Help: My sister and I feel like we've reached a dead end

• By beckylynn
• Posted June 4, 2009 at 6:32 am
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Gerl I know what you mean. My mom would hardly eat and I'd beg her to eat. Have you tried juicing for your mom. Sometimes making it in drink form is a little more tolerable than 'eating food' put some good protien powder in the juice and let her sip on that.

Get some coconut juice that's really good for her too.
I found some at our local health food store.

Is she taking any kind of anti depressant like zoloft or something similiar that can help keep her from getting into a depression. Of course it's another pill which I know they hate having to take.

It's ok to break. Away from your mom of course and then put the big gerl panties on and go back to dealing with it. You're doing great.

Becky :)

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• By bestrong
• Posted June 4, 2009 at 8:44 am
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I am sorry to hear what you are going through. It sounds similar to what we went through with my mom when she was told her cancer had come back and was in her brain (this was after about 9 months NED/remission). I remember telling my best friend how my mom was acting---she was very weepy, emotional, nostalgic aout her childhood. My friend's words were: "She is grieving her life right now." And I realized I had to let her handle her grief, fear, anger in her own way, just as I had my own way to deal with it. It sounds like you have figured that out as well. It's just so hard to watch them slip away.

A couple of suggstions would be to talk to her doctor about an anti-depressant (Zoloft) and/or anti-anxiety (Ativan, I think). I don't believe medication is the only answer, but it can certainly help to take the edge off the anxiety.

Another suggestion is to talk to a local wellness center/cancer support group. It can benefit your mom if she is willing to talk with someone, but it can also help you tremendously. I remember one bit of advice I received from a social worker was to try to engage my mom by going through old photo albums or letting her talk about her past. Although we didn't do this, I will tell you one of the best memories I have from the very difficult time of mom's illness was when I spent the day with her watching re-runs of one of our favorite TV shows from my childhood--Little House on the Prairie. There was no talk of cancer, chemo, radiation....just time well spent relaxing together. I know we both cherished that day. I hope you will be able to find some time to just be with your mom and listem if she wants to talk. So often we want to give answers, be proactive and feel like we're doing something to help...and really what the patient needs is our loving presence. This is the one gift you can give your mom, and you will be forever grateful that you did.

I wish I had more answers for you because I know how helpless you feel. You are a devoted daughter doing the best you can. Remember that. I wish you the best and I will keep you and your mom in my prayers. I will pray for her emotional health and that she finds the will to live the best she can.

Take care,
Tracy

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• By emtq
• Posted June 4, 2009 at 11:02 am
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I hope that you and your sister will speak to your Mom's doctor about what is going on. When I was in active treatment, I learned that there was a plethora of support in the community where I lived. Check that out and the doctor would be a good one to point you in the right direction for those resources as well. If your Mom is receiving treatment at a cancer center, chances are the center has support programs in place that one may take advantage of as well and many of the them are free of charge. Continue to spend the good quality time with your Mom. You will both benefit from that time and as a cancer patient myself, I can't tell you how important it is to me that my family and/or friends just spend time with me.

Good luck to you all. You will be in my prayers.

emtq

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• By mevsm
• Posted June 4, 2009 at 11:27 am
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Hereformom,

Quoting here:
"Loss of appetite is a frequent problem that calls for negotiation. Eating may cause discomfort to the patient, but the patient's refusal to eat causes discomfort to the family. "If he'd only eat, he'd feel better," is their lament. Food wars are common in which the family hounds the patient night & day to "eat a little something." It's the caregiver's job to gently point out that comfort is our goal, and for the patient, not eating is comfort. Frequently I'll say, "At this point, food is an extra burden to the body."

The ?'s you have, plus Tracy's experiences, are addressed in 'Midwife for Souls, Help for the Sick and Dying', a book written by a certified hospice & palliative nurse with 20 yrs. experience. It is a guide for all who live with the terminally ill and hospice care workers. This book compares natural childbirth with the process of birthing into eternal life. "From beginning to end, the physical, psychological, & spiritual similarities are striking."... Is a "how to" and provides Practical,
Credible,
Insightful help.
Questions are being answered that I already have now & some not thought of yet. It also provides a window into the patient's mind.

..."The goal of midwifery in childbirth is a healthy mother, a safe birth for mother & child, & a healthy baby. In midwifery for souls, the goal is a healthy body, a peaceful passage, & a triumphant soul. The family's active involvement & loving presence greatly assist in the achievement of these goals."

One can find the book on the internet & it was written by Kathy Kalina.

My strong willed mom lives with us and we have had weight and eating challenges too. A friend of ours, who has stage 4 angiosarcoma, is also dealing with lack of appetite. Mixing nutrition in home made blender shakes is helpful and there is also a pre-made product we have used, called 'The Feast'. It is a powdered organic fruit & vegetable drink one can find online.

Natural vitamin D from the sun may help, plus a supplement., and cod liver oil capsules.

Best regards from the sunshine state,
Mary

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• By hereformom
• Posted June 4, 2009 at 5:54 pm
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Thank you, everyone, for your support. Talking about the situation is helping me feel stronger and more optimistic again.

beckylynn: My dad has been making my mom fresh veggie/fruit juices for quite a while now. Perhaps we should start "sneaking in" some protein powder to boost the juice to give a little more "meat" to them? I really appreciate your comment about taking a break... I always feel guilty whenever I'm not with her but I'm realizing I've got to stop the guilt as it's not doing either of us any good.

bestrong and emtg: It was comforting to read about your experience w/ your own mom. It helps to know that we're not alone and that this is even "normal". I have considered suggesting that my mom try taking an anti-depressant but I know that she would immediately refuse. She already struggles to take the one pain med pill and several vitamins/supplements she has agreed to take.

My sister has done a really wonderful job drawing on a lot of the resources in the community. She's made good connections with my mom's oncologist, her cancer nurse, a home care nurse, the cancer agency's "Pain Team", and the cancer agency's counsellor. We've also worked together to pull in the support of a holistic cancer care centre in our community. Unfortunately, my mom picks and chooses which of these resources she thinks is helpful so she doesn't make the most of some of them (e.g. the counsellor). Nonetheless, these resources have helped to give us, my mom's support system, some comfort and reassurance.

Since I posted last night, my sister and I have made a short term plan to firmly offer to take my mom out for short outings doing some of the things she used to do - if she makes excuses for not going, we will firmly insist she must, for her emotional health. Happily, my mom has agreed to all of the outings so we won't have to fight her to get her out of the house.

mevsm: That's a very interesting way of approaching this situation. I must admit that I'm not ready to try this approach w/ my mom yet... I couldn't bear to let her continue not eating when she is still showing some fight to live. However, when the day comes when she has made the decision to let go, this approach could help make her last days more comfortable.

Vit D and fish oil: yes, she is taking those already! : )

Thank you, again, everyone, for your kind replies.

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• By Mydaddy
• Posted June 4, 2009 at 7:25 pm
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Hi hereformom,

Wow your story sounds so familiar my dad is going through NSCLC stage IIIB and he is now taking a break from chemo/radiation because it has just taken a toll on him, his body, and his mind. It is so hard to try and be there for your parent that is going through this, I live in another state than my parents so it makes it really tough and I feel guilty not being there as much as I can. He lives in KY and I am in AZ so it is pretty far. We have also tried to encourage him to eat and we have tried leaving him alone also but when you leave him alone he just will not eat. It is such an emotional ride we are on it is the toughest thing my family has ever faced. What does your mom have and what stage is it. I am here if you need to vent....
God Bless and stay strong and just keep encouraging you mom to keep fighting.
Marie

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• By Mydaddy
• Posted June 4, 2009 at 7:30 pm
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Also my mom as been making my dad milk shakes with ice cream, tofu, protein powder & bananas (she does not tell him about the tofu or he would spit it out) Also his doctor gave him "skandi skakes" which have about 600 calories per 8oz. My dad seems to likes both of the shakes and the good thing is they are both high in calories...
Marie

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• By Farmerswife
• Posted June 4, 2009 at 8:13 pm
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Hi--It sounds like such a painful time for the whole family! I have had two close relatives slip and then pass away due to cancer--one my dad with lung cancer and the other my sis-in-law with spinal cord and brain tumors. She was in her 50's, my dad in his early 80's. Both were ambivalent about living on. My dad was never really able to talk about his death and essentially his denial kept him out of hospice care. My sis-in-law had in home hospice and boy, we did it right! We talked about her early & mid life and the present. About dying. We wrote her obituary together. The openess was a godsend for me, but I thought her husband, who took great care of her, was fearful of the open discussion--to painful for him.

So I guess what I am saying is people are different, but it might be useful to talk openly about how she views the last chapter of her life and what she wants. If you can get help with that from a hospice counselor or other trained professional it might be easier.

I guess I just know I don't want to spend my last chapter quarreling with my loved ones. If only you could be daughters, not burdened by pushing her as much and more blessed by being companions to her.

A painful communication barrier this awful disease.

Best wishes, Susan

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• By blujonny
• Posted June 4, 2009 at 8:23 pm
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Hereformom, I was really inspired by the following person's story in regard to mesothelioma. He has been on the news lately because he has been betting at the local betting shop with money that he would outlive expectations and has been winning so far. He was only given 2 months but has lived more than 2 years. Obviously there are stories like that frequently on here. But he claims that his longevity is due to certain pills he took from an Indian homeopathic doctor that he went to as a desperate recommendation from a friend. I just thought it might give you another avenue of hope. The doctor's website is also linked on his website. You do have to send an email request from his website to get his full treatment story but I thought it was worth it.

jm21.co.uk/

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• By hereformom
• Posted June 6, 2009 at 6:20 pm
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mydaddy and farmerswife: Thanks so much for sharing your personal stories. It really does bring comfort to me to read about others who are in the same boat.

mydaddy: I'm so sorry to hear that you live so far from your father. I know how painful that must be for you. You should definitely NOT feel guilty. Here I am, just a 10 minute drive away from my mom. It really sounds like shakes are the way to go so maybe I can make that my little excuse to see my mom more often... stop by to make her some shakes whenever I get a chance (I like the tofu idea... good source of protein).

farmerswife: Yes, at some point, we will all just have to let go and just be my mom's companions. I'm not ready to let go just yet... I still see the potential for her to fight and beat the cancer for another round, and enough motivation from her to try it. Until that round is definitely done and over, I'm going to keep gently pushing her. For now, I'm going to take your advice and get the counsellor to help my mom focus her discussions during their sessions on addressing the future.

blujonny: thanks for sharing that. I'll add it to the list of alternative therapies we've got on the back burner, whenever my mom's ready for them.

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• By hereformom
• Posted June 6, 2009 at 6:29 pm
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An update:

Happily, my mom's stuck to the two outings I've offered her so far so she's not stuck at home all day long. She's gone back to eating a little less and refusing to take a bite more than she wants to... but I'm hoping that's just because the weather's been uncomfortably hot.

She will be starting her first round of Alimta this coming week. My mom had a really rough time on the Gemcitabine and Cisplatin (spelling?) so she's extremely turned off of all chemos. The whole family has told her that we all completely support whatever decision she wishes - to go ahead w/ the chemo or to decline the chemo and pursue alternative therapies or even just to let the cancer take its course and get good hospice care.

My mom decided to go w/ the Alimta - perhaps a decision made more for us than for herself... but we don't know for sure. My sister and I both agree that however her body takes the Alimta will be the final deciding factor for our mom. If she takes it well, she'll get a renewed motivation to fight. If it proves to be really hard on her, she's going to give up the fight.

I'm wishing really hard that she takes it well. I can't bear to see her knocked down hard by the chemo then decline from there, living the last days of her life in discomfort and unhappy.

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• By MariasFriend
• Posted June 7, 2009 at 9:33 pm
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To MyDaddy,
PLEASE have your mom eliminate the ice cream. (Sugar feeds cancer). Use 1/2 banana and lowfat PLAIN yogurt instead of ice cream and mix w/ various fruits and vegetables.

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• By MariasFriend
• Posted June 7, 2009 at 9:40 pm
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Dear Hereformom,
shakes are a good idea. Please do not use ice cream or anything w/ sugars. Use banana and plain yogurt instead of ice cream, and add blue and all berries, oranges, any fruits, carrots, brocoli, cabbage and powdered greens (from health store) and if you don't use tofu, you can also use whey isolate (no sugar) which is all protein. You should also add flax oil, and can drop in vitamins, thereby getting all nutrition in one drink.

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• By loni319
• Posted June 7, 2009 at 9:48 pm
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I have to agree with Beckylynn, she has some great advice. Milk shakes are good too they are nutrious to a degree and really easy to tolerate (stomach wise). You are doing all the right things and they are no right or wrong answers I have learned. Even minute of the day I second guessed what I was doing with my mom. The biggest thing I learned was don't force anything, if she wants something get it but if she doesn't don't worry. I spent so much time worrying about these things I let precious quality time slip by, so after all my rambling I guess my point is to enjoy every single second you have with her. And zoloft is a good idea if she will take and i found that adivan also works well. I will keep you all in my prayers

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• By june_b
• Posted June 21, 2009 at 5:53 pm
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Gotta say something about the whole "sugar feeds cancer" myth. Cancer is comprised of growing cells, just as the body is. What feeds the body feeds cancer, so even if you eliminate sugar, the cancer will still grow. If you are fighting the battle of nutrition, you need to make every mouthful count. Add protein to everything, using either soy whey or eggs or both. To hell with calorie counting - use heavy cream instead of milk, and full-fat yogurt. Biggest thing is to feed the person what they want to eat. It doesn't do any good if they won't eat it! Also, several small meals is easier on a patient with breathing issues that a big meal. Try snacking every hour instead. And consider getting Boost or Ensure or Pulmocare, which provide all the nutrients you need.

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• By june_b
• Posted June 25, 2009 at 3:59 pm
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PET scans work because ALL cells uptake sugars. That's why they make you be as calm and quiet as possible while getting the scan. They want to make sure that the greatest uptake is from the most active cells, which would be cancer and infection. Those cells have a metablolism greater than normal, which is also why most chemotherapy works as it does - it is designed to taget the most active cells, but since all cells are somewhat active, you get collateral damage particularly in the digestive tract and the hair, where cells turn over at a fast rate.
I'm not saying go nuts with sugar, and I definitely think one should avoid the more artificial sugars like high-fructose corn syrup. Honey, maple syrup, and organic cane are good though. Cells require glucose, which is why they give dextrose and water in IVs in the hospital. The liver converts other nutrients to glucose for use in the body. We need ALL the various nutrients for optimum health, and we especially need calories when we are sick and our internal "furnace" is burning high!

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