Well I'm getting concerned about this one. When she was discharged from the hospital mom was 118 pounds, which isn't that bad considering 7 months inpatient and was 140 when originally admitted.
Since she's been home (it's been about 20 days), she's been down to 106 pounds at the dr's appointment last week and 104 today. She is supposed to have chemo next week and doesn't eat at all. She rarely gets in enough calories (I doubt even 130 to 300 calories per day and if she's good, she'll down half a glass of water). I have to beg her to drink gatorade just to stay going and even then i'm lucky if it's 4 ounces she drinks. The most water she gets is from me giving her the crushed dilaudid pain medication in her J-tube.
She doesn't want tube feedings so I'm at a loss at what to do. Some days she eats, but still not enough. Should I be doing something else? She does not want TPN or pumps for enternal feeding so I'm stumped and frustrated. I can forsee her going to 100 pounds this week and if chemo goes forward next week...going under 100 pounds. Nobody seems concerned though which confuses me...I've mentioned this to the new primary care physician, home care nurse and gyn. oncologist.
Does anyone have ideas on how to get her calories increased? Is there something to stimulate appetite over the counter?
Why does she need a feeding tube?? My father (suffered a stroke and lost his speaking ability) kept pulling his out and finally we let him and started feeding him by mouth...He was thrilled and ate really well. Perhaps your mom is ready to eat by mouth.
no, the only reason she has the feeding tube is because she was on TPN (intravenous feeding) for 7 months because she couldn't eat....it was the only way they would release her from the hospital. Even eating now she throws up alot and doesn't have an appetite. Eating by mouth alone, she is not getting enough calories or nutrition in my opinion. :(
Hi Alan. Is there a professional at the hospital, a nuitritionist or dietician who could help your Mom with this? Are there any meds that would help with the nausea? There are products like boost or ensure, and soft foods like pudding, ice-cream and milk shakes. Start very small and take note of what she can hold down. Watered down juices might be easier to take just to change the flavors some. You have probably tried some of these things. I hope you find something that works.
A product that we use at work to provide high calories in low volume is called Calogen made by Nutricia - I'm not sure if the name is the same in the US, I'm in the UK. We usually give 30ml three times daily, which is about 500 calories, It isn't particularly unpleasant to taste, comes in several flavours, banana, strawberry, butterscotch, it's fat based so a bit thick and very slightly greasy but can be mixed with other drinks or puddings. It does give a boost to calorie intake and we find that after a couple of weeks a lot of patient's appitite does increase. It may be worth looking into.
How much Dilaudid is she on? Is she pretty medicated? She may not want the feeding tube because of the TPN months. It's not pleasant but if you can talk her into it, it is so much better than throwing up. It is so imp. to keep her hydrated too. Do a little bit at a time and if she is on edge back off a bit but stay with it.
There are a lot of tricks here to keep her above 100 lbs. Will she eat a plain baked potato? If so, load in real butter big time and mix it up real good. Ensure is good too. High calorie pudding for dessert is great and have you ever heard of Juice Plus vitamins? Their good for cancer patients who need to boost their immune system.
As caregivers we have to understand that our loved ones must make decisions and we can only offer encouragement. You may want to refer to the feeding tube as a "stomach peg" b/c that's all it is. It takes no time to insert one and it's so easy to use.
Also, doctors, nurses, home health care, they can drive you insane sometimes b/c it's like "do they not get it!" I think many of them have a shield that they've built and they do what they can but they don't have a lot of answers. You're doing so awesome b/c you're searching for your Mom and yourself. I have a caregiver section on my website that I'd love to talk further with you on. I am enclosing the website.
Hi Alan... If your Mum will eat icecream or drink milkshakes, then that is nourishing, and also will give her some extra weight. These are easy to get down, and most people enjoy them.You can make the milkshakes different flavours, so she can have something that she likes. I hope something will work out for her, as it's not good to be losing too much weight. Best wishes..Helmar..
thanks for the tips everyone! On a different but similar note I'm so happy we finally got insurance (medicare advantage plan) April 1st...since then it's been so different compared to the hospital...they actually care! The home care nurses are good and we have all sorts of referrals to get things looked at...we feel more included than before!
I did find a shake at GNC called XXX MASS and it has 990 calories per serving but only 27 grams of sugar plus has amino acids and such. It's kinda tough for her to get it down (she's going in for a live x-ray thing to see how she swallows) but might add ice cream to it to add even more calories.
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