a caregiver's depression

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? 

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

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

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

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

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 said:

Thank you everyone for your

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.

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

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.