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Tips for Caregivers?

B312C
Posts: 16
Joined: Mar 2018

I had an earlier thread a few weeks ago about my wife who is young and recently diagnosed

 

we found an excellent dr and are into the chemo treatments. round 3 is just around the corner

 

this is a steep learning curve for all of us but we are managing

 

Ive read a few threads here and other places on spouses and how to cope

 

its somewhat difficult going through the many many posts that discuss specific treatments and current situations, new news etc from the posters

 

I'd like to hear from people in my position or anyone who can give me advice in how to manage the emotional swings of the patient and caregivers. 

 

what do you do when sh*t gets ugly on the home front? how do you deal with hearing some not so nice things from your partner?  how do you manage the uncertainty of it all? 

 

tips and links welcomed 

 

thanks

 

 

 

JanJan63's picture
JanJan63
Posts: 2026
Joined: Sep 2014

You are in a very tough situation. I'd hate to be the caregiver, I don't know if I could do it. My husband has been wonderful so maybe I can give you some tips from our experience because he did come out with some stuff that wasn't so wonderful. As you know, there's no guidebook for this.

I can't give you any specific information on the latest treatments because every situation is different, chemos are different, protocals are different. We can help if you tell us what chemo she's on and what's happening.

As for being a caregiver, here's what I've noticed. I didn't like my husband bringing up the subject when around friends unless it was already part of the conversation. I hated it when he said things like "you should just be happy to be alive" when I cried about feeling miserable or lamenting why I had it. That one really got to me. But that was a few years ago.

The best thing he does is lets me say whatever I want even if it makes him sad or upsets him. Not that I'm lashing out but if I get down in the dumps or am angry about it all or upset because something recent has happened or I have a test coming up, he listens. And he never turns it around to himself. He's never said he doesn't want to hear it because it's upsetting, he never says I'm making him feel bad which lets me know I can confide my ugliest and most depressing thoughts that I can't share with anyone else. He mostly just sits and lets me vent. Or he'll say he can't really understand but he thinks he'd feel the same way or things like that. And he doesn't try to man fix the situation, which he can't anyway.

One of the best things he does is sit near me and just let me talk without interrupting or judging. The only time he tunes me in is when I tell him I feel guilty about the whole thing. Which I do even though it's not my fault. I've just about ruined us financially by not being able to work and I feel horrible about it. The dreams he had for his retirement will never happen now and I feel very badly about that. Sometimes I'm so sick that I feel useless and like a huge burden. He insists he doesn't feel that way. 

I hope this helps in some way.

Jan

Annabelle41415's picture
Annabelle41415
Posts: 5667
Joined: Feb 2009

It's a rough situation to be in and like Jan I'm not sure I'd be any good at it.  My husband was wonderful at listening, letting me cry, going to appointments, cleaning up my accidents (which there were many many many), and going to every doctor appointment, test, surgery, treatment, and anything else.  Things will fall in to place for you and your wife.  Just wishing you both the best.  It's a struggle but you can get through it.

Kim

darcher's picture
darcher
Posts: 255
Joined: Jun 2017

 Hug your spouse a lot and tell her you love her.  She'll give you hell sometimes but if you think about it, she's on death's front door step.  That's not pleasant. Don't take any of it in.  It's just the garbage from the disease talking.  I've punched holes in a garage door and dented a washing machine out of anger.  The wife gave me crap for wrecking things.  So what, I said.  I paid for it.  laugh and cry with her. 

beaumontdave's picture
beaumontdave
Posts: 805
Joined: Aug 2013

A heavy bag is a useful item, avoids damage to objects and knuckles, lol........./.........................Dave

Twinzma
Posts: 124
Joined: Jan 2018

It's hard to be the caretaker. I find myself often wishing it was me with cancer and not my soulmate. My husband doesn't want to talk about it so we don't. I want other a second opionion, I read all the studies, I research the best hopsitals and it's in vein. He is going to fight his way and his way only. I often feel so shut out that I am living with a stranger. When I asked him, what if it were me what would you do and he said let me make my decisions so there you go.

As his caretaker, I can only do so much. I go to all his appointments, I rub his neck and run my fingers through his hair at chemo. I make him whatever he wan't to eat, even if it isn't healthy. I talk about our future as if there is no disease. When his CEA came back at 63 down from 212, I bought him a bottle of his favorite wine (he's drinking anyway).  I am just there if he needs me. 

We are not guaranteed tomorrow, not a single soul is. He could be killed in an accident driving home from work. So I try to embrace his cancer as our wake up call, I speak softer now. I don't mind his snoring like a trucker. I watch all the games on TV everynight with him despite that I can't stand them. I hug & kiss him more often and tell him I love him all the time. I hate to travel on holiday weekends yet Memorial Day we are headed to the beach. I give as much as I can, when I can and how I can. That's all we as caretakers can do. 

You may wish to find a support group in your area to join to speak with others. Call your local hospital and see if there is one hosted there. 

Grantlynn
Posts: 3
Joined: May 2018

Twinzma, I as a caretaker really needed to hear that,  thank you

Mikenh's picture
Mikenh
Posts: 775
Joined: Oct 2017

My recommendation for caretakers - take a long break from time to time. Ideally there's someone else to help out.

OzarkGal's picture
OzarkGal
Posts: 41
Joined: Oct 2017

I second Mike.  If you don't take care of yourself, you will not be able to take care of your loved one. 

vtspa6
Posts: 172
Joined: Aug 2015

My husband will yell and when I offer a suggestion he says "You don't have cancer so you don't know what I am going thru!"  I have learned to just keep my mouth shut.  And then there are your friends, family, ect. that will put their two cents in.  My husband is very stubborn and will still try to do things he shouldn't like cutting the grass (even tho I  tell him that I will do it).  People see this and think how awful of a wife I am to let him do this.  Sometimes I think I just can't make anyone happy.  I know he is trying to make things as normal as he can and like it used to be.  But if and when the cancer takes him, I would take all this emotional stuff back in a heart beat!

Annabelle41415's picture
Annabelle41415
Posts: 5667
Joined: Feb 2009

It's got to be hard dealing with this.  He still wants to cut the grass because he doesn't want "it" to beat him.  He probably won't be very kind sometimes, but it just goes with the territory of being a caregiver.  You have the job nobody wants.  You sound like a good wife and caring as well. Wishing him well on his new treatment.

Kim

phuckcancer
Posts: 61
Joined: Apr 2016

1st...   ((((hugs))))

it's SO TOUGH!
my hubby has always asked me to not cry, to stay tough (for him), to be the positive one... etc....
I have and still do try my versy best. I have had several times when i have lost it in front of him  (sometimes it just cannot be stopped) but mostly I vent to friends or get in my car, turn my music on, drive and cry.

tips...
you have to take care of yourself as hard (and sometimes selfish as it sounds) as it may seem. YOU are the support and without you it will be much more hard for you both.
research what you can but also be intune to whats realistic.
ask questions to drs and WRITE down info, keep a notebook of things dr say, lab result info, etc

B312C
Posts: 16
Joined: Mar 2018

for the recs. this is very hard. emotional roller coaster is to be expected but dang shecan be hard on me. I want her to focus on being comfortable and positive but it wells up and she explodes.

 

I am trying to let it roll off but sometimes it is just so mean that its difficult to ignore

 

thanks Jan - and I am thinking of getting my own immerman angel - that could help

 

so far the advice is - take care of yourself - through breaks and time away? its tough getting time to myself but I'll keep after it - don't take it personally? ok easier said than done but yeah

 

 

 

Belcoron
Posts: 1
Joined: Jan 2017

We've been booted out of our old "normal" life and have been forced into a new life, a world that revolves around cancer. I am also caregiver to my wife of 35 years. She has stage 1V colon cancer, mets to lung, deposited tumors to abdomen, and breast cancer that was also operated on. The cancer takes a hell of a toll on our little ladies, and I think it can be most difficult for them emotionally.

Sometimes what comes out seems downright vile but they are hurting and I don't think they really mean to hurt as bad as it seems. My wife sometimes apologizes for putting me through this but I tell her it wasn't her choice. Life's like that. It's good until it's bad.  I tell her it's ok, it's the cancer talking. When she has bad days she sometimes won't talk to me. I wait. When she cries, I just hold her. If she is in bed and starts to cry I go in and hold her.

I try and pick up the slack and I try and pick up the pieces.

When she has good days she is really happy and appreciative of her life, family and friends. We try and do enjoyable things together while we can. Go places we wanted to go but hadn't, and these can be just simple things and places as simple as a park or cafe that we had never stopped at but always wanted to.

My motto is simple. Put one foot in front of the other and lean.

Enjoy and love. I can't give her much more than love and laughs and when it boils down to it is there really much more?

I hope our time together is still long but I know it may not be. Reality is the kick in the butt but we don't have to let it hurt too much right now. There will be time in everyones life for that.

 

Trubrit's picture
Trubrit
Posts: 4400
Joined: Jan 2013

What a wonderful, uplifting post (other than calling us 'little ladies' Yell).  The love you have for your wife of 35 years, flows from the page. 

I wish you both the best, and look forward to more posts on the forum from you. 

Tru

B312C
Posts: 16
Joined: Mar 2018

to see if I could gather any new intel

 

things are going well for my wife although when she isn't feeling well it does take a toll on us

 

CEA is down from well over 3000 to under a hundred

tumors have been shrinking and she has gone from inoperable to possible - next scan in a few weeks 

$$ is flying out the door so fast I cant even keep up

the support network we have is solid and I cannot imagine what its like for some people who dont have that

we have a baby and that puts many a smile on her face

we try to do as much as possible for enjoyment and that helps

thanks again for the replies

my best advice would be to learn to bite your tongue when its gets nasty and let it roll of your back - it does seem to pass

 

 

 

Annabelle41415's picture
Annabelle41415
Posts: 5667
Joined: Feb 2009

So glad that you posted an update on your wife and great that her numbers have reduced so much.  Wonderful news about a possible surgery due to the shrinkage of the tumors.  It sounds like your wife is responding well.  Children can bring smiles to many so I'm glad that you and her are enjoying those special times.  Continue the smiles - you have much to be thankful for according to your new post.  Hope all continues to go well.

Kim

Lovekitties's picture
Lovekitties
Posts: 3283
Joined: Jan 2010

While not the first choice for most, the depression of having to face cancer and possible death can radically change a person as well as influence their ability to deal with what must be done.  It is possible that she could use some dosage of antidepresent.  Like I said many don't even consider it, but as unhappy as she is with you she is more likely 100 times more afraid for herself.

Marie who loves kitties

 

JeffJ318
Posts: 1
Joined: Sep 2018

Be brave, my friend. I , too, am a caretaker and husband. We do everything together. Go to chemo, talk with the doctor, etc. Be with her the entire journey.

Do research on your own and share some with her, howerver, do not overload. Be kind and tender. Rub and massage her back, feet or whatever she likes.

That will help ease some of the discomfort for her and the physical connection is great for the two of you.

Write her loving emails, leave cards with scratch offs, etc.

Show her you care not only in words, but in how you treat her and care for her.

My best to you and your wife on this stressful journey. May God bless you and your wife.

Canesgirl
Posts: 1
Joined: Sep 2018

Here is my 2 cents for what it is worth.

My husband was diagnosed with a 3mm tumor in his colon at the end of 2013. He had surgery at the beginning of 2014. Stage 1 no chemo. We pretty much went on with life as ususal. When he got the diagnosis, he couldn't even say the word cancer. During that time I was just there for him. I knew that he would have to slow down for a bit post surgery and I made sure that I ramped up my game with serving hime more and being available. I cut my activities for work down in the evenings and made sure I was around.

Fast forward a year 1/2 later it came back- stage 4 with mets to the liver. He again had surgery- 20% resection with 6 months of chemo including Folfiri and Erbitux. We ncknamed them long and short chemo. He had chemo on Wednesdays and by Saturday he could barely get out of bed. We had breakfast, lunch and dinner in bed and binge watched netflix. My type A personality had to learn to relex. He worked the whole time he had chemo and I dealt with judgy friends who told me I should be home with him (he wasn't home). After the 6 months, we celbrated with a trip to Europe. 

Fast forward 2 more years and his CEA is rising. Waiting for the pet scan results. 

For me, it has been about loving unconditionally and knowing that he is hurting and a little scared. It is about being there for him. but at the same time knowing it is ok for me to cry. Journaling and listening to music helps. Talking to a therapist was very helpful as well. It is hard when your friends dont know what to say or how to deal with what you are going through. I think it is about accepting a new normal and knowing that each monent and each birthday is precious. It is about doing what you can for as long as you can and hoping and praying for the best outcome We are nearing 29 years of marriage with 3 fantastic kids and I can't imagine my life witthout him, but I know that could at some point be a reality. Untll then, I will be an advocate and cheerleader for him and make sure I take care of my own needs as well.

Trubrit's picture
Trubrit
Posts: 4400
Joined: Jan 2013

Thank you for your thoughts.  It is good that you have been able to care so well for your hubby, and roll with the punches that both have you expereince. 

I wish you both the best as you move forward and hope that you join us again and share your wealth of knowledge and expereince. 

Tru

Tru

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