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A Caregiver's Life

slg
Posts: 200
Joined: Jan 2010

I am posting this in this section because my husband suffers from Liver Cancer and I know that there are plenty of caregivers who read this particular section because they too have a loved one who suffers from Cancer!

I have participated and read this page since my husband was diagnosed in 2009. Most of the time it has been helpful to get other opinions, learn more about certain procedures first hand. I hope my posts have been helpful to other people too.

A Caregiver's life is a lonely place. No one really knows except for other caregivers. I am so very frustrated right now that I had to share my feelings with someone.

I am sick of people asking how my husband is, or how are you holding up, or hang in there, or Love and Prayers, and offering "if there's anything I can do just let me know"... I am tired of having to monitor the health care proviers because they don't really care about my husband the way I do.

Everytime I have tried to reach out to someone just to talk they are always too busy... I am tired of hearing how everyone is going on vacation or living their lives while ours has been in Limbo for almost two years. We can't plan anything because we never know if he will feel up to it or if we'll be back in the ER!!

This, by far, has been the hardest thing I have ever done in my life. To watch the man that I have loved and shared my life with since I was 17 years old is so very hard. I am so afraid he will not get to transplant and I will have to watch him deteriorate even more.

Anyone else feel like me?

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

Did and still do.

cathy4889
Posts: 10
Joined: Aug 2011

My sentiments exactly, and I am less than one month into this nightmare.

We don't have too many people offering their support or help, for various reasons. So I feel very alone. My husband / best friend has always been my sounding board but I don't want to bother him with my pain and frustations that it seems no one cares because he has too many other things on his mind (he starts his treatments today), so I am keeping things bottled up.

Every once in awhile I explode, like I did yesterday, at work (because no one is talking to me) and I am met with little to no support from my boss.

My only saving grace has been praying to God everyday, all day.

Reading other posts like yours tells me that I am not alone and I just need to keep reaching out and reading these posts.

sue5749
Posts: 170
Joined: Dec 2010

Hi, My husband has supurgottic cancer now for 10 months had 35 rad treatments and cemo treatments been in and out of hospital several times. A lot of setbacks. I feel so alone also. My life has changed, I have changed, my husband has changed, he hardly talks anymore. I'm lying in the bed right now, his daughter is visiting him. Don't know when or if things will get better. I have become a nurse, transporter and a bookkeeper. Before all this came to pass I did none of this. I have just learned how to give a IV infusion. I can't complain, I feel terrible if I do. I keep a lot inside. My sister called yesterday and I said I could not talk right now. I don't like the person that I have become! Sue

womack1424
Posts: 38
Joined: May 2011

I completely understand your frustration,I have been a caregiver for 7 years now. My partner has stage 4 colon cancer. Although I have a great support system the questions of how she is doing sometimes drives me crazy, I just want to say she is dying!!!!!! I find that i have little patience with those that wine and complain about little ailments, i just want to tell them to suck it up. To watch the person you love slowly fade away is the most difficult thing anyone can go through, but we still have to take care of ourselves and live the life we were given to live as hard as it might be. I hope you find your peace.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I am the patient (brain cancer) and my beloved husband is my caregiver. I do understand what you are going through.

I try very hard to make sure that my husband takes time for himself and pursues his passion. We are best friends but I understand he needs his own space and I encourage him to golf, go to baseball games when people give him tickets, to still take his business trips, etc. That is very important to me. He, on the other hand, always wants to make sure that I am okay. So we have a compromise: when he travels on business, we gather up all the people who have offered their services. He notifies are neighbors and friends that he is leaving and they call or stop by to see how I am doing and if I need anything.

We both are in therapy, singly and together. We see a lady who specializes in chronic and long-term illness and marriage counseling, so she knows her stuff. We've been seeing her for 9 years since we have lived here and it is great to know that we have a sounding board to make sure we aren't losing what's left of our minds.

I also try to keep a "normal" schedule, or as normal as I can for me. While I don't work, my husband helps me with all the errands and cooking. We also run a business that requires face time so he wears many hats.

I love my husband very much and I don't for one minute take for granted anything he does for me. He has made many sacrifices over the years (17 since diagnosis) and he knows he always has an "out" if he needs it. His "out" is that if he decides he just can't do this anymore, he has the right, no questions asked, to walk away from the marriage. I love him enough to let him go if that is what he truly wants. But he always says no, that he is in it for the long haul and what part of our marriage vows don't I think he understands.

God Bless you for being a caregiver. Many times it seems like a thankless job, but I can assure you, even during our mood swings (including anger) we never take you for granted and we can never thank you enough for what you do for us.

Blessings,
Teresa

ketziah35
Posts: 1150
Joined: Jun 2010

Completely understand.

slg
Posts: 200
Joined: Jan 2010

Thank you fellow caregiver's for your replies. I have just had a day from "you know where". Paul is back in the hospital!! And I had to walk out of there tonight at 11pm after spending 3 hours in the ER waiting room, then 3 more hours an ER exam room (waiting for the room upstairs) and then 2 more hours for the hospitalist to come examine him before prescribing antiobiotics, after, for the third time, I had a nurse tell me that the hospalist had 6 other people to see before my husband and they were all sicker than he!!! Since when is Cancer not sick!!! That was the third person to have said that to me today and I lost it!!! I had to leave there before I started saying things that I shouldn't. It is now 12:15am Saturday and I have yet to get a call from the Hospitalist so I am assuming Paul will not get any medication today until the AM shift comes on...
I want to cry but I can't. I do try to stay tough and strong but I am losing that battle quickly... I have no one to talk to at this hour of night and I know that one of you probably can relate...
An to add to my frustration, the Radiologist from Kansas was supposed to have called today to let us know the results of the CT scan he ordered on Wednesday that I sent a CD of to him at my expense!!!
Saturday:
I couldn't sleep at first so got up and called to check on my husband, At 2 am Dr. still hadn't come to see him. Finally got to sleep but woke up at 6 so got up again and called to check on him. Dr. prescribed an antibiotic but didn't put the orders in until 4:30 then didn't order all his usual meds until 5:30 and didn't even include all of he meds!! I had to call the oncall Dr. and he said he would be seeing my husband this morning.
I am always scared to leave him at the hospital overnight. No one cares about him the way I do and because he gets confused at times I always want to be there especially when the Doctor comes to see him.
When is this nightmare going to end!!!

sue5749
Posts: 170
Joined: Dec 2010

Hi, I feel like this is me that you are talking about! My husband had been admitted to the ER 2 times in the last 2 weeks been through everything that you are going through! He is home now, I have learned how to give IV antibiotics for him 2 times daily. I told the nurse that I would not draw blood, that is where I draw the line!! I have learned to check his sugar and give him shots of insulin. I am getting on the job training as being a home nurse, lol. His sodium levels feel while he was in the hospitol, I didn't even know such a thing happens! I guess all we can do is, do what we can. I had it yesterday, told my husband I just had to go get my hair done! I put it off for so long. I was feeling terrible! So I just got in my Jeep, got my roots touched up went to the Mall and had lunch at Oga'. He called me while I was eating and said "when are you coming home? I said who is with you? He said his son. So I walked around the my Mall for awhile/ I just needed the few hours by myself. To do the things that I use to do. And let me tell you I felt really good! Us caregivers have to take some time for ourselves. I was not liking the person that I was becoming. So I know that I have to do it for myself as much for my husband. It has been a very hard and long 11 months. Sue

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

I sit and read these posts and find myself shaking my head in agreement. But I am in a little different spot than most of you. Yes I'm the primary caregiver, who am I kidding I'm the sole caregiver. Although It's not my husband it's my father, while his wife my mother she is present but so not in the picture. She's dealing with this her own way. She works through this and then is pulling away while at home. I know it's not that she doesn't care she just can't deal with it.

So it's me that Does all the caregiving duties. My dad was diagnosed with stage IV stomach cancer in feb 2010. Let me tell you this has been the longest and hardest 18 months of my life.Even though my brother lives less than 30miles away he hasn't been in the picture until as of late, and very minimally now. He calls about 3 times a week and speaks to me to get updates. Comes over for 15 mins once every two weeks.

I myself took a break today to go see my sister in law in the hospital today *his wife* while I was there my brother started asking about certain "belongings" so I Had my suspicions proven right he's looking at material items. He states "when dad dies ....."

This is just something I can't even deal with right now. As if I wasn't feeling alone enough in all this Now I feel even more alone.

It is so important for us to know we have others that truly understand where we are at. And take a moment to do something for you. Today the something for me ironically was to go up and cry in my room.

Hold strong and know you aren't alone in all this. We do feel the same.

Many hugs
~Valerie

slg
Posts: 200
Joined: Jan 2010

I am so glad that I finally posted on this site. Although we all have loved ones who suffer from different types of cancer we all seem to share the same sentiment and feelings.

Faithful, I shook my head right back at you. We have two daughters. One who is right there with me everytime and the other who wants to be informed but keeps her distance and does not call on a regular basis but actually expects us to do the calling... and she is in the medical field!!!

She does not ask how I am doing nor does she really want to interact with me at all. We really don't know what is her problem but I do not have the energy to deal with her right now when I have more important things to be concerned with.

Sue5749, I only have my hair appointments as my time!!! I am so afraid to leave my husband alone and I wish that I had someone to sit with him and keep him company while I have MY time. I am afraid to leave him because that might take away from OUR time just in case he doesn't make it to transplant.

We can all have as much support as needed but no one really understands unless they have been a caregiver themselves...
Thank you all!!!

sue5749
Posts: 170
Joined: Dec 2010

My husband has had a liver transplant back in 1998 was pretty sick until a liver was found. And now dealing with the CANCER. This man has been through a lot! Now he is back in the hospital for a bacteria infection they can't seem to find where it is coming from, so they have him on several different antibiotics. So if I can get somebody from the family to come by and sit with him, just for a little while it helps.

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

Hello to all of you,
I'm so sorry that you have no support system. I am so blessed in that regard but I understand what you're going through as a caregiver. My husband was diagnosed with Stage IV Esophageal Cancer on July 11, 2011 and suffered a severe stroke 9 days later. I am frequently on the discussion board for Esophageal Cancer and this is my first time posting on this caregivers site. One of the other stage 4 guys who's opted for no chemo or radiation was just on board today expounding on how wonderful hospice is. Hospice is NOT only for the dying...it's for the living and for the caregiver. They manage and provide the pain meds so desperately needed, they give you time away to do what you need to do and to breathe and they provide compassionate care to your loved ones. I encourage all of you who are so alone in this to get the help of hospice NOW. You can thank me later.
Rita

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hello FaithfulAngel
I was in the same boat as you almost 2 yrs ago March. My mom was the main caregiver to my dad, I was second. My brother....lives 8 hours away in NJ. My dad had been begging him to come see him for months. Do you know when my brother finally showed up? The day of the night my dad passed away. He saw my dad at his worst. My dad was so doped up on morphine he did not know who we were! Now...had he come months earlier like dad wanted him to....he would have seen a much different dad. It is soo sad. He also pulled some more crap when our mom had to have open heart surgery this past December. He did not come to be with me. I can not come....too much snow...what if it snows more? Oh please....what if our mom dies??? huh??? have you even thought of that??? I am so mad. I will never forgive him for doing this to our parents. Thank God for your dad that he does have his Faithful Angel. Keep in touch. We are thinking and praying for all of you.
Tina in Va

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

My husband always gets permission from the doctor to spend the night(s) at the hospital with me. He demands it. He tells them that he is their eyes, ears, feet and hands when they are occupied with someone else. If I need to get up and go to the bathroom (with an iv pole) in the middle of the night, he takes me, we don't bother the nurses. He questions why, at 2:00 a.m. when I am sound asleep, they feel the need to come in and wake me to give me a sleeping pill. If I am napping during the day and the all the docs (teaching hospital) are making their rounds, he tells them to put me on the end of their rounds so I can get an extra hour of sleep, etc. He runs for ice, water, jello, juice, food, etc. He double-checks the medications, tests, etc. to make sure they are what the doctor ordered.

My husband says that no one takes better care of me than he does and he makes it his mission to stay with me in the hospital room (unless I'm in ICU) the entire length of my stay.

If you are allowed, and want to do it, you might consider asking for permission to stay overnight.

Teresa

here4lfe
Posts: 295
Joined: Jan 2010

Teresa,

Your husband sounds like my Father-In-Law, who would sleep on the floor in if he could to be with his wife. I, on the other hand, appreciate it when I can hand my wife's care to someone else. I am it, and to have a few hours rest to myself is the best way for me to re-energize for the caregiving when she gets out.

Best

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

I think as she get sicker.... after a point it is me who suffers the most. To explain why she cannot be at a party, or why I still have hope or that things r getting better, etc.

At the same time, I have learned that people don't know what to say... they r awestruck. They want to be helpful.

You have my sympathy, support and understanding.

As a postthought.... your post grabbed me. I have never posted here before..... thanks.

slg
Posts: 200
Joined: Jan 2010

Today marks one week my husband has been in the hospital and it doesn't look like he's coming home this weekend. I need to vent and I think this is the only site that has people just like me who truly understand. I am sick of the "love and prayers posting on our C/B site" I just wish one person would take the initiative to do something nice for me without me having to ask. a few friends actually call or text or email everyday for updates and they do let me vent. I do have one friend who we met at our support group who has come to the hospital every day for the past three days. I know she means well, but she always seems to come during a mealtime hour and whenever I start to talk about something my husband is suffering from I hear a story from her what she went through ( she has a transplant in December). Now everytime something goes wrong or I have to help my husband with something he is apologizing to me. I have cried so much this week, more than I have in the past two years!! This is soo bad. I am soo scared of him not making it through this.. BTW, I have never been offered a casserole even though we have been trying to get weight back on my husband.

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

I am sitting here and I feel that I understand exactly what you are going through. It's so hard when you need someone to just hear you. I want to just grab ahold of that person sitting across from you and shake them and say "shut up and listen, this isn't about you." Sometimes we just need to be heard and validated .

That person as I call them the "DoGooder" sometimes they just need to hear you, to understand what you need without being led by the hand and saying "I NEED THIS" sometimes just being a compassionate friend can pull the layers off one by one and understand what you need at that moment.

Since my dad's diagnosis I have just wished instead of hearing if you need anything or if we can do anything just let us know. Why wouldn't someone come over with sandwiches and sit and talk or come over and offer to go to the grocery store or even come sit with my dad so I can take a shower without worrying that he'll need me in mid shower.

So I can completely understand where you are coming from.

Yesterday was our 2 week marking since the diagnosis of brain involvement. It's a tough run and peoples compassion would make a world of difference.

Sending much love,

Valerie

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

I'm in a different role but am the caregiver for my dad. No other family is in town but my in laws and friends have helped out. I set up an email list of my dad's friends and our family and when things were first getting crazy, I just asked for things in the emails. Such as, can someone take dad to such and such place, or sit with him, etc. I asked for a roof repair, someone to help walk all the dogs while at the hospital, and even about food. Not all at once, but maybe by making a list of things you could use and putting it out there, you will get a better response from those don't realize your needs.

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

Many people just do not know what we need/want. I was very surprised that one day my wife asked for help with school supplies and back to shool shopping for our kids. We had a budget and a list, and before you know it several mothers (sorry that it sounds sexist, but it was all mothers) called/emailed and was done. We have asked for help getting our kids to and from events, and people with kids at the same events have stepped up and made a schedule of who would get our kids.

It has been VERY DIFFICULT for me to ask for help, even though I clearly have needed it. But when I do ask for specific things, almost always someone helps. We've even had people offer to bring meals when/if needed. My wife gave those names and numbers to her mother. And when we need things, she calls around and people offer to bring a meal every other week or somthing.

Other people have helped watch the kids during chemo days, mow my yard, and so much more.

I'm not sure how we have been so fortunate, but we have had people that we've never met send us giftcards to local restaurants or grocery stores etc. One time, I even received an envelope in the mail with five $100 bills and a note that said, "Please use this for your family in anyway you see fit." To this day, I have NO CLUE where it came from.

I have learned so many lessons from this experience... and while I and my wife have done much volunteer work and given donations in the past, I hope I am able to "pay it forward" in time.

I do know our experience has been atypical and much more positive than most...but to dearfoam's point, asking for what one needs is the surest way to get it.

jimwins's picture
jimwins
Posts: 2026
Joined: Aug 2011

Thank you NayPaul for sharing.

It just reminds me there are truly good and unselfish people in the world.
Of course I'm seeing that here on this site too.

Warm and positive thoughts to you, your wife and family.

Keep sharing!

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hello slg and welcome to you and your husband. I was a caregiver for my dad. He passed in March 2010 from esophageal cancer with mets to the liver. I have felt like you. It is normal to have these thoughts and feelings. Thank God that your husband can have a liver transplant. My mom and dad had just celebrated their 51st wedding anniversary in January 2010. Liver cancer is one of the worst. It is so hard to watch your loved one be in such constant pain. It is so hard to watch your loved one suffer with side effects from the chemo and pain meds. It is so hard to watch your loved ones quality of life disappear. You both have a bright side to look to...his transplant! Live for that each and every day. Thank God for that. Keep us posted, we will keep you both in our prayers.
Tina in Va

tko683
Posts: 257
Joined: Aug 2011

I totally understand how you are feeling. I feel the same way. It is so hard navigating the world of cancer. I am a 7 year survivor of breast cancer and my husband was just diagnosed this year with stage 4 rectal cancer. I am so overwhelmed with everything that Ijust want to scream. I can't fall apart when he is near or he gets upset. He was such a rock for me when I went through my treatments for over 4 years. I truly don't know how he did it because I am failing miserably. I too am so tired of hearing people complain about little things and talking about the fun vacations while we are now battling cancer for the second time. I am totally depressed but somehow have to be strong. My husband is not good when he is sick and gets mad when I ask him what is wrong so I feel like I am completely alone. I don't know what to do. It is really hard being a caregiver after being a patient because I have so many lingering side effects and don't feel very strong myself. The whole picture is just really too much for me. I just want something good to happen for our family. Our kids most definately don;t deserve this....life is definately not good right now.....it does help to read this board though to know that we are all not alone....so thank you all....sending prayers of strength to you...

slg
Posts: 200
Joined: Jan 2010

Well, Kansas did not come through for us last week. They did NOT present his case and will do so this Wednesday! We were very very disappointed that they had a lack of communication and didn't do this. They asked for yet another MRI and that it be overnighted to them which we did.
The good news is Paul came home Saturday! He is resting comfortably and glad to me home in his own bed. I really don't know what we will do if we do not get good news this week..
This last hospital stay took it's toll on both of us. The care was very good with some exceptions but one thing I did learn is that you definately need someone there the majority of the time to advocate for you, run to get things that you don't want to bother nurses for and monitor labs and drugs just in case something slips through the cracks. Learn where everything is on the floor, ie. lines, water, ice, juice, snacks etc. so that you can access these things when needed!!!
Hoping that we get good news later this week!!

buckeye2
Posts: 427
Joined: Jul 2011

I pray for good news for you this week. You deserve it. Lisa

here4lfe
Posts: 295
Joined: Jan 2010

When my wife and I go to the hospital it feels like Cheers, where everybody knows your name -) I know the shortcuts for where to park for best convenience, how to get to the cafeteria, the private numbers to the doctors and nurses, the concession lady knows what bubble gum I like, a regular. It would be fun if this were not about life and death.

Best

buckeye2
Posts: 427
Joined: Jul 2011

At least you are keeping some sense of humor in this mess. I bet your wife appreciates the break in the drama. Lisa

rocket baby's picture
rocket baby
Posts: 22
Joined: Sep 2010

Sure know how you are feeling...my husband was dx in 2007 and now it looks like we might be in for another battle. He has been in remission but is symptomatic again. The hardest part for me is when someone says that they are under so much stress and they have a healthy husband, two incomes maybe a child and I think OMG, what? I try to just listen and not comment but what I really want to say is you don't even know what stress is. I too get tired of people asking how my husband like I don't exsist or something. What they don't know is that this disease is all encompassing and when one person in the house has it, everybody shares the load.

Thanks for letting me vent. michele <3

slg
Posts: 200
Joined: Jan 2010

Michelle,
I agree 100% with your comment about people who complain about such trivial things. They are so clueless to what stress we caregivers are under. I just wish they would once stop and think about what they are saying before they do say it.
On my husband's most recent hospitalization I had a total of FIVE different people say to me "they are taking care of sicker patients or they do have other patients to take care of!!!" Since when is Cancer not sick enough? I only have one husband and only plan on having one husband! Very inconsiderate people!!!

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

I agree about others not understanding what a caregivers life is like. Below is a recent account of it on the phone with my best friend...sorry fellow caregivers, I have to vent on this one....

I know other people have issues in their lives. My husband is dying of cancer..."No, I can't make him eat as you say. No, He doesn't want to try this herbal pill you requested he do so.... No, he doesn't want to go out of the house. No, he doesn't want to take chemo... No, I am not making his decisions while he is still able to." And when I state these things to her she says, "I am only asking" No, you are not asking, you are telling. I know he is a diabetic and I know (as does he) that he needs to keep an eye on his blood sugar. We are doing that. No, I can't adjust my plans for your sake. I would like to bring my daughter out for her birthday and not have it at home to overwhelm my husband with the noise. But, of course to appease her, I asked my daughter if she was really bent on going out to dinner cause her Aunt (my best friend) can't afford to go out to dinner. Makes me just want to scream at the top of my lungs!!!! This stupid cancer is not only robbing me of my husband who I love dearly, it is also robbing me of my sanity!!!!

Thanks for letting me vent!!
~Kelly

sue5749
Posts: 170
Joined: Dec 2010

I can so relate to what you are saying!!! I am at the same place as you. My husband is a diabetic also. Has cancer of the throat, has had a liver transplant, I could go on and on. Everything you have said, or other people have said to you I have heard also! I so HATE THIS CANCER! Go ahead and vent, vent, vent! I believe we all have felt the same way as WE do. At least most of us! Sue

jeff36
Posts: 4
Joined: Sep 2011

you are right. no one really knows what we are going through. my friends go out and on vacations and we cant plan anything as well. but i am just fine being there for my wife. but she tells me to go to my friends all the time but i cant because you never know if they are gona get sick or if they need you...so yes i know how you feel

sapphiresoul
Posts: 1
Joined: Sep 2011

My husband survived advanced neck cancer 21/2 years ago and it has been exactly as described here. Never ending caregiving. I was finally properly diagnosed with celiac disease after being ill for years a few weeks before. Fun! I feel like a walking corpse & I have alienated everyone it seems. I"m just trying to live on cruise control. I actually used to be a fun creature:)

pcrisp123
Posts: 2
Joined: Feb 2012

My husband has had Parkinson Disease since 2000. We live in South AK and I have taken him to Tyler TX over 100 times since then. I have driven every trip which is around 380 miles. Have worked at four different jobs and have had to quite each one to take care of him. Lot of people call during the first week that he is so bad, but after that you do not hear or see anyone. The last four months have been the hardest, since he went to TX for surgery and we stayed there for three weeks, and then made three more trips after that. Have been to the ER two times in Jan and back to TX to see two more doctors. He is able to get up and get dressed, but does nothing else, I make sure that he has his meds and meals on time. Sometimes I feel like he uses me, we go nowhere. There is no sex, I can cry and he does not even pay me any attention. I sometimes feel like I am in this life to be his maid. He is very spoiled and has always been. I live for my four year old grandson. He makes me so happy. I taught school for 16 years, have raised three fine sons. If it was not for them and the Love of God I would have been out a long time ago. I had thyroid cancer back in 1993 and have recovered well. Hope you can find some joy in knowing that you are not alone in this journey. May God Bless You.

pcrisp123
Posts: 2
Joined: Feb 2012

My husband has had Parkinson Disease since 2000. We live in South AK and I have taken him to Tyler TX over 100 times since then. I have driven every trip which is around 380 miles. Have worked at four different jobs and have had to quite each one to take care of him. Lot of people call during the first week that he is so bad, but after that you do not hear or see anyone. The last four months have been the hardest, since he went to TX for surgery and we stayed there for three weeks, and then made three more trips after that. Have been to the ER two times in Jan and back to TX to see two more doctors. He is able to get up and get dressed, but does nothing else, I make sure that he has his meds and meals on time. Sometimes I feel like he uses me, we go nowhere. There is no sex, I can cry and he does not even pay me any attention. I sometimes feel like I am in this life to be his maid. He is very spoiled and has always been. I live for my four year old grandson. He makes me so happy. I taught school for 16 years, have raised three fine sons. If it was not for them and the Love of God I would have been out a long time ago. I had thyroid cancer back in 1993 and have recovered well. Hope you can find some joy in knowing that you are not alone in this journey. May God Bless You.

lopez1
Posts: 3
Joined: Aug 2012

Hello slg. I have not been a cargiver for as long as u have but I am in a similar situation my boyfriend who is 28 was diagnosed with stage 3 rectal cancer he just had his first surgery and we just found out it spread to his lymph nodes and 6 of them have tumors now we r in the hospital he has a bowl obstruction. To top it all off we have a baby coming in December it has been very hard for us and I feel like nobody understands the strain that puts on me to deal with everything. I try not to let him know about any financial hardships we are going through or any of the pain I'm in with the pregnancy . And like u we cannot plan anything because of the fear we also have two other young children at home and I'm struggling. Mentally to keep ot all together.

grandmafay's picture
grandmafay
Posts: 1613
Joined: Aug 2009

You might want to check the date of this thread. Caregiving has not changed and it is really tough, but many of these posts were written some time ago and the circumstances of some of these caregivers have changed. You might find that you will get more responses on a newer thread. I am really sorry that you are here and are going through so many hard times. I am much older than you and my children are both older with children of their own. Still, during the 6 years I was my husband's caregiver, I had many of the same feelings and concerns. You are dealing with so much right now, not only caring for your boyfriend, but also fulfilling your many duties as a young mother. My heart goes out to you and your family. Please come here often, whenever you need support or just to vent. We are here for you 24/7. Welcome to the boards none of us wanted to be on, but I am glad you found us early. Take care of yourself, too. You can't care for your boyfriend unless you care for yourself first. Lots of hugs, Fay

slg
Posts: 200
Joined: Jan 2010

Hello Lopez1,
Thanks Grandmafay for interveening but I think I had better do this... I was a caregiver of my sweet husband of almost 40 years from October 2009 to January 14, 2012. He passed away on January 14th. I was by his side as were our two daughters and my son in law. There is not a day that I don't miss him and wish he had made it. But the reality is not everyone does. He missed his chance for transplant and gave up his fight when the doctors said no more...
He was courageous and I for ever will miss him. I am who I am because of HIM. I am the strong courageous woman that he chose to be his wife. I took care of him till he took his last breath.
I am struggling to keep going and I am sick of all the clicque sayings...
I just walked our youngest daughter down the aisle in his place. We honored him in many ways at the wedding and it was bittersweet.
I hope that you too will find the strenghth that I found to stand by my husband and say goodbye.
I'm sure your new baby will give him what he needs to fight. Best of luck.
SLG

QuisoNeo's picture
QuisoNeo
Posts: 18
Joined: Jan 2012

I have been caregiving for my fiancee for a year now. He was diagnosed with stage III laryngeal cancer last Fall. He had been feeling tired and having headaches and neck pain for a while before that, so it's really been longer. He underwent radiation and chmeo from November last year 2011 until the end of January. Has a g-tube and hasn't eaten real food since just before Christmas last year. He lost about 40 lbs. Started to get better a few months after radiation/chemo was done and started to gain strength, etc. We had high hopes he was cancer free, but it either returned or was not completely gone. He had to have a total laryngectomy on August 17. He is healing well and in good spirits. He's done amazingly well emotionally and strengthwise through this last surgery and current recuperation.
I feel like I am a cranky, tired caregiver and I have a lot of resentment that I am having a hard time letting go of. His adult kids said they'd be there for us and they were for about a minute this time. They were more supportive when he was in chemo and radiation than they've been after surgery. I told them very clearly what we needed and they assured me I am not alone in this, but then all they do is land on us (all at once, even though I specifically asked them not to all come at once) without notice (even though I asked them to please call and see if it is a good time) and then they just sit and visit. No one would think to ask if they could help do something, or call ahead so I could plan to get out and have a break. I get that they don't want to suction their Dad's airway or worry that he is choking on their watch, but hey; it wasn't my idea of fun either. No one would think of bringing me dinner or something else to eat, since I couldn't even go to the store in the beginning. I am angry and I am tired and I don't even like myself right now.
It has gotten to the point where he can do a lot of his own suctioning, preparing bags of formula and he is up and around a lot. But I am having to stop doing all that for him so that he becomes more independent again. I feel like I need a vacation. Thanks for letting me vent. I am going to set up a schedule of going to the YMCA and finding other things to do so that I'm not always available.

Boxtopper
Posts: 1
Joined: Sep 2012

Yes, I feel exactly the same. I don't like I feel anymore. I feel differently toward the people that were suppose to love me/us. Where did they go now that we need them?
My husband has been in and out of hospitals since January 2012 and just came home. It has been a roller coaster ride. I'm so glad he is home....but I feel like I have lost myself somewhere.

I hope someone that has been through this and that has somewhat came out the other side can offer some advice on how to cope.

Thank you.

slg
Posts: 200
Joined: Jan 2010

Boxtopper,
Yes, I have been through this but don't know that I have come out the other side yet. The ups and downs are hard to take. During my husband's battle we lost a whole family as long time friends. They apparently couldn't deal so they are gone. The sadest part was seeing my husband talk about it and ask what he did to make them desert us... I used to tell him he didn't do a single thing. They just weren't capable to cope and help us.
On his last days he talked about them. That was heartbreaking to see.
Don't give up and try to stay positive as hard as it might be. Best of luck and keep in touch.

sadinholland
Posts: 233
Joined: Apr 2011

It's tough being the caregiver. You are hurt,you cry, you feel guilty, you feel like a weight is on your shoulders. I love my husband and I will always do everything I can for him no matter how hard it gets. My family lives in another state and when my husband was doing his chemo and radiation they all contributed things and sent me a care box with a beautiful card. They said although my husband is the one sick, they know it's hard for me too and they wanted me to know they were thinking about me too. It's was so sweet, full of bath stuff,books,candy,teas,lounging gown,etc. It really touched me. Sometimes people don't realize that the caregiver is going through a rough time as well. Instead of people saying let me know what I can do, it would be nice if they would just do it. Caregivers often feel guilty asking others for help with their loved ones and I don't think people understand that.

sadinholland
Posts: 233
Joined: Apr 2011

I think we feel guilty if we take the time to do something for ourselves while the person we love is going through so much.

Couchie
Posts: 24
Joined: Nov 2010

I felt that way for a long time. Now we are nearing the end of years of treatment and those feelings have slowly diminished. It does get better... eventually.

crazy98
Posts: 25
Joined: Dec 2004

I am a 13 year childhood cancer survivor. I know cancer doesn't just affect the one going through chemo. It effects family and friends as well. I started a blog and wrote a post about caretakers. http://ialwayswantedtoshavemyhead.blogspot.com/

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