Giving up or denial or both

Laura Lynn

My mom is 68 and she has had 1 Chemo and 11 Rads. She seems to be in denial,not eating or drinking. So we spend more time at the hospital getting fluids. Potassium low also. Not sure what to do...

I am at a loss as to what to do. If she won't do for herself then, it makes it really hard to help someone that won't help themselves.

Any suggestions would be greatly appreciated.

Also she is not doing her baking soda mouthwash or her mouth excercises.


Laura

longtermsurvivor

Not knowing your mom's
emotional background, if she doesn't have a preexisting condition, then severe depression is a certainty. Is she in the hospital right now? This would be the ideal time to get a psych consult and get her started on the road to help. You are right, ultimately, she has to do something to help herself. You, nor anyone else can do itall for her.

If she is at home, family intervention could be better than your trying to go it alone on this. She needs shaken, gently but firmly, and people need to insist she get up and fight for this. That includes proper medical interventions (is she in significant pain? does she have other significant medical problems not being adequatelly attended to?). If you haven't already, recruiting the help of her existing team of health-care providers is important.

She should also come here and talk to us. The chances are we've been down most of the roads she's traveling.

And you should make sure this doesn't destroy you. Do you have help, or are you going it alone with her?


Pat

Marty36

I'd argue neither
My guess is that she is overwhelmed by what's going on and is just shutting down emotionally. Some of us want to fight with all our energies and some of us just shut down emotionally because it's so overwhelming. It sounds like she's very depressed and feels like the whole thing is hopeless. That's not being in denial. For her, that's the opposite of denial. But it doesn't mean she's given up.

Sounds like you need to bring in the medical team, including social workers, clergy (if appropriate), and the doctors. It may mean that she will be hospitalized where they will create a routine of care for her. Right now, eating and drinking are hard and painful. Or just annoying.

When I was doing rads and chemo, I resented high protein drinks and high calorie drinks and supplements. I still do. It takes every piece of will power to eat them. And I was able to eat and drink through all nine weeks of rads and chemo and had almost no pain. I just resented having to worry about having enough calories and protein. Nothing tasted good and eating--something I have always loved--had become a nasty chore that brought absolutely no joy. All the pep talks from nutritionists and medical people didn't change that.

But I was in a mental and physical space where I just continued to do it, even thought I hated and resented every second of it. Your mom may just not be in that space right now. It may happen or it may not. That's why it is important to talk with her medical team and empathize with how she's feeling about it all.

KTeacher

Getting
Mom is starting to get hit with the side effects. If you can have someone help by putting together Magic Mineral Broth--I found it very helpful. Smelling the broth brew stimulates the appetite. Use the broth alone or with any soups that you would usually make. Mom needs soft, easy food--smoothies, pudding, custard. Recipe for broth is on the computer, type Magic Mineral Broth in search, I believe Sweet has put it on the Superthread. If you cannot find the Kombu, the broth is still good without it. Mom will change daily and sometimes hourly.

sweetblood22

Laura Lynn
Just so you know, I had a peg tube, and was getting enough calories, and tons of fluids, but because of the stress on my body, it just was not enough. I took in 2400 cals a day between the Nutren, and yogurt, baby food, and prune juice, (in efforts to boost my potassium intake) as well as water, Gatorade, and I still had low potassium, and I still needed fluids by about the third week, once a week the rest of the time.

I realize that you may be frustrated, but I just want you to know that these things can happen, even if she was doing "everything right". Just keep doctors in the loop, and tell them everything. Does she have a peg tube? Does she have magic mouthwash and adequate pain meds? Trust me, you might not eat either if you were experiencing them burning you with radiation. Sometime when you are so very ill, it's hard to do for yourself. I did not have a caregiver, and believe you me, I'm not even sure how the heck I lived. I'm sure this is very difficult and overwhelming for you, as well as your mom. Try and be patient.

The Magic Mineral Broth can be found here:

HOW TO START EATING AGAIN.  Lots of soft food ideas and links to many recipes.

There is a link in there for the recipe, as well as other broths and recipes that may be easier for your mom to swallow. People were trying to feed me stuff with a very high degree of chewing, and stuff that burned my tongue, and then wondered why I didn't eat it.

Also, here is the link to the Superthread and there is a lot of info in there that can help you. Products to help with side effects and nutrition.

HNC  SUPERTHREAD

Wishing you and your mom only the best.

nwasen

giving up
I am sorry to hear of your mom's not wanting to fight this. I have read what all the others have written and I really agree with all and think maybe if she got on the boards it would help her to see that she is not alone.
Alot of us have overcome the odds and are beating the beast. I was stage 4 and am doing remarkably well. I took anti depressants while in treatment along with anti anxiety drugs also. I had a PEG tube and reached out to many who helped me along the way.
My heart goes out to you also. Be sure you have a network of friends and family to help YOU cope.
Nancy

Laura Lynn

sweetblood22 said:

Laura Lynn
Just so you know, I had a peg tube, and was getting enough calories, and tons of fluids, but because of the stress on my body, it just was not enough. I took in 2400 cals a day between the Nutren, and yogurt, baby food, and prune juice, (in efforts to boost my potassium intake) as well as water, Gatorade, and I still had low potassium, and I still needed fluids by about the third week, once a week the rest of the time.

I realize that you may be frustrated, but I just want you to know that these things can happen, even if she was doing "everything right". Just keep doctors in the loop, and tell them everything. Does she have a peg tube? Does she have magic mouthwash and adequate pain meds? Trust me, you might not eat either if you were experiencing them burning you with radiation. Sometime when you are so very ill, it's hard to do for yourself. I did not have a caregiver, and believe you me, I'm not even sure how the heck I lived. I'm sure this is very difficult and overwhelming for you, as well as your mom. Try and be patient.

The Magic Mineral Broth can be found here:

HOW TO START EATING AGAIN.  Lots of soft food ideas and links to many recipes.

There is a link in there for the recipe, as well as other broths and recipes that may be easier for your mom to swallow. People were trying to feed me stuff with a very high degree of chewing, and stuff that burned my tongue, and then wondered why I didn't eat it.

Also, here is the link to the Superthread and there is a lot of info in there that can help you. Products to help with side effects and nutrition.

HNC  SUPERTHREAD

Wishing you and your mom only the best.

Thank you
She is doing better...yes she has a PEG- she also has high blood pressure and Asthma which are preexisting health issues. I know I need to be patient, just afraid that I will lose her. VERY AFRAID OF THAT. I am an only child. Thank you for sharing what you did, at least I know its "normal". How old were you when you were diagnosed? Thank you again.

Laura Lynn

nwasen said:

giving up
I am sorry to hear of your mom's not wanting to fight this. I have read what all the others have written and I really agree with all and think maybe if she got on the boards it would help her to see that she is not alone.
Alot of us have overcome the odds and are beating the beast. I was stage 4 and am doing remarkably well. I took anti depressants while in treatment along with anti anxiety drugs also. I had a PEG tube and reached out to many who helped me along the way.
My heart goes out to you also. Be sure you have a network of friends and family to help YOU cope.
Nancy

You are an inspiration.
You are an inspiration. Thank you so much. She is Stage 4 HPV+ also. She sounded better yesterday so that is an improvement. I love her so much. Just want her to be ok.

George_Baltimore

Giving up or denial or both
God bless your Mom! I was 55 back in 2004 when I was pretty much in the same position as your mother. I still remember vividly after my 11th radiation treatment thinking to myself I just can't handle any more. I was so very close to calling the whole thing off and telling them to just let me die in peace. I was hardheaded and resisted having a peg tube put in. My condition had run down so much that the day after I consented to the tube placement, I was hospitalized for a week. That stopped my treatments and allowed me a little breather. If she doesn't have a tube in, somehow talk her into it. At this point she is probably too weak to resist much. Once she gets the proper nutrition and hydration, it might turn her thinking around. Good luck.

stevenl

Laura Lynn said:

You are an inspiration.
You are an inspiration. Thank you so much. She is Stage 4 HPV+ also. She sounded better yesterday so that is an improvement. I love her so much. Just want her to be ok.

Depression
Laura,
Shortly after treatment, I went to the doc and just cried. I flat did
not know what was wrong with me. I have always been strong, afraid of
nothing kind of man. It took a great deal of persuasion from my wife.
He prescribed an anti depressant which I still take almost 2 yrs.
after treatment. So get your team of docs on it and maybe you can get
her going in the right direction.

All the best,
Steve

robinleigh

Laura Lynn said:

You are an inspiration.
You are an inspiration. Thank you so much. She is Stage 4 HPV+ also. She sounded better yesterday so that is an improvement. I love her so much. Just want her to be ok.

glad
So glad your mom sounded better. It's a roller coaster ride and naturally there will be ups and downs. If you guys need to start using her PEG tube, don't hesitate. It takes lots of calories and protein to heal. As long as she is sipping liquids throughout the rough patches she won't lose her swallowing ability. There was a time that it was sooo difficult for Andy to swallow that all medications had to be liquid or crushed. But, that time passes and gradually the various consistencies of food can be introduced. Hang tough!
Robin

sweetblood22

Laura Lynn said:

Thank you
She is doing better...yes she has a PEG- she also has high blood pressure and Asthma which are preexisting health issues. I know I need to be patient, just afraid that I will lose her. VERY AFRAID OF THAT. I am an only child. Thank you for sharing what you did, at least I know its "normal". How old were you when you were diagnosed? Thank you again.

Laura Lynn
I am sure you are really scared! I had just turned 41 when I was diagnosed. Just


If she has a peg, just make sure she is getting in the require amount of calories and water per day. My nutritionist and Radiologist Oncologist, had me on 2200-2400 calories a day. You should keep track and write down calories and water intake, to make sure that it's happening. I used to take out my required cans and jugs of water, and set them up for a couple days, in daily baskets containers. This way, I knew what I had to get it me. I was kind of very sick, and out of it, so it helped me keep track and make sure I was getting in what I needed. Also, every time I got up to use the rest room, I did mouth care. Numbing "brushing" and rinsing with the baking soda rinse.

Pam M

Hang in There
Hope your mom's improved attitude keeps up.