To all the caregivers out there ...

DShaw

How do you deal with a stubborn spouse?  My husband has completed 28 of 35 radiation treatments. He’s in extreme pain but refuses to take any pain meds because he’s worried he’ll get constipated. He’s barely getting any Ensure in, maybe two a day. Not nearly enough water. When I tell him he’s being foolish and stubborn he tells me I don’t understand what he’s going through. He doesn’t have a PEG tube and is adamant that he’s not getting one. At this stage of treatment would he even be able to get one?  I’m betting his lab work on Monday won’t be good. Last chemo is scheduled for Tuesday. 

 

I’m scared, frustrated and worried. Has anyone else dealt with this?  Any advice?

Chicklette

I hear you

Hi.  I was caregiver to my husband and constipation was probably the worst of his problems.  It was caused by the anti nausea drugs, though.  He didn’t have a PEG, but managed to eat and keep his weight up.  It’s so hard for us to watch our loved ones suffer.  If he’s not getting enough nutrition, they might hospitalize him (not saying this to scare you, but so you know the doctor is watching for this, too).  That might also get him incentive to eat.

so, I don’t have a lot of advice, but you are certainly not alone in the frustration.  (Hug)

ByeByeCancer

Yup, my spouse was pretty

Yup, my spouse was pretty stubborn too! I'm not sure which Ensure your husband is drinking but I highly recommend the Ensure Enlive (350 calories each).  I would pour an ensure and a benecalorie (tiny little glop of stuff that added an extra 330 calories - available on Amazon) in a blender for my husband. If he could get that down it was 680 calories.  He sustained himself on 2 of these a day for about a week or so when things were the roughest.  Hang in there!  It is hard to watch them go through this!  

 

CivilMatt

I can drink that Ensure in 3, maybe 2 hours

DShaw,

It is just silly, to be stubborn takes all your strength (to be good at it).  He needs the nutrition to maintain his fight with pain while delivering an easy bowel (when needed).

I do understand what he is going through and I chose a much simpler path, a path where I did work hard to stay hydrated and nourished enough. H&N members have been going down this road for years and evidence points directly at hydration and nutrition as key to reaching a good new normal.

Matt

SuzJ

Im going to be brutal...

and I'm sorry.

But, you don't know what we are going thru. You know what we let you see us going thru.

 

I had this fight, with the east coast director of the company I work for, after accusing me of "milking cancer" (her words) I had her cornered after a meeting...

I asked how the h... you milk having cancer, she replied that she knows its hard as she's seen friends go thru it.. REALLY?

 

I was an EMT for 13 years, I was blissfully unaware as is most of the populace, of what it's like, I thought, you get cancer, you get treatment, you live or die, and if you live, youre cured and all better. How naeve I was.

 

Actually getting cancer is a huge learning curve. Those who were active here when I first started might remember my "I am superwoman, I'll be fine" posts.

 

Truth be told, if it wasn't for my 25 year old son, I'm not sure where I'd be. But he doesn't understand how bad I felt at times, Just like I didn't understand all his fears,  and heartache, .. its like its 2 diseases, we got cancer, you get cancer by association.

 

I didnt get a PEG, your husband will eat and drink when he can, sometimes you have to let someone get low, for them to fight back up.

 

I really hope I didnt offend anyone, I'm trying to make you see, you cant make us eat, or drink - its like herding cats, it aint gonna happen. Sometimes you have to act like you dont care to make someone care about themselves - reverse physcology - same as you use on teenagers

rsp

Not eating

Hi,

My husband is one year post radiation and chemo, and he was A LOT like your husband.  He did not have a peg tube, and ended up losing 90 pounds.  At one point, the nutritionist came to see my husband during one of his chemo sessions and said she felt he needed to be admitted to the hospital.  My husband was totally against it, but I insisted, and I believe it was a wake up call to him.

He still struggled to eat, but we ended up ordering Very High Calorie Boost from Amazon.  It has 530 calories, and when you blend it with a few scoops of ice cream, and Benecalorie (330 calories), he had a drink that was well over 1,000 calories. He had days that he could hardly get it down, but that is what kept him going.  In fact, he continued ordering the VHC Boost for an entire year after finishing his chemo/radiation.

My husband never got on this site, but it has been so helpful to me.  Here I am a year later, and I still get on just about every night.  When I read something I think my husband would be interested to hear, I read it to him. 

Nothing about this last year has been easy.  In fact, my husband still carries a water bottle EVERYWHERE because he has very limited saliva.  He says he can taste about 20% of what he eats.  So, the road to recovery continues... BUT. it is getting better (at a snail's pace).  I'll take it!

I understand your worry, and please know you are not alone.  There are so many people on here that have such wonderful advice.  I get on the site just about every night.  Please know you can reach out any time.

Renae  

christine2080

I’m also married to a stubborn man,

But that tenacity probably pulled him through treatment and is getting him through recovery. He pretty much lived on 1 Ensure a day (350 calories) for about 2-3 weeks and lost 40 pounds. While it was frustrating for me, I picked my battles. He had gained 15 pounds in anticipation of treatment and had a few extra pounds to spare so I knew this wasn’t the best for him, but wouldn’t kill him either. I simply could not force him to eat or make him get a peg. I made sure he stayed hydrated and talked to his doctors about extra hydration via saline infusions at chemo. After he finished treatment he went in 3 times (which we scheduled before he completed treatment) for hydration infusions. As soon as his neck healed up he started feeling better, his energy improved and before I knew it he was drinking 4 Ensures a day and is also eating pretty much anything he wants (even though he can taste very little). Hang in there. It is excruciating to watch, but I can’t even imagine how much worse it is to endure the treatment. I simply sat in the room with my husband while he rested and talked to the doctors and nurses about adding hydration.

soonermom

TOTALLY

My husband had a PEG tube and would not/could not take in enough calories and we had many of these discussions.  One thing that helped me was to be brutally honest with the treatment team and let them talk to him.  It does get better but the benchmarks for nutrition and hydration are very important.  In time I came to understand that my husband was not being stubborn.  There were actually reasons, that in their compromised state make their choices seem sensible to them.

soonermom

Agree

I agree about the VHC BOOST from Amazon.  Also agree, things at our house got a lot better when I accepted he is doing the best he can given what he is going through and this is not a purposeful negative behavior or acting out.  It is/was his reality and as hard as it is to watch you have to support them as they work through it.  There was no way that it was just being stubborn or that it could be solved by the caregiver giving them "tough love".  They just need love and support and information.  What they can or will do with it is up to them.  In the end, it is their life. One thing I came to understand is that he was grieving the loss of so many things and I needed to let him control everything that is was possible for him to control, including eating because the reality is that we are not walking their journey. Also, the best money we ever spent was a consultation with a GI doc about managing constipation related to treatment and meds.  He was MUCH more agressive about how to manage it than our treatment team.  We had a great treatment team but this was one time when getting advice from another specialist was priceless.  It was still hard, don't get me wrong but it got us over a huge bump on the treatment journey.  suzJ is so right, we don't get it. We have our own journey but it is not their journey.  

SuzJ

Journey

I wanted to add, I would hate to be on your journey.

 

We are on a rollwecoaster we cant get off, but the worst, very worst day, beyond all treatment - was telling my son, and watching his heart break. Even now, I wince at something, and he's all over me "am I ok, is it my neck, do we need to go to the hospital" - he doesn't get "no I just stretched too far, or it was a nerve ending waking up"

I have much love and admiration for all caregivers.

JAL23

SuzJ said:

Journey

I wanted to add, I would hate to be on your journey.

 

We are on a rollwecoaster we cant get off, but the worst, very worst day, beyond all treatment - was telling my son, and watching his heart break. Even now, I wince at something, and he's all over me "am I ok, is it my neck, do we need to go to the hospital" - he doesn't get "no I just stretched too far, or it was a nerve ending waking up"

I have much love and admiration for all caregivers.

The look of horror in my mom

The look of horror in my mom’s face when I got the call and then needing to call my wife at work to come home are burned into my brain as the two worst moments of my life. Worse than any of the treatments I’ve received so far. I have an immense amount of guilt for putting my wife through this. We had dreams of starting a family and owning a home and I can’t shake the feeling that I’ve ruined that.

Despite all of that, she remains one of the greatest caregivers I’ve ever met. A shining beacon of optimism who is there for me at every turn. No, she doesn’t understand what I’m going through, but I would be lost without her positivity and encouragement.

swopoe

JAL23 said:

The look of horror in my mom

The look of horror in my mom’s face when I got the call and then needing to call my wife at work to come home are burned into my brain as the two worst moments of my life. Worse than any of the treatments I’ve received so far. I have an immense amount of guilt for putting my wife through this. We had dreams of starting a family and owning a home and I can’t shake the feeling that I’ve ruined that.

Despite all of that, she remains one of the greatest caregivers I’ve ever met. A shining beacon of optimism who is there for me at every turn. No, she doesn’t understand what I’m going through, but I would be lost without her positivity and encouragement.

My husband has always said

My husband has always said how guilty he felt for putting us through this. He still says it 2 years later. But it was an honor for me to be his caregiver and to be allowed into his darkest moments. To be there for him through this is one of the greatest honors of my life. From the perspective of a caregiver, we signed up to love and protect you. And we will. No, I never quite understood how he felt. But I listened and I loved him deeply. He drew his strength from me and our kids. He is our hero.

Nancy24

Hang in there

i was a caregiver to my husband as he went through 35 proton rads and weekly Cisplatin during the summer of 2016.  He also refused a PEG And lost 30 pounds that he couldn’t afford to lose. He has since gained back 15 pounds, eats most things, has some dry mouth that is improving, and is adjusting to things not tasting as they did before. And best of all, he is NED.

i know how difficult it is to watch someone refuse to eat or drink.  Not sure how my husband managed to survive on so little for two months.  He was lucky that he could eat real food one month post-treatment.  Regarding pain meds, my husband rarely took any as he was on Gabapentin during his treatments and for a few months post-treatment.  He did have some constipation issues...perhaps from Cisplatin...and he took a stool softener for that.

We kept track of everything he ate or drank, including calories and grams of protein, beginningwhen he started refusing food until he was eating somewhat normally.  On the worst days he would drink one Ensure and one smoothie with nut butter and protein powder in it. Some days I’d sneak some ground up oatmeal, dates, flaxseed into the smoothies. He had days with only 500-600 calories.  I learned not to nag him but to just record everything and show him. it was a reality check for him and it also helped him to set calorie/protein goals and to track progress. As someone has already said, we as caretakers don’t really know what the cancer patient is experiencing.  He felt so out of control of his body and his life. Eating and drinking was the one thing within his control. I was lucky...he was willing to try anything and my Vitamix can liquefy just about anything. That being said, it was not the healthiest diet for two months but i had to let him take control of what he ate.  I just made sure that lots of options were available to him.

It’s natural to feel scared, frustrated and worried.  You want to take care of him and help him to get through this.  Do your best to make sure that he stays hydrated....if he won’t drink water, try apple juice.  My husband was practically addicted to it even though he had to keep rinsing out his mouth and brushing his teeth due to the sugar content. Try various high calorie protein drinks that others have mentioned. You might find one he prefers over others.  Let this forum help you get through this.  And remember to take care of yourself!!

Nancy

SuzJ

Noooo

Apple Juice - Nooooo... think of a thousand papercuts then read the ingredients... ascorbic acid, acetic acid, omg it hurt

phrannie51

It’ll be ok....really!

The best words I heard above were....pick your battles....a person can get through this with very little in the way of nutrition for a few weeks. They don’t recover as quickly as those who managed to eat or tube more, but they still recover. It is true that you are looking from the outside, in....and what the patient suffers through is subjective from patient to patient....none of us can actually say we felt exactly the same....bottom line, we’re all different. I also did not take any pain meds....my reasons were different than your man’s....but I stuck to my guns....and was glad  

I lived on one Boost VHC per day from July 5th till September 20th....I lost 20 lbs....and I had a tube. My husband would have loved it if I ate more, but I think it was because feeding me was something he could do and feel like he helped me.....there’s just so much powerlessness in the cancer world.....for everyone involved. 

P

SuzJ

Appetite

You'll be sick of me by now

 

When you're going thru treatment, it feels like your stomache is the size of a grape, remember when you diet, they say imagine its the size of your fist and dont eat more? Well I had a grape.

Before christmas, I'd have said, a tangering.. Halo maybe

 

Now, I can do a halo and a grape, depending on the food. (you have to have imagination for these descriptions lol

 

So treatment and up to about 2 months after, (May - july) = grape

After, gradually - (august - took a step back with surgery) 1 forkful and I was done

September - December, small Halo - if it had lots of gravy

January - Halo and a grape

 

Plus it is proportionate to how much I have to chew it, if your beat up from chemo, rads or surgery, chewing is the last thing, and dont get me started on liquefying dinner, UGH.

 

Eating is anticipation, how it smells, how it looks, then finally how it tastes.

My smell went wonky week 1, I could smell ensure from the other side of the house, no way, no how was I drinking all the chemicals I could smell. *shudder* I did soup, till I couldn't face soup any more, one can of soup lasted AGES. I hate soup now, but if Im tired I'll do soup just so I don't have to deal with chewing.

 

I look at commercials for food and think "omg, that meal could feed a family for a week!" Maybe Ive come out the other side a little on the crazy side? but I am more aware of what I am putting in my mouth than I ever was. Food now has to have a significant calorie and nutritional value, especially nutrition, calories second.

 

I lost, and am still losing, but thats ok with me, my Drs are watching it, and me lol, very carefully

AnotherSurvivor

I also took no pain meds,

I also took no pain meds, that's not heroic, I simply wasn't experiencing pain.  I got constipated anyway, you get that from the anti-nausea drugs, and the way of dealing is simply to match that drug with something like Colase, take one, take the other,  although if he's already there it's going to take a while for the anti-constipation meds to work.  After no poop for six days they reach for the enema tools, I just managed to avoid that, but I'd get him on Colase and keep him there until the end of chemo, plus a week or so. 

Dehydration should have him at least every other day in the infusion lab getting saline drip.  By the end I was at 2L daily.  There is probably also a home health service in your area who will train you and deliver supplies.  We (wife and I) became very good friends with our team.  We still drop by and give them hugs and (high calorie) presents a year after last treatment.   Hopefully he has a port or a PICC line because getting jammed with a needle for the drip will get old.  Nutrition is just always a struggle, search this site and try the many ways people have tried to deal with it.  They roll the dice on the stomach tube, there are people like me with no tube who lose a lot of weight, but recovery starts immediately after treatment.  There are people with the tube who don't lose as much weight and end up tied to them for months and have delayed recoveries.  My oncols practice tough love, that's why I picked 'em. 

I have searched repeatedly for some perspectve to my struggle, couldn't find any so gave up and in a medically calibrate method have taken up old bad habits.  Truth is I was so in hunkerdown mode that mostly it's sort of grey and fuzzy as a memory.    Right now my perspective is Aspen had great snow last year when I was sick and weak, we're getting nothing this year so skiing has socked for two straight years.  THAT'S A TRAGEDY.  

It does come to an end, it does get better.

FamilyLove

I had the same problem with

I had the same problem with the pain meds.  They gave me over the counter meds that helped.  I also had a g-tube and they gave me prescription meds to use in that.  

Nancy24

SuzJ said:

Noooo

Apple Juice - Nooooo... think of a thousand papercuts then read the ingredients... ascorbic acid, acetic acid, omg it hurt

Organic Pure Apple Juice

Hadn't thought about the ingredients in regular apple juice.  My husband drank "pure" organic apple juice.  No extra ingredients.