Apologies all around, in my clumsy comments I did not make my thoughts very clear. I've gone back and edited my original comment hoping to clarify. I did not mean that any two situations were the same -- I only meant that in my head I feared a disappointing result if Nikki were to bring DH home. Again, sorry if I stepped on toes, it was not my intention and I know everyones situation is different.
Nikki, my heart goes out to you. You have been Lynn's cheerleader, fight manager, coach, and other half for so long. It took you a long time to place him, and you still haven't adjusted to that. Then to have the eating issue on top of it. You have been given some terrific advice from those here who love you. In the end, you have to do what your heart tells you, in order to live with yourself afterwards. We'll be here for you to lend an ear, a hand, to say a prayer, or to give you advice. Just keep us posted and know that your family here supports you! (((HUGS)))
((Mary)) In the midst of all you are going through... you still think of others. No wonder we all love you ((hugs)) Thank you for thinking of me, your support has always meant a great deal to me. Much love, Nikki
Thank you swarfmaker, but I do have Lynn on the coconut oil and have for some time. It did not help with his weight gain. I saw no imporvement at all actually. Maybe he is too advanced for it to help?
((Mary)) Is that what I keep hanging onto? Wasn't sure where it came from, thanks! ((hugs))
I called the doctor's office this morning. Left a message with both of their receptionists. Both said she would make sure he called me before the end of the day. We will see....*rolling eyes
His PC who has been treating him since the day of placement is a very compassionate man. He didn't get the message I called yesterday and apologized profusely. He said Lynn is dying from AD. But, right now -his body is not shutting down. He shows no signs of "being in the dying process". His only problem, and it is a biggy, is not wanting to eat. That alone does not mean his body is shutting down. He said had it been, he would have passed away by now regardless of my valiant efforts.
At this time he does not feel Lynn needs hospice. He does qualify, but he does not feel they are needed. He feels all of his needs that they could provide are being met by the staff at the NH. He believes a better time to call them in would be if he started to feel pain, or was in the dying process.
He wanted to give the increased dose of remeron a chance to see if it would work. I expressed my frustration that he has been on that drug since Feb and I did not believe and increase of 15mg was going to provide the miracle I am in search of. He was very empathetic and asked, ASKED! what I wanted to try. *yeah I burst in to tears... there went my well rehearsed speech I had prepared...
For those of you who haven't been there, it is just extremely difficult when your loved one no longer wants to eat. When you know in your heart they are not dying right now, but also hold the knowledge that if you don't "force" them to eat, they WILL die... it is so emotional and overwhelming.
The doctor knows Lynn and I well now. He knows he only eats for me, and has watched me coerce, coax, bribe, anything! to get him to eat. I asked him flat out if he thought I was being cruel to "force" him to eat.
He said "if you are thinking about a feeding tube I would adamantly advise against it. But, If you are willing to take the time and devotion to try to get him to eat, no that is not cruel. It is much like feeding a child who doesn't want to eat. You know they have to, so you do what you have to do."
He still also believes despite AD, Lynn does have enough quality of life for me to fight for. He feels I will know when it is time to throw in the gloves. In other words, Follow my heart. (now where have I heard that before *wink)
He agreed to try the megace! He starts on it tonight! *happy tears.
Now, I KNOW I have done my best. Now, I can place him in God's hands.
Nikki, glad your Lynn`s dr. has a compassionate side, you now know you did the right thing for Lynn and like you say put him in God`s hands I also have happy tears for you, be strong my friend, I do hope this will make him eat more. Gail
I know how difficult it is to see a LO not eat....in fact, every meal I feed DW I don't know what to expect, especially when she is more lethargic. When she is more alert, she has in the past not eaten 'cause she thought I was trying to poison her. So I learned to just let her skip a meal, that the next one would be better. She had a feeding tube in a NH once, only to pull it out of her stomach herself. What do you do about that? You just keep trying. And praying. I hope your solution works.
I didn't go in for lunch today. I wanted to see if the medication would help. I was told it could start right away. No great miracle yet, BUT he DID eat a couple of bites all on his own. I know it isn't much but I am so happy I could cry. And smile :)
It wasn't enough to sustain him, so I am headed over now. Thanks for your support, I really REALLY needed it!
Nikki, do you ever make milk shakes for him..with added protein powder, or say, Ensure and Ice Cream mixed together for the nutrients.
When my husband wasn't eating what I call "real food", the nutritionist at the hospital suggested I try this and he loved them. Vanilla and Chocolate were his favorites, and - even though this isn't supposed to be safe, sometimes I'd add an egg to the blender when I was mixing it together. I'd make about 8 ounces at a time and he'd finish it every time. The nutritionist told me that one of these was as nutritious as a plate of food. Milk, sugar, eggs,bananas, strawberries, plus the Ensure product... and, it's so cool to drink. They say that sweet is the last taste they know, and often Nursing Homes feed them dessert first to get their taste buds started, when eating a routine dinner. Have you all tried the "dessert first" trick? I read your posts with interest and understand how frustrating it must be for you.
It is safer to use powdered eggs (you can get them in sporting goods stores) or in some areas you can get "pasterurized" eggs. Look in the dairy case next to the regular eggs. The pasteurized eggs are still raw but they manage to get them heated up just enough to kill the salmonella. However, do NOT try to use them in recipes where you separate the egg whites and beat them -- you can run the mixer on them forever and they still will not fluff up !
Nikki, crossing my fingers that the Megace works and Lynn's appetite picks up.....I never had that problem with my husband...he would eat the table if he could have figured out a way to do it. That is why when he quit eating I knew his days were numbered.
A trick I know of that sometimes works with geriatric patients is to fill the spoon with food and then dip the tip of the spoon into some applesauce....the sweetness is the first thing that they taste and sometimes that will entice them to eat. That goes along with the dessert first business.
I knew it was wrong to use raw eggs, ..even with the nutritionist suggesting I toss one in every now and then. (Usually, I forget about adding the egg!) Are Eggland Eggs pasteurized? They cost more, so something about them has to be different.
No, the Eggland Eggs are more expensive because they supposedly use a feed that makes them higher in Omega-3's.
Not every area has pasteurized eggs. However, some of those "egg replacer" things that come in little cartons like half-and-half are based on real egg whites, and they are usually pasteurized so are safe to use raw. Be sure to check the label though. You can get TERRIBLY sick on raw eggs.
Really, I think the easiest thing is probably just to get some of the powdered eggs (some grocery stores do carry them, check out both the "natural foods" areas and the "baking" areas), mix them up with a little water, and there you go. Or any sporting goods store (or maybe places like Target and Wal-Mart) will have them in their camping food areas. You can also order them on the internet if it's hard to get to a store.
Egg beaters are really colored egg whites, right? Or so I thought. The purpose of ading an egg was to increase his protein intake. As I said, I usually make him a fresh fruit milkshake and add a little bottle of Ensure to the Ice Cream. He loves it..and I'll stop putting Egg in itl BTW, I looked and we do have pasturized eggs at my supermarket, they were about $2.77/dozen. Up on a higher shelf. Not at eye level. Interesting!
Egg whites ARE protein. However, the yolk has B vitamins etc that are good, so if you can get the pasteurized eggs, that's great. They are entitled to the extra charge, because what they do to pasteurize them is make sure all the eggs are the same size, and then they plunge them into boiling water for just enough time to kill the bacteria, but not long enough to cook the eggs. Sheesh ! A tricky and labor-intensive process -- don't try this at home !
Thank you for the hints Nancy and Sandi. He does like sweet better. He says most things taste too salty. He always did like pepper better so I put that on most of his food before I give it to him. He likes the boost and migty shakes. He gets them at every meal. And gets the twocal with medication.
Hoping to see some improvement tomorrow. He is on 400mg! We are giving it a two month trial. I remain hopeful :)
Well I realize I don't know nuffin! I thought the protein was in the yolk. Thank you Shanteuse...don't stray too far away from me..I need all the help I can get..especially with nutrition. My DH has very good general health. Blood pressure 120/70 average with NO medication, cholesterol stays in upper 190's without medication, weighs about 175 -180 average, 82 yrs. Can you predict a problem if I do give him - say - 2 8 oz. shakes a day as I described. Three scoops of vanilla ice cream, a little can of Ensure, and a handful of fruit, usually strawberries or banana slices. Whirl in the blender. I know there is lots of sugar here. - He gets one at lunch and another one around 7:30-8 PM, as a late dessert. He eats well, always wants MEAT, quite picky w/veggies. Doesn't eat anything "green".
"The Nutrition of Separated & Whole Eggs How many calories are in an egg white?
The white of a large egg, or about 1-1/4 ounces, has 16 calories, 3 g of protein, 2 mg of calcium, 4 mg of phosphorus, 55 mg of sodium, 45 mg of potassium, the weensiest little bit of riboflavin, and no fat, cholesterol, or carbohydrates.
The yolk of that egg weighs about 2/3 of an ounce, and has 59 calories, 3 g of protein, 5 g of fat (2 of which are saturated), 212 mg of cholesterol, 23 mg of calcium, 81 mg of phosphorus, 7 mg of sodium, 16 mg of potassium, very small amounts of iron, thiamin, and riboflavin, and no carbohydrates."
Nancy, he is 82, with a disease that is progressing. If this is what you need to do to keep him healthy now, why worry about longer term problems? The cholesterol is nicely low, blood pressure is great -- I'd probably just throw a little MCT oil in there too, just in case..... (that MCT thing is a joke, but have you tried it on him?) Remember I'm not a doctor nor a dietician, just someone who has done a LOT of reading on nutrition. Can you ask a real dietician about this?
i give Dh cheesy scrambled eggs bacon sausage pancakes waffles and anything else he will eat -lots of fruits/loves nuts,---/and his large dish of pistachio icecream with fudge sauce on it EVERYDAY. he loves pasta and meat too. his weight is stable as is his blood work so who the heck cares what they eat as long as they eat and are happy. as long as there are not medical issues like diebetes:) when they get past stage 6 the food worries seem to go out the window. they are on their last legs of the journey and whatever he enjoys he gets. problem is i dont to be around this stuff i do need to watch intake-!divvi
Divvi, you're singing to my choir. Can you imagine tossing an ice cream paddle coated with ice cream into the sink without a single "lick". Not me. Or the little bit of milk shake that didn't fit into the glass. (can't toss that out!!!) His diet is making me fat and he never gains a pound.
as i am dishing out his pistachio everyday! i have my diet bluebell out for me but i ALWAYS get in a few tablespoons of his before i deliver it to him.. then i go back for my diet stuff. he:) those 2 tablespoons are 250calories i am sure. i still eat the diet stuff toodivvi
Shanteuse, you reek of dietary knowledge, don't sell yourself short. I'm continually impressed with your postings. I agree and I'm not worried about giving him milkshakes, just don't want to give him salmonella poisoning. I am so happy he enjoys the milk shakes.
why not just add instead of eggs if you want some protein-on the side of the milkshake . one of the kellogg protein 10mg bars. they are coated in chocolate and taste like a candy bar. my DH eats 3min a day i have a huge bowl of them and hes always in them-strawberry/peanut butter choc chip-get them at cvs or grocery store. they are good!!!!!!! divvi
My dh doesn't like to eat anything like sticky candy or bars. Don't ask me why not. I do keep a bowl filled with 2 pack cookies, Paks of Cheezits, Snack bags of trail mix. He won't eat this most of the time. He has a large bridge in his mouth (upper teeth) and it's a chore to get him to put it into his mouth. Maybe it's the chewing that bothers him. Good idea though...they make the protein bars that aren't gooey.
Lynn use to eat all the time. ALL the time. Since I placed him I have kept one drawer in his bedside dresser filled with his favorite snacks. He lost all desire to eat and never touched any of it. Not one to give up hope, I continue to bring fresh snacks in for him.
Today when I went in to feed him I found empty wrappers ....on HIS OWN, he ate 6 little PB cups. :) :) :) I know that seems like such a small thing to some, but it was monumental to me. I have been torturing myself wondering if I was doing the right thing...... and now it seems he IS getting stronger.
We had just the best day today. He ate 90% of his lunch with coaxing. No fighting, no anger. He did roll his eyes at me, but that too is a good sign *wink. He even went for a "walk" with me.
My heart is light, the burden and worry lifted some. Praying the medication will work and that he will continue to get stronger. Today, I am very thankful :)
The Megace certainly worked for US...(aren't we ONE??)... and it brought back his appetite very quickly. I was told it is often given to Chemo patients who have no sense of taste and feel so bad, they don't eat. Hope everyone remembers this medication if the same thing happens with their LO's.
Thanks guys ((hugs)) LOL Divvi, you can bet I stopped at the store on the way home and bought a 5lb bag :)
Going in twice a day is wearing me out. More emotionally that physically. I hope soon he will start eating some of his breakfast and dinner. His doctor said once he is stronger I SHOULD cut back to going once a day. If he eats most of his meal and drinks the 2 boost while I am there, that he will have more than enough calories for the day. Sweet! Weigh in is Sat night, keeping my fingers crossed. Thank you all for the support and encouragement. You truly helped me through a very difficult time. Much love, Nikki
For the last 2 days I have only been going in once a day, because.....drum roll please :) Lynn is eating at least 30% of his breakfast and dinner on HIS OWN. I also had to refill his snack drawer!
The doctor saw his yesterday, he said he started gaining strength because I went in serveral times a day to try to make him feel stronger, and now the megace is doing its job. And well, I might add! :)
I was concerned that the megace might not be able to work for him. If his AD mind didn't think he was hungry, would a stimulant be able to work? It seems it can! Such a relief.
Now I have a game plan. If I can't go in for a day or two, he should still eat now. If he doesn't, I know going in a few times a day to help feed him will help boost him back up. Weigh in is tomorrow night, for once I am not nervous about it! YAY :)