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a caregiver's depression

skeets1961
Posts: 56
Joined: Dec 2014

My husband has had a pretty rough weekend.  First day he was in excrutiating back pain which he took morphine for it which barely got him through the pain.  I asked to take him to ER and he refused.  He's only been to the hospital once and that's when the cancer was diagnosed and surgery, chemo after.  Today he has slept all day but maybe one hour.  He's broken out in sweat and is just fatigued.  Today is day 8 after chemo was given and before, the 2nd week was always his "good week".  No more.

I'm just beside myself.  I see a counselor and a psychiatrist for depression meds which helps but it doesn't change the fact that my husband is terminally ill.  I haven't done much today except for keeping an eye on him to make sure he is comfortable, drink, food, whatever.

i just really feel closed off to the world around me.  I may meet a friend once a week for lunch but i still feel like i'm on the outside looking in.  It seems nobody can really relate unless they've been through this.  I'm on a leave at work thankfully, as i don't know that i could cope doing both.

I'm really sad, not sure this round of chemo is going to work as the first didn't.  He seems to be getting worse than better.  We have been married for 35 yrs this year, married at 18 and 19.  When saying our vows at that age, one never thinks it might come to this.  

Thanks for listening.

Edie

jen2012
Posts: 1607
Joined: Aug 2012

I'm sorry Edie.  I do know how hard it is and it just sucks. I too feel like no one gets it.  I tend to separate from other people because I feel like everyone knows and we just don't fit in.  I just came back from my daughters softball game and stood on the opposite side of the field.  

it just sucks.

I wish I had some advice for you, but I struggle too.  

do the doctors know he is so wiped out and in pain? 

skeets1961
Posts: 56
Joined: Dec 2014

When the Onc asks him how he's feeling he says "pretty good".  Well, maybe for the moment but he never brings up the bad days in between treatments.

 I do believe that people are real uncomfortable and don't know what to say to us.  I'm sorry for your pain also.

jen2012
Posts: 1607
Joined: Aug 2012

My husband did that too!  I became a tattle tale. I either email the doc or bring it all up when we are there.  It got too frustrating to see him feeling lousy at home and telling everyone else he was fine.

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Edie, you are so right, nobody gets it unless they've been through this. I tried to talk to some family on my husband's side, but they don't get it, they say something back not very approriately, this just made me more upset. Me and my husband would just be holding each other crying on each other's shoulder. If you can find some help from counselor, that would be nice. I think I might look for a counselor or a psychiatrist too.

skeets1961
Posts: 56
Joined: Dec 2014

Talking to the counselor seems to help but the raw emotions come out and you are just emotionally drained.  Afterwards though, the release makes you feel better.  I see my counselor once a week and pschyciatrist about every 6 weeks.  I hope you can find the help you need.

Trubrit's picture
Trubrit
Posts: 5222
Joined: Jan 2013

I know they aren't like real hugs, and I wish I could come to you and just hug you. 

I am so very sorry for your pain, and of course, for your husbands pain. How hard it must be to watch someone you have lived practically your whole life with, in so much pain, and dwindling. My heart really hurts for you.

I cannot take your pain away, and I know that all the pills in the world can't take your pain away, but please know that all of us here are with you in spirit, holding out our hands in support and love as you carry this heavy heart. 

Sue - Trubrit

skeets1961
Posts: 56
Joined: Dec 2014

Thank you Sue, you always have the kindest, heartfelt words for everyone.

Yolllmbs's picture
Yolllmbs
Posts: 361
Joined: May 2014

i was a caretaker in the past to my parents and mother in law.  I'm now going through recovery from abdominal surgery. My husband is the caretaker. I think it's harder to be the caretaker. It's such a helpless feeling. Cyber hugs and many prayers. This is such a great group of supportive loving people. 

 

Yolanda

beaumontdave's picture
beaumontdave
Posts: 1069
Joined: Aug 2013

This **** hurts, there's no way around it, but you can find moments that, amplified by the pain, are special. I did with my wife before her GBM took her. I lived in the moment and held her tight, and now that she's gone, I have no regrets. We were there for each other through everything, and she's with me still, holding me close with the memories of her strength

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I've often said that I feel you guys have it worse in some ways than us patients.  I've been on both side of the fence (my sister died from cancer) and the feeling of helplessness watching someone you care about suffer is terrible.

Some thoughts...

-just because the chemo didn't work the first time, doesn't mean it won't be effective this time...I've known several patients who had to try two or even three regimens to find the one that did the trick

-for me, the effect of chemo was cumulative, and my "good" week got a lot less good as I went along, but the extreme back pain seems more than might be expected.  Might be worth a call to the doc (which you can do for him if he's not willing) to see what they think.

-take care of yourself!  Go out to that lunch, or whatever else you can think of that  might lift your spirits, even if just for a short time...take a walk, go to a movie, wander around the mall...whatever gives you a little pleasure.  And if the depression gets too overwhelming, consider talking to your doctor about medication.  This won't change the sadness of your situation, but it might help a little.  You certainly wouldn't be the first caregiver to need some help in this regard.

Hang in there.  This is such a hard path to walk.

Big hugs~AA

LindaK.
Posts: 496
Joined: Apr 2013

Edie, I don't really have any advice for you, but just know I've been there.  It is endless stress, worry, exhaustion, etc. for us as caregivers.  Our daughter is a nurse and lives nearby.  She came over every day while he was on home hospice and that would be the only time I would leave my husband.  I couldn't leave him alone while suffering and struggling.  I slept when he slept, like having a baby at home.  When I finally took an FMLA leave, some of the stress was relieved and when I took him to the hospice facility, more of it was removed from me. I was able to just "be" with him while the staff took care of him physically. 

My husband passed away about 6 months ago, this coming Monday would have been our 30th anniversary.  I have a feeling we are very close in age.  No one really gets it other than people who have been through it before  My sisters were very supportive to me, but had no idea how to act or what to say around my husband.  That's OK, I know they meant well and continue to be great support to me.

I think the oncologists should form a caregivers group.  After my husband passed away, I never heard one word from anyone in his oncologists group.  I finally mailed them a letter with some suggestions on how to help future widows/widowers and that was one of the things I suggested.  I went on anti-depressants, ironically enough, when my husband was NED.  When his cancer came back, my doctor doubled the dosage and I continue on that higher dosage.  It has helped me.  I also occasionally take Ativan when I can't sleep or get very sad (always at bed time!)  Don't be afraid to be very honest with your doctor about how you are feeling.  Don't let them brush it off as "female" issues. 

I would also talk to his oncologist about the extreme pain and tiredness your husband is having, something may be off.  It's difficult to watch our beloved husbands in so much pain.

I wish you and your husband well

Linda

DD3's picture
DD3
Posts: 134
Joined: May 2013

understand your pain and anxiety.  When my wife was undergoing treatment I was on Xanax/Ambien/Paxil.  I was a mess.  I became a self induced recluse.  Wanted nothing to do with anyone or anything.   Problem is there are no words that make you feel better.  I wish there was something I could say or do for you.  I so know how you feel.  Positive thoughts and prayers your way. 

Daisy13's picture
Daisy13
Posts: 43
Joined: Nov 2014

You will find the strength and you also be challenge mercilessly. Try to take care of yourself as best you can and also be as present as you can be with your husband.  He may beat this disease and he may not ... it is just the facts one cannot ignore. You want to live as fully and as presently with him as possible.  I wish you both courage and hope your love will keep you both in the light. Peace ~ Daisy

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I have nothing to offer because I'm on the other side of the fence. I can, however, see what's it's done to my family. I came very close to dying in December and it was touch and go for a couple of weeks. My 26 year old daughter and I are very close and I think she's now suffering from a form of PTSD. She still wakes up screaming regularly from nightmares that I died. I wasn't conscious (sp?) through any of it and have no memory of it so I can't even comprehend what it must have been like. My husband is haunted by thinking about how he almost fell asleep instead of calling 911 while I lay dying on our living room floor. As hard as it's been for me I also think it's easier for me than them.

All I can say is that I hope you'll be okay. Next time he tells the doctor he's doing okay maybe you should jump in and tell him/her what's really going on. It might make you feel better and they might be able to make things easier for him. Good luck and stay strong.

Jan

UncleBuddy
Posts: 1019
Joined: Aug 2013

I can't really know your pain because it's my brother who has cancer. I do know the stress and confusion, feeling of helplessness and feeling emotionally burnt out. My husband doesn't understand. My siblings aren't as involved so it's me dealing with everything. You need to take care of you. As much as I didn't want to leave my brother, I went to Florida for the birth of my grandbaby. I spent 3 weeks away and it recharged my battery. My sister stepped in. She didn't do everything I did, but I knew he'd be okay. You need a break for all of this, whether it's a few hours or a few days. You won't be of any help to him if you get sick. Please see if there are any support groups near you. I don't have any close by, but I know our medical practice has them in other towns. 

See if you can find friends or family who can sit with him for a few hours a week so you can do something for you. You'll feel better and it will make him feel better knowing you are okay.

Good luck!

Lin

skeets1961
Posts: 56
Joined: Dec 2014

Thank you everyone for your kind responses.  He has chemo on Monday and then the following week he will be getting a CT scan to see if its working.  May God bless you all with health, peace and strength.

mbeaulieu's picture
mbeaulieu
Posts: 16
Joined: Mar 2013

Fingers crossed it is working!  I understand what you are going through, at the age of 27 I became one of my moms primary caregivers.  It is not easy but when you have a great support system that really helps.

I do wish you all the best and I hope for great results.

Michelle

beaumontdave's picture
beaumontdave
Posts: 1069
Joined: Aug 2013

I know some don't want to rely on a pill, but when I was diagnosed, I got a Xanax rx, the low dose, which came in handy for doctor visits and anxious moments. When the wife got her diagnosis they prescribed Ativan, which got her through mentally painful times right up to the end. I tried both and they seemed fairly similar, but the point is, with occasional use, these anti-anxiety drugs do work to get a person over rough patches, both the afflicted and the care giver.......Dave

TrustHopeLove
Posts: 3
Joined: May 2015

Edie,

Reading your post was like reading something I've written. My husband was just diagnosed with metastatic colon cancer. Surgery isn't an option yet, he's been enrolled in a chemo clinical trial. He's in so much pain. There isn't anything i can do other than sit there, offer food and water, and rub his back (that seems to help a little--I'm sure you've tried that already).

When the oncologists ask him about his pain he says "I'm okay right now," or "Eh, it's not so bad right now, maybe a 5," but then hours later he's on all fours on the floor of our bedroom  sobbing in pain. I always have to jump in and tell the doctors what's going on. Then he gets embarassed and is angry with me after the appointment

I've never experienced anything like this. Neither has he.

His mother called me inconsiderate because I wasn't giving her minute-by-minute updates via text and calling her every 30 minutes to tell her what the doctors were saying. We spent that entire day going from test to test and were with the oncologist for 2 hours straight. His oncologist told us that day that his treatments would likely make it impossible for us to have children. She told us that he would most likely never live to be an old man. I was unable to do anything but ask questions and talk to doctors for 5 solid hours and his mother called me inconsiderate? After she texted me 11 times asking me "is he going to make it?"

I lost it. I had held it together all through that long, terrible day. Then I couldn't. I don't think I can ever forgive her. 

I kept my phone turned off for two days.

I'm doing everything that I can. I know I'm doing a better job than I give myself credit for. It's just...caretaking is the lonliest job in the world sometimes.

My husband gets mad at me and says angry, spiteful things to me sometimes. I know he's not really mad at me, but he's upset and I'm the only one to take that out on. Then I cry. Then he feels bad. Then we just cry together for a little while. He is in pain, he's angry, he's scared. I know he's not really doing this on purpose. I know I'm really not angry with him, but with his disease.

We will be celebrating our one year anniversary June 24. I haven't had enough time with him yet.

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