Caregiver struggle

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Caregiver struggle

by marilyn123 on Thu Feb 14, 2013 03:35 AM

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I need some perspective because I am burned out and struggling. After more than a decade of helping and supporting the love of my life through advanced metastatic prostate cancer, I am at major burnout mode. At age 54 his initial diagnosis was a PSA of 4with a Gleason of 8 limited to prostate. After 8 years with conventional treatment regimens and the best specialists at numerous prestigious centers in the northeast, the cancer metastasized. He failed on both zytiga and taxotere and is now on Xtandi. To watch a once vibrant man lose his virility, succumb to a permanent catheter, now walk with a cane and suffer from excruciating bone mets pain is next to unbearable. I have been at his side at every doctor visit, scan and treatment. Right now, I am tired and done in. I know he has the cancer. But it has also majorly changed my life....from intimacy, to retirement plans, to growing old together. Yes, I have been there and will be. But the cancer should not negate, erase or minimize the needs and life of the caregiver.has anyone else experienced this? I feel guilty and even ashamed for writing this. But even with counseling, and no I am not depressed, I am just plain in burn out mode and do not know how to extinguish . Thanks.

Carolynbmaes Carolynbmaes
(Inactive)

RE: Caregiver struggle

by Carolynbmaes on Thu Feb 14, 2013 06:43 AM

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On Feb 14, 2013 3:35 AM marilyn123 wrote:

I need some perspective because I am burned out and struggling. After more than a decade of helping and supporting the love of my life through advanced metastatic prostate cancer, I am at major burnout mode. At age 54 his initial diagnosis was a PSA of 4with a Gleason of 8 limited to prostate. After 8 years with conventional treatment regimens and the best specialists at numerous prestigious centers in the northeast, the cancer metastasized. He failed on both zytiga and taxotere and is now on Xtandi. To watch a once vibrant man lose his virility, succumb to a permanent catheter, now walk with a cane and suffer from excruciating bone mets pain is next to unbearable. I have been at his side at every doctor visit, scan and treatment. Right now, I am tired and done in. I know he has the cancer. But it has also majorly changed my life....from intimacy, to retirement plans, to growing old together. Yes, I have been there and will be. But the cancer should not negate, erase or minimize the needs and life of the caregiver.has "" target="_blank" rel="nofollow">http://caregiver.has " target="_blank" rel="nofollow">caregiver.has anyone else experienced this? I feel guilty and even ashamed for writing this. But even with counseling, and no I am not depressed, I am just plain in burn out mode and do not know how to extinguish . Thanks.
My friend I went from a wife to a caregiver in the blink of an eye 4 years ago with my husband . He has a rare blood cancer. My life changed everything was about his needs and his cancer. I am mentally and physically exhausted. No one knows on the outside what it feels like to be a caregiver unless they have been one. Cancer rules the house. Any and all my needs have been shelved due to this dreadful cancer. At times I feel I just exist in a world when I should be living. All caregivers get is older !!!!! It's not his fault and its not MINE. I now know what it is like to not be hugged touched made love to and to sleep alone. I feel like my life is being sucked out of ME. I at times feel nothingless. It's unexplainable how I feel. I will be with him to the end but never expect any joy of being a caregiver. When I should be living my life is on hold in limbo. I often feel isolated in this world of hell, because family and friends don't REALLY understand because again they have not been caregivers. I could write a book on the suffering of a caregiver. My husband will die because there is no cure but when we don't know. So I will continue on this caregiver job journey and hope in the end I still have some life left in me to live. Sounds selfish but its true for me anyway.

RE: Caregiver struggle

by KellyC on Sat Feb 23, 2013 10:47 PM

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I completely understand and empathize.  My husband was diagnosed with a heart problem 10 years ago and the prognosis was 3-10 years.  I am usually a workaholic but gave that up to take early retirement and pursue his dream of fishing, boating, camping and hunting in the great Northwest, over 1,400 miles drive from our family and friends. 

We sold our house and bought a new house completely depleting our funds to remodel in Oct. 2008.  We jumped in with both feet and had the house finished in 6 months ready to enjoy our new life.  I planned on working again to make up our savings.

The next month he was diagnosed with kidney cancer.  He had a football size tumor, right kidney and a bit of his diaphragm removed in June 2009.   They said they got it all.  We went on a cruise September 2009 and we thought we would be good now for awhile.

Kidney cancer mets comes piece meal - first the lungs usually then the bones and other organs.  His progression followed suit.  Lungs in late 2010 and early 2011 - partial lobectomy, Bone mets to sternum and ribs late 2011 and radiation and chemo stared early 2012.  The bone pain is absolutely excrutiating for him and so sad for me.  The prognosis is months, not years.

Our lives have been surgery and chemo and endless procedures.  It's all about the cancer.  Is this the month that the afinitor will stop working?  Is this the pet scan that will show new mets.  It is horrible.

My emotions vary so greatly from depression to anger.  It's rarely happiness any more.  I feel sorry for myself and sorry for him.  The guilt is overwhelming sometimes, especially when I picture a life after his death.  GUILT, GUILT, GUILT!

The tears can come in seconds.  I can be sitting in a restaurant or at the market.  The emotional pain swells in my chest and it hurts.  I feel so guilty if I think about going back to work although it may be that I have no choice.  Every time I start to return to work something new happens.

I use to pray for a cure.  Now I pray that he will not suffer any more pain and that the end will be easy.  I am so tired and the worse is yet to come.

Thanks.

 

RE: Caregiver struggle

by MizJay on Thu Feb 28, 2013 04:01 AM

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Wow, you have all given me a lot to think about. My husband is not terminal, but I am still in pretty bad shape. He is going through a difficul treatment: chemoradiation, which is chemotherapy and radiation therapy at the same time, for a head and neck cancer. I am so exhausted and depressed, and yet I have something to hope for.  It is so hard to watch him suffer, and suffering doesn't really bring out the best in anyone's personality. I try to understand why he isn't being his kindest right now, and I DO understand, but it still hurts, and I've very socially isolated right now, which is hard for me. I really don't have time for anything but work (which I'm doing part-time, on a laptop from home right now), housework and running errands, and taking my husband to his treatments. I'm not getting adequate rest, because he's up a lot at night, vomiting, and spitting up thick, phlegmy secretions caused by his mucositis. For me, there's more to do than ever, since my husband can't do his usual chores, and there are so many extra things to do: pick up prescriptions, pick up medical equipment or supplements or papaya juice or this or that, all these ridiculous things that are supposed to ease the treatment side effects, but don't ever seem to.  And of course, we have LESS money yet more EXPENSES than ever. 

In my mind, I know that having a chance of recovery is very important and I am thankful for that. But emotionally, I am just depleted right now.  I feel all used up and worn out.  I know my husband has so much more to complain about than I do, but he has a CHANCE to complain... I just smile and ask him what I can get him and carry everything heavy from the parking lot to the infusion room to the radiation oncology center and back to the parking lot. A lot of times, too, I find myself wondering if he would do this for me.

Thanks for reading, ladies.

RE: Caregiver struggle

by nikola61 on Thu Feb 28, 2013 04:25 AM

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I know how you feel. My husband was diagnosed with prostate cancer 7 years ago and after the surgery he went into depression and heavy drinking and 7 years later the drinking is even worse because he has so much pain.

The doctor warned that if the cancer had spread it would most likely be bone cancer or lymphoma. My husband does not want to know so he will not see doctor and has not since the surgery.

  The last couple years there has been a terrible odour off and on but now it is constant and very strong. He hobbles around and has back pain, hip pain, wrist pain and ankle pain and just drinks more and more. We have no idea if it is cancer or not.

But I do believe he should find out and then if he decides against treatment then that is his choice. Not knowing is making life pretty tough for his family.....and scary too.

He thinks he lives in a bubble but his behaviour has alienated his kids and myself. I am so angry with his selfishness that I honestly think it will be a relief if he does pass but how sad that we are so angry that we probably will not care.

Sick or not, I really do not know how much longer we can deal with this

RE: Caregiver struggle/ selfish people

by KellyC on Thu Feb 28, 2013 08:47 AM

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Sometimes it's so tough to find peace of mind.  It can elude me for days at a time.  Sometimes my anger at the situation can manifest in inappropriate behavior.  I don't know...maybe it wasn't inappropriate.

Today we went to the doctor because my husband has a bad cough.  I was worried that it's pneumonitis (lung lining infection) from chemo. The last two months has been horrendously busy.....pet scan, two oncologist appts., bone scan, two root canals on necrotic teeth because the bone builder caused bone loss, two general practioner's appt., extreme pain for my husband, and anxiety for us that comes with waiting for scan results. 

So we were in the exam room and this little smart ass medical assistant comes in and calls me "wifey".  She hurries us like cattle through the drill....blood pressure, temp, questionaire, etc.  She shows zero compassion for him and treats me like I am nothing in the room.  Every time she addresses me she calls me Sweetie. 

She starts entering the info into their little computer so that and she decides, cuz she isn't listening, that she will enter sinus infection.  I tell her it isn't sinus but she proceeds as if I didn't have a brain in my head.  I silently mouth to my husband, "it's not sinus, say something."  He signals me to just let her go on and ignore it. 

She then looks at me and says, "and of course Wifey, you want to eliminate pneumonis (she said it wrong) as a contraindication for his meds."  I am steamin'.  I am pissed.  It was Wifey and HOW she said it. 

So I go off.....I say to her, "Listen Sweetie.  You are not to call me Sweetie or Wifey or anything else.  You are condescending and rude."  Anyway, she then starts back peddling and tries to justify and deny.  Blah, blah, blah.

She tries to shake my hand and I said I don't want to shake your hand, I tell her I'm pissed. 

Under normal circumstances I'd just've ignored her or blown her off but my life isn't normal.  I don't get to let little things bother me like no big deal, because every thing is a big deal.   I was upset for 9 hours.  It's the uneasiness, the anxiety, the big picture.  I beg God to help me with my attitude and my thinking. 

People that haven't been a caregiver have no idea of the pain we go through.  Keeping up a front can be really difficult especially when the patient is difficult.  They pick convenient targets and it's usually the caregivers and the people they love most.  And sometimes this gets paid forward, like the med asst. today got a dose of my pain. 

nikola61, I think you should tell your husband that radiation will help the pain and that he can get really good drugs that can keep the pain to a minimum.  Maybe then he'll zone out and won't be such a jerk.  Just because they are sick, they don't get to be asses all the time.   And if it isn't cancer and his time isn't limited?  What if it's arthritis?  The bad odor is failing to go to the dentist?  You might be faced with other decisions about your life and how you want to spend your time.

I hear you.  Thanks for hearing me.

 

RE: Caregiver struggle/ selfish people

by MizJay on Thu Feb 28, 2013 02:29 PM

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Good for you, Kelly, for not letting the medical assistant belittle you!  "Wifey," indeed. I can't believe anyone would dare use such a term in this day and age. Unbelievable!

And I think your point is right on about how the patients take out their frustrations on convenient targets and those targets are usually the caregivers. When my daughter was little, I got the same kind of "love" from her.  Sigh.  

Thanks for sharing your experience and your insights. I hope things get easier for you soon. 

RE: Caregiver struggle/ selfish people

by Nettty on Thu Feb 28, 2013 02:46 PM

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Hi all, I fully understand where you are all coming from. What a depressing situation we find ourselves in, as care givers. As our once, hard working, kind, generous and loving husbands become grumpy, in constant pain and frail, what can we do to truely help them....so little, I feel. Out life changed 3 weeks after we moved into a brand new house that took 2 years to design and build. What a SHOCK it was when the blood clot in his leg was caused by kidney cancer. At first, I thought we can beat this and we will...but now I'm wondering. Too many bone mets to count, and all he can do is sit on the couch due to the pain. You are all right no body can understand the daily struggle with the guilt, the worry that the drug will stop working and the fear we have with every scan and Onco visits. People think their life is tough! And, as you mentioned Kelly, the tough part is still ahead of us! I hear you all!! Nettty

RE: Caregiver struggle/ selfish people

by MizJay on Thu Feb 28, 2013 03:01 PM

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I second that, Netty:  "People think their life is tough!"  It is hard for me to relate to other people now, when we talk about things or I see their Facebook posts (which is, sadly, one of my main forms of social contact these days). Their concerns now are so different from mine, just a world away. I wish I had their problems, not mine! It makes me feel so isolated. I try to find ways to break out of the isolation, but it's pretty hard because my husband is so fragile and I don't want to live him alone for long, to go meet with a friend or go to a support group meeting.  

RE: Caregiver struggle/ selfish people

by Nettty on Thu Feb 28, 2013 03:31 PM

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Oh I can relate to the constant feelings of guilt! Going out feels so liberating, but then so self indulgent, that I just want to get back home again! I had a shop yesterday with my mother & sisters and felt guilty! It's terrible.... Luckily we are still able to go out for dinner occasionally but it's not easy. What's your husbands history? Mine has kidney cancer, diagnosed 17 months ago. It's been a slow decline in his health & mobility since then. He is only 52yo and was looking forward to travelling & retirement. We live in Australia. Nettty
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