day, keeping up with paying the bills and all the other things he did before becoming ill. I feel totally inadequate at times and wonder why I can't seem to get things accomplished. I've given up all things for myself - scrapbooking, reading, just try to relax when possible. I do sit down with him and visit as much as possible in the evenings. I truly feel my life is a "merry-go-round" and I want to get off sometimes. Is all of this normal or am I expecting too much? I am 62 and realize we do slow down somehwat, but I feel I should be able to keep up with everything better than I am. Forgive me for this lengthy message, but I really need some answers. Anyone that has gone through this or is currently there, please respond.

stressed
Posts: 24
Joined: Jun 2006

Your friends will come through. My husband began treatment 7 months ago. My own sister called twice & she's local! However, I've had my grandparents, aunts, uncles, cousins, childhood friends, and newer friends calling daily. E-mailing friends helps. I have one I e-mail and put "bad day" in the subject area. I told her to just delete those - it's just me venting. It helps to write & to know you're not alone. We have 3 young children ( 1 with CF) so I didn't work. We had no health insurance & had just built a special home for our 1 year old - with CF. I don't know how we've done anything for 7 months that my husband hasn't worked. You're NOT alone! I don't know if things will improve or not, but my family is currently together & that's important. I am making my husband get a will, just for me. I don't know about hope, but friends are ALWAYS thinking of you!!

afraidinindy's picture
afraidinindy
Posts: 80
Joined: Jul 2006

Thanks for responding. See, I feel sorry for myself but there's always someone worse off than I. It would be terrible to be young with children to care for and to go through this. Do you have anyone to give you help and breaks occasionally? How old is your husband and what type of cancer does he have? My husband has colorectal with liver mets. Completed rads/chemo on June 21 and will have colon surgery around August 1. Sometime later he will have liver surgery. Life is certainly hard when you are hit with this, I just never realized as I was never around anyone suffering through it. Keep in touch and let me know how you're doing. I'm not familiar with CF so have no idea what you're going through with your child, but I know it has to be terrible. I'll keep you in my prayers.

stressed
Posts: 24
Joined: Jun 2006

I think that all caregivers are permitted to have pity parties. Thanks for just voicing what some of us don't - also - remember - you are not alone. That's the toughest for me. Often I feel like it's me against the world. I've also come to the conclusion that I'm a control freak. However, lately I control nothing. I can't make anyone better. I just do a lot of praying. My husband is 47. He had stage 4 tonsil cancer. He may never eat or work again. We have our own business, but he is the business. We had our children late. Do you have children near to relieve you? Sometimes just their smiles get me through the day. Many people don't want to intrude and they're afraid of the unknown. I just keep having friends over and doing a cook-out. My husband can't eat, but people at the house give me a break. I realize that life is going on outside my little world. Just smile. I also e-mail my friends and family with updates, and have requested no negative info from them. There are those certain messages that just make us cry & I don't need help doing that. Take care & SMILE!!! Laugh alot!!

CanadaSue's picture
CanadaSue
Posts: 339
Joined: Apr 2006

HI,
Iam a caregiver! Always remember caregivers are God's angels (I stole that from Kathi)
While my husband is able to carefor himself most times, there are times when they do need us. I have never been to a pity party, but I can relate,
My problem is I get angry for this disruption in our lives.
Friends who no longer call or come to visit are either afraid of the unknown, or were never true friends to start with. I just chalk it up to their lose, we still all have a lot to give.
One thing I have learned is going to work is good! It takes my mind off things for a while, and allows me to regroup. I also make plans with my girlfriends and we go out at least once a week. (I think this also helps to keep me sane) I keep our friends and family updated on what is happening via e-mails. I let them know the latest news and I throw in a few jokes, which I know makes people feel more at ease.

While everyones situation is different, maybe if you were to find sometime for yourself things would be much easier. Is there anyone who can come and spend sometime with your husband for a couple of hours? You don't even have to leave the house., you could just go to another room , read, sew, or whatever just to give yourself a little down time. While most of my family lives far away we have found a game site on the net and visit while playing games, that in itself is a great stress reliver for me.

Would love to hear back from you!

You and your husband are in my prayers!

Sue

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

First, you're never alone. This site is amazing and although I'm no longer a caregiver (my brother died of liver ca), I still feel that loneliness sometimes. Second, you must take better care of yourself and that includes taking time out of your caregiver 'duties' to maintain your own life and sanity. If that means taking an evening a week to do scrap booking or go to a movie, do it! I don't know what your husband's health is but many hospitals, county organizations, churches, offer respite care. You need to find those sources and utilize them. I'm amazed that you have been so strong - working full time and then coming home to work double time as a caregiver! Find those outlets - and also share your feelings with those who are truly your friends. I hope you're continuing to go to church - talk to your pastor/priest - I think a lot of people simply fear 'intruding'.

Take care of you or you wont be much use to your husband!

God bless!

stressed
Posts: 24
Joined: Jun 2006

How are you doing? It doesn't seem that you've been on in a while. I just wanted to check on you. I even spoke to my mother about you. I hope you found some support.

AuthorUnknown
Posts: 1563
Joined: May 2006

Hi,

Although you and I both post on the colon board, I wanted to reply to your post here. You seemed to say exactly what I am feeling this week. I emailed a friend tody and used the term merry go round to describe how I feel. My husband was dx'd 6/05 with colon cancer (liver mets). Although he can take of himself at this time, there have been times he needed daily help (even to shower). I,too, work a job but sometimes feel all alone even around friends. People on chemo mention chemo brain but I feel as though I am the one with chemo brain. Hubby can remember better than me.

In addition to working full time, I am director of the Children's department at church, coordinate the van ministry and manage all my father-in-law's care. He is in an assisted living facility. I manage his bills, medical treatment and take him to all appointments.

Yes, I feel overwhelmed. Especially this week. I try to work extra hours to make up for the time I am off for hubby and father-in-law appointments. There is usually at least one every week. I understand that hubby is the one with cancer and I feel guilty when I feel this way. It just seems that I have little time for a break. Even if I sit down, I am still worrying.

Well, this was long. Sorry. I just needed to vent. I also wanted you to know that you are not alone in your feeling.

Things for us are better than a year ago when he was dx'd. That was when he needed so much help. Although he is stage 4, he can work every day and keeps a positive attitude. I no longer have to care for him, but he likes the extra attention I show. The "what if" scares me. I think that is the worse part and everyone just tells me not to worry everything will be ok.

If you have read this far, thanks for listening.
Betty

Cindy54's picture
Cindy54
Posts: 454
Joined: Aug 2006

Hi Betty. I am pretty new here and have been reading the boards. You sound as if you have quite a struggle going on, trying to juggle everthing. I take care of my Mom who is 90 and has late stage ovarian cancer.Last year was when the dianosis was made and I took quite a beating financially. I have made sure she keeps up her insurance payments..$571.50 every other month. But with my not working and trying to take care of her , well I call it creative juggling. There are some months every one gets only five bucks as a payment. In addition to being on unpaid family leave and then going part-time, I got sick in December. I had a tumor removed from my spine. It took two months before I could walk. The tumor was benign. I am grateful that it was, but the bills keep piling up. I am currently on public assistance until I attempt to go back to work in late October. Throughout all of this I have struggled trying to keep myself going. I did not realize just how strong I was. As far as friends..Mom and I are the only family left...well, some that I called friends have chosen not to even call. And some that I was never really close to have been my biggest support. I guess if I did not believe in God I would really be lost. I know how hard things are. And I don't have children to take care of. I think about the families that struggle and the enormous stress they must be under. I wish you well Betty. I send a hug and my best thoughts your way. Cindy

AuthorUnknown
Posts: 1563
Joined: May 2006

Hi Cindy,

Nice to hear from you. It helps to "talk" to others here. I know you will be blessed for all you are doing. I took care of my Mom for two years. When she was gone, I had NO regrets. Sadness and "what if" at first. I know that I did all I could do for her and that gives a peace that can't be replaced. Sometimes friends and family disappoint you. With God all things are possible and He will not put more on us than we can bear. Do you have Hospice or any help at all. You can't do everything. It is hard to ask for help but they are there and are experts. I don't think it would cost you for their help. Hang in there! My prayers are with you and your Mom. Our family has faced ovarian cancer as well.

Please post again. let me know how things are going

Betty

minikid
Posts: 1
Joined: Dec 2006

Ahhhh! Just the post that I was looking for. I read earlier what Kathi said about "Caregivers being the angels..." Well, today my halo is tarnished and my wings are drooping and dirty. A week ago my 18 yr old son made the comment that he thought this would be our last Christmas with Grandma.

From the time that Mom was diagnosed I have known that I would be lucky to have a year with her... Needless to say, I have been a blubbering idiot for the last week. I have hid my feelings and tried to be strong for everyone else and I have yet to let myself cry or deal with the pain that I am feeling.

My "best friend" doesn't call anymore and when I call her she gets off of the phone as quickly as she can. Mom's friends are dwindling and don't call as much as they did in the beginning. I understand that everyone has their own lives and dealing with someone with cancer is not "the easiest thing in the world." I deal with it on a daily basis, I know it's not easy. All it takes is a phone call from a friend that is willing to listen for a few short minutes, either to her or to me.

My Dad, even though my parents are divorced, has been great. I can call him and cry on his shoulder any time of the day or night and he's more than willing to listen. I'm not sure how my step-mom is handling it, but so far she's not complaining.

How does the caregiver deal with the pain and loss?

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