dad is doing horrible. we are trying to force feed this liquid shake stuff the dr. gave us down his throat. we force him to drink other fluids as well to try to keep him hydrated. He's anemic now and consistantly losing weight. lost 5 lbs this week making a total of 35 so far. how long will it take for my dad to begin to get better? 2 months? 4months? 6 months? I am feeling like I may need to hire some help to get through this. Right now he needs attention 24 hours a day just to encourage him to drink. the peg is not an option right now so this is our only way of nutrition. if we don't force him to keep drinking he will just sleep his life away. do any of you have any suggestions for me on ideas to help my dad put weight on or at least quit losing? at what point do the bad things begin to taper off? it seems like it's just going on forever! I can't see an end to it all right now just an uphill battle.
I didn't have a PEG and lost over 60 lbs. It will be a couple on months before he heals enough to start eating soft foods. I used a lot of "breakthrough" pain meds, like morphine before I would eat or drink and I also used "pink magic" swish and spit to numb the throat and sores. I also took in as many calories as I could in a short feeding time because I slept a lot too in the early post Tx.
This was the most difficult time for most of us.
It took Charlie a good 3 months before he started to feel better. Like your father he slept most of the time- but thier body needs to heal. What his oncologist said really was truthful "I put you into Hell and now its time to get out". Is your father in alot of pain? Does it hurt when he swallows? What is he drinking? I found that Carnation Instant Breakfast with whole milk were alot better with Charlie than Ensure and Boost. If he requires so much help- getting a aide isnt a bad idea because you need to rest from this too.
As a caregivers I know that I wanted Charlie to feel better so I would stop being so scared. His pain, weight loss(35lbs also), and sleep scared me and I felt alone because there was nothing that I could do to make him get better sooner. Please remember that me and everyone else on this site will be here for you.
Gulia,
It is very scary to watch someone you love struggling as your father is. Healing requires a lot of rest, so he's probably doing what he needs right now.
Gary mentioned the "pink magic" rinse. There is another that the nurses called, "red, white and blue"--the label colors, that my husband found to be very soothing. These rinses give temporary relief so that your dad could more easily swallow the liquid nutrients. Try whatever works--Delia suggested Instant Breakfast. We also made smoothies in the blender from yogurt, bland fruit like bananas, and protein powder.
Healing IS an uphill battle that seems like it has no end. It's a hard battle and you are helping your dad to fight. It may be several months before he regains much ground. Definitely hire some help if you can and keep coming back to this forum. You will find lots of support here and always good ideas from those who are a little further in their journeys.
I'll be thinking of you,
Charlotte
My husband's last radiation treatment was 05/18/2006. About two weeks after that he hit rock bottom. He lost about 50 pounds through the whole ordeal (no PEG). On the brighter side - right this minute he is grilling steaks for dinner. And - though it may take him longer than normal to eat it, there won't be much left when he's done. The bottom line - each person recovers differently. He went through 35 rad treatments and three chemos (cisplatin), but no surgery. Have hope - it will get better, it just takes time.
Sorry to be "the Grump" here, but if you are truely having to force feed your Dad, what hell for both of you! There has got to be a better solution. Amy
yes Amy we do have to force feed him. I feel like we have been left on a deserted island. It is amazing to me how the Dr.'s just have a blank look on there face when they give me the orders on how to keep my dad alive. It's like it's no big deal. It's a huge deal to me and I have lost 10 lbs myself since this whole thing began last March. It is very hard to watch my dad suffer and to feel helpless. Maybe this is rock bottom for dad and things will get better soon. I wish he could have the peg tube and then he could sleep and eat while healing but for now this is it. We just keep on encouraging him and trying to get him to stop losing weight and to begin the healing.
Hi Gulia,
My husband finished treatment 5/1/06 and has lost 50 pounds. He did not want a feeding tube, so the doctor ordered TPN delivered through his Mediport. They took the Mediport out and now deliver the TPN through a PICC line. After 11 weeks on TPN, he is beginning to drink 1 Boost per day. His goal is to gradually work up to 6/day and get off the TPN. The TPN has kept him alive until he could begin taking something by mouth. We switch the bag once each day and he carries the bag and pump around in a portable bag. Home health nurses come once a week to get labs and I change the bag daily. If your Dad can't have a feeding tube, is he a candidate for TPN?
Why no Peg? His choice or Dr?
Jenn
What is the major issue with your Dad? Is it nausea, mucositis (mouth sores), inability to swallow (dysphagia), or....???? Each of these individual issues can be addressed and remedied.
For what it's worth, I am 7 weeks post radiation and am still struggling with nutrition. I've been living on Ensure and some weight gain stuff I got at the health food store for over two months now. I had to have someone drive me daily for IV hydration for about 3 weeks (at the end of and immediately following radiation).
Today has been especially difficult. So far, I've thrown up 3x this morning and am trying to get down one can of Ensure this afternoon. You will feel worse if you don't get hydration and some nutrition.
Despite all this, my weight loss to date is under 28 lbs., and I did not have a PEG tube. I don't know what to say except that others here have been down this road and report that it does get better. That's my hope and inspiration.
Riley
dad can't have the peg because of swelling in his airway passage and they feel it will close up with surgery and he would die. So for now we don't have that option. His main issues are just no appetite and his attitude is not good. He's tired if being in pain and confused because of the lack of nutrition and liquid so it's very hard to rationalize with him. I am happy to report that he's doing a little better. He lost only 2 lbs. last week and he's trying to eat a little more. He's got a little more energy too so I think we are on the right track. He is trying and that's all I can ask of him.
Guila,
A PEG is inserted through a little hole that is punched in your stomach...it has nothing to do with the airway passage. At your dad's stage I was totally dependent on my PEG for nutrition and hydration. Also, please note that the first few weeks post-radiation are the hardest part of the entire treatment and recovery. Many people feel very bad and get depressed.
I suggest discussing a PEG with the doctor.
Best of luck,
Danny G.
Guila, if the Docs refuse to figure out a way to feed him by peg or pic or whatever, then ask about Megace. It is an appetite stimulator that is used for cancer patients, Aids patients,etc. You can read about it on the internet. It is very expensive but supposed to work well. It was offered to us, but we did not try it because John was at the max. volumn of what he could tolerate in a day. Also, we are using a NUTRITION product called 2CaL-HN. It has 475 calories per can and John takes 4 cans a day [by peg].It can be pump fed and it can be swallowed if the patient can swallow. That's 1900 cal. in just 4 feedings. Add some Welches Concord grape juice or gatoraid and you can boost the calorie intake to 2000+.Keep fighting for you Dad. Amy
Hi Gulia -
I am in a situation very similar to yours. My father also lost 35lbs and could not afford to lose more (he was 6 feet tall and 170 before treatment). He and his doctors were against the feeding tube for multiple reasons.
He has been drinking Scandishakes -- they have twice the calories of Boost and Ensure for the same volume of liquid. They need to be ordered through a pharmacy or purchased online. Here is a link for more information:
http://www.axcan.com/scandishake_us.php?lang=1 Good luck. Hang in there. You are doing such an important job.
Bee