Need Advice: Food out of control while caring for Mom with terminal cancer

Hi all,

I've been lurking around but not posting for some time now. End of July, my mom was diagnosed with metastatic pancreatic cancer, Stave IV. One of those "not found until tumor was so big it couldn't hide anymore" type of situations. And it's spread to liver and possibly lungs. I have gained 20 lbs in that short time. I'm not making excuses, I totally know what I did. I'm not surprised either.

I'm seeking ideas from people who've successfully navigated this type of situation and not gain back all their weight. Or have been able to reign it in before it gets too bad. I will be with her for the next 4-5 months until this plays out. She is at home now and luckily her home is conducive to home care and any medical changes needed to stay here as long as possible. That's not a concern. People want to help, too.

I live 4 hours from her and have basically dropped my life to be with her (my husband is so amazing). So I'm out of my very tidy home comfort zone, in a situation dealing with pain management every 4 hrs, short sleep cycles, and in a house filled with high calorie foods because loss of appetite is a biggie with this disease so we give her anything she craves just to get calories in. Of course we attempt somewhat healthy foods first (meat, cheese, yogurt, potatoes, granola, milk, anything) but also give her anything she craves because as her oncologist said, "if she wants chocolate, give her chocolate. Anything to get food/calories into her".

I find myself doing well during the day because I'm busy with chores, managing the medical end of keeing records, diaries, med distribution, cooking, cleaning, etc. But I'm now eating at night. This was never a problem for me even when SMO. But now, it's the time i eat way too much of the wrong things. And basically its eating without emotion. I don't think i even taste the stuff.

I'm just getting back into walking outside because smoke was so bad from the BC forest fires that the Air quality index hovered above healthy limits for weeks.

I'm just trying to gain control of my own scenario while dealing with watching a situation I have absolutely no control over, watching someone in pain who's health was amazing before (the strong, healthy one who always drove her sick friends to their appts) shrink and change in just a month or two. Cajoling her into eating and drinking, caretaking, all that stuff. I don't mind the caregiver role at all. No resent and no regrets. Happy to help even in the days of severe pain, med adjustments, getting sick, etc. Just trying to figure out how not to mindlessly soothe myself back to 285 lbs by Christmas. Already had to buy bigger clothes and that was a kick in the 'nads if you know what I mean.

Any advice?

Thanks,

Nexxie

Hey there. I'm so sorry that you're going through this.

Recently Kamac made a post in the main forum asking a similar question, so reading the replies there might be helpful -- http://www.obesityhelp.com/forums/amos/6036177/How-to-you-st ay-on-track-during-times-of-stress-and-grief/

Backstory: My dad was diagnosed with merkel cell carcinoma about the same time I started looking into WLS. His first chemo appointment was the day after I met my surgeon for the first time in December 2013. I live about 3 hours away my parents and spent every third week with them to take my dad to chemo and help out. I had to miss his last week for that first round due to my WLS. Then I was up with my parents for every major oncology appointment. Then there was travel for radiation. Then the cancer metastasized to his brain and there were more trips for the neurosurgeon, radiology, and brain surgery all at the beginning of 2015. More radiation, more chemo, more appointments... you get the point. He died in April 2016 - two years after my WLS. And after his death it was more time with my mom to help her get her life sorted out, her house ready for sale, and her moved to the CCRC she'd chosen. I've never tallied up the time I spent in PA during those 2-3 years, but it was substantial.

Most of the time I could go up during the week and come home on the weekends.
But that still put me in a car for 6 hours a week and eating in the car was my "thing." Not a problem when I was only going up once a month or every other month to visit... definitely a problem when it was weekly. (I also went back to college as a full time student in September 2015.)

In 2014 I lost 124.4 lb. In 2015 I lost 14.3. In 2016 I lost 8.4. Then, in 2017, I lost 22 (w00t)! I pretty much stalled between my dad's brain metastasis and his death and I gained a bit after he died. I was diagnosed with Binge Eating Disorder, something I'm fairly sure, in retrospect, I had pre-op, but had been quelled with surgery until all of the cancer stuff.

So that's my story.

My advice? Be kind to yourself and do the best you can.

I kept seeing my therapist as often as I could, and that was very helpful. I also think that seeing a therapist since I started the pre-op process for WLS gave me a lot of coping skills I hadn't had, so that helped me to weather my dad's cancer and death. I don't think I would have managed as well without that.

I tried to accept help from people who offered, although I sucked at that. I tried to remind myself that people did want to help and I'd be doing them a kindness by letting them, since they probably felt helpless too. If I had to do this over again, I know there are websites, or even just a google doc, that I could have used to set up a "these are things that would be helpful, can you 'sign up' for the thing you can do?" list for people. But.. I think that would have used more energy than I really had. I loved when people offered specific things instead of just "let me know what I can do to help!" The friend who offered to bring my mom and I lunch during one hospital admission, for example, that was awesome.

I tried to keep exercising. I got a guest pass at my parents' gym and tried to get to a fitness class or two each week. I always took my running clothes. I ended up getting a yoga mat to leave there. Sometimes I was successful, sometimes I wasn't, but I tried.

I got my mom to switch from her morning soy milk to almond milk, so I always had almond milk for my morning breakfast protein shake. I'd make up protein shake packets at home to take with me. I'd set up my vitamins before I left. So I was at least getting in good protein at breakfast and my vites.

Part of my responsibilities were cooking dinner, so I always planned a protein forward meal that would work with my way of eating. Although sometimes dad would have a weird request, so I'd make whatever weird thing he wanted. (The one regret I have is that I wish I'd given him more ice cream. But it's probably a good thing I didn't for MY health, because if he'd had more ice cream, I also would have had more ice cream!)

I tried to make sure there were always easy protein options in the fridge - cheese sticks, lunch meat, that sort of thing. I tried to choose those when I was hungry.
I always had a Quest bar, or two, in my bag when we went into the city for appointments, so I knew I always had a good option for myself.

There was a lot of "trying" during this time period. Sometimes I succeeded, sometimes I didn't. I tried to be kind to myself and I tried not to beat myself up. Beating myself up tends to lead to less success, not more, so I tried to keep away from those counterproductive tendencies.

It's hard. It sucks. It's really hard to be a caregiver for someone else AND take care of yourself at the same time. Let people help you when they can. Utilize respite care services if they're available. Contact your local hospice if you haven't already. If she doesn't qualify for hospice at this point, ask about palliative care and caregiver services.

Hang in there.

I?ll let more experienced people chime in. Just want to say that your mom is lucky to have you. Please don't forget to take care of yourself. You gotta get the oxygen mask on yourself first, if you want to take care of her.

Bless your heart, sweetie. You have been offered such a heavy burden, and oh, my- What incredible courage and love you are freely giving in taking on such a physical and emotional task. You honor your mother by your actions.

The strength required must be tremendous. No wonder you are seeking "soothing through food". I'm going to gently remind you of this: "If the problem is not hunger, food won't fix it".

and, where is Your support? Who is there to sustain and keep you through all this? (Practically as well as emotionally) Please find some one-group-health care-spiritual assistance. Food is not your friend here.

I recall this and believe it--"When terrible things (my words) happen, look for the helpers, they are always out there." -Mr. Rogers

This is not just your mother's sad experience, it is yours too, and you will need the same quality help as you lovingly help your mother. Reach out.

?If the problem is not hunger, food won?t fix it?.

I love this! I should put it on a post-it inside the cupboard.

Nexxie, I'm so sorry you are facing such a difficult life challenge.

Remember the airplane oxygen mask lesson; if you don't take care of yourself first, you won't be able to help her as effectively. It's awesome that your husband is supportive.

If you cannot get to a counselor, try journaling. There is a free, secure one on line, Penzu. If typing is easier. Write down when you want to eat, how you are feeling. Ask yourself is your thirsty, tired, grieving, angry -- and then really focus down on it.

My best food when I'm anxious is air popped popcorn in a very small quantity. I'll be praying for you!

That is heartbreaking and I'm sorry you are going through this. Despite your stress I think it is a good thing you've identified the issue. Now you know what to do. I feel like often times the answer lies within us. What are we doing wrong? Emotional eating is a thing for many of us. As a caretaker, mother, and nurse, I know sometimes we forget to take care of ourselves, but remember your health needs to be good to continue as well. Not only for your longevity, but for your mental health. I'm sure you'll find your way. Just focus. Rethink your decisions and habits while you are going through this tough time. My thoughts and prayers are with you. You have this!

Thank you, everyone, for the responses.

I do realize I need to care for myself first and I have the best of intentions but do falter a bit there. I will try to keep the oxygen mask analogy in my mind.

There's been some upsetting issues with my brother as well, which adds to the whole thing. We've not gotten along forever, he's been threatened by how close I've been with Mom forever, and has continually b*tched about how hurt, damaged, upset and hated he feels when I disagree with him or try to get him to understand that if he's going to 'help' and spend the day with mom then, no, he cannot leave her alone for hours, especially while we're trying new pain meds and she's in a great deal of pain. I just cannot indulge his victim attitude at this time and the guy is 54 YEARS OLD! (OK, perhaps I shared too much here.)

at any rate, Home care and Palliative services have been engaged and we're waiting for our appointment with the Pain Team at the cancer centre as this has all been so new and fast and apparently lots of people have cancer nowadays so waiting is a part of this. Unfortunately, surgery, chemo and radiation are not possible so we're in the palliative portion of the scenario. But, not at hospice level yet. Pain meds at home and working with getting the right dosages is primary right now.

Thank you to everyone for your suggestions. I will keep on keeping on and try to be gentle with myself. Mom is not yet comfortable showing she's sick/tired/fatigued with anyone but me so tries to be 'on' while they are here. Even when my brother is here, she doesn't fully 'relax' so I'm dealing with the fallout from that when I'm here alone with her. I get the exhausted, fetal-curled remnants. this will change at some point, i know, because she can only keep it up for so long but hard to see and try to 'repair'.

I do have lots of the right foods here (protein powder, cheese, chicken, etc) but it's the other stuff that always seems more appealing.

thanks again, everyone, for your support. It is greatly appreciated.

yes, that "other" stuff is always going to be more appealing because it gives you the dopamine lift that you need bet badly right now. Not faulting you for that.

maybe try making yourself eat some protein food first, before you allow yourself to eat the bad stuff. That wAy there will be less room in your pouch/sleeve.

good luck, this will not last forever.

Now the tough love, give yourself a good talking too because this is not the last time that " life" is going to happen to you. If ppl who are addicted to drugs, alcohol, sex can get through rough times on their lives without turning to their drug of choice, we can leTn to get through our trying times without eating off plan. Good luck and be gentle and firm with your self. So sorry for your coming loss.

Miss Nexxie,

I have read all the comments and are on track... my back story is WLS 23 years ago....almost at goal for 3rd time las majorr gain was while taking care of hubby and parents over 30 months total....almost 5 years ago my Mom went down with a massive stroke, and Dad was already in alzheimers. My Hubby is a jewel, but disabled as well. So roles of wife ,daughter and nurse here as well.

Thank God you have support of your Hubby. and can drop everything and care for Mom. That is what we did as well, but our move was less than a mile, yet we were both out of place . I said that to say this...I know where you are coming from . Is not a pleasant place to be, but necessary to fulfill commitments made to our parents... You can Do this...ie take care of yourself AND your Mom. You just need to be diligent to take care of self. I did not and it has taken me a good 2.5 years to get my iron levels back to normal.

Hospice can pick up care for up to a year as long as diagnosis is terminal. Once under hospice they provide many things including pain relief., diapers, or incontinent care, CNA assist for baths and bath supplies, comfort things, hand sanitizer, gloves for caregivers, oral swabs for mouh care. and nursing and Drs home visits, if required. You need to investigate what is available a little deeper. I think both of you will be better off with this service. I had to put both my parents under hospice the SAME day. My regret is: I should have done it at least 3 months sooner.

You need to tweak your own care just a little. Here are the things I can see in hindsight I should have done. I have one brother and he was wonderfully supportive even tho a OTR driver. I could call him any time and he has never second guessed my decisions. My husband is still disabled, but was able to assist in both my parents care and in supporting me, making sure I got extra naps while he sat duty to make sure all was smooth while i was asleep.

#1 Take a very good probiotic.

probiotics will increase your ability to make needed serotonins. The four hour sleep is an issue that can require longer term recovery -because it throws off your hormones and chemicals produced in the gut. Even 5 hours would make a difference ,if you can get her pain relief that works that long. some medications work in tandem to extend the effectiveness of others... example is tramadol/ultram extends the relief time of other pain meds, like vicodin or morphine. By its self, not much but when combined this effect with other meds can extend even motrin - for me for 12 hours for arthritis pain. Even 1 more hour can make a great deal of difference for your Mom's comfort and your stress and sleep recovery.

#2, get a natural daylight bulb and use i for your sitting and reading, paperwork area....so you get it's benefits at least 45 min a day.- will help with the depression...of seeing your Dear Mom go down and the helpless feeling that may come with it. Grief is a normal part of life and you will go thru each stage of grieving just as your precious Mom will.

Understanding the grieving process will help you be able to fully support her last days of life. look up the stages of dying...no one goes thru the grief process the same, here is no right way , but refusing to accept deah is very painful/life altering for suvivors, especially when death comes quickly/unexpecedly to a Dear One.

#3 Tell your brother to GROW a pair. ie..This not about HIM. THIS IS about MOM. She needs NO more stress and You don't need the drama either. If he can't skip the drama, he needs to do what is best for Mom and call her an tell her he loves her -every day... and not add to any more distress for her. If he can come and talk to her and you in a civil manner then he should be welcomed. He has one Mom . Consider it as, this reaction COULD be his BAD way of handling this loss. Even if he is just a butt, by your giving him the benefit of the doubt, you will know you did all possible to give Mom peaceful enviroment.

#4 Be proactive for yourself as well.Take your supplements.. keep your labs done. pay special attention to getting in your minerals and mineral supports, Iron. B complex is required for high stress. It will help with the cravings too.

I should have doubled my B complex sublingual that has supports for utilizing a natural Iron- dessicated liver-I take. I try to hold under tongue for 2 minues then swallow. reason: gastric juices destroy much of B vitamins that go into stomach/pouch and small bowel.. ALSO:Vitamin K2 ,new research has been done dividiing Vitamin k compounds... K1 is the one that thickens the blood. K2 moves minerals from the vessels and into the bones. Because of this I have added one K2 to my regimine. too late to keep me from loosing my teeth from cracking., but not too late to prevent muscle cramping and other complications of improper magnesium storage...including low blood pressure and low heart rate. Mag citrate and calcium citrate are the most absorbable forms. If low tolerance to oral mag citrate/capsule form, can use an epsom salt foot bath.

#5 The intense stress as you begin the managementt and get settled into a routine will level out for a brief moment. Take advantage of those moments. Take time to take deep breaths. If not able to go outside and breathe fresh air or take a walk to mail box ect... do something for exercse late in evening like isometrics...to continue to build your strength. Everyone else has given up.. question is has your Mom and have you? cancer is fed by sugar. I would try B17, graviola 2x a day, pau de arco, one x/day.( if like hot tea.) both can be put in same cup and is naturally sweet, pleasant and helps nausea, can be drran****d as well. ...low sugar diet. and juicing organic carrots. put in anti-cancer diet in "you tube" search...for more ideas. I have no connection with any there. just some places to search.

#6 Others have said it, ... be KIND to yourself..

. try to get proteins in first, enough carbs to start digestion( begins insulin release) and boost proteins to your highest tolerance. You will gain some from the stress involved but you can get a handle on it by going back to your rules, increasing B complex and reducing cravings. IF you decide to have a late snack. Put out a measured portion ONLY. of a extra and use it with an additional protein.. spoon of peanut butter, peice of cheese...maybe with an herbal tea, my choices are peppeint and camomille for night.

Hope these tips and information is an assistance to you as you go thru this difficul transition.So sorry that anyone has to go thru this horrible illness.