A Caregiver's Life

YES!
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 said:

Update
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!!

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

palmyrafan said:

Hospital Stays
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

Can't Do It
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

slg said:

Faithful Angel and Sue5749
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!!!

Hospice
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

i understand
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

jeff36 said:

i understand
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

My husband survived
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:)

feel the same way
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 said:

i can relate
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.

Date
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

Tired of feeling tired and cranky
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.