Frustrated and venting

[disneymarie]

I'm totally venting here... My DH has stage 4 heart/lung disease and has recently been diagnosed with a serious lung infection similar to TB, except not contagious. His infectious disease doc has put him on a strenuous regimen of 3 harsh antibiotics, similar to chemo, which he will be on for 18-24 months.

Ugh. It is not going easily. DH feels icky most of the time. Not exactly nauseous, but very fatigued all the time. His stomach hurts. He eats like a mouse, several little snacks during the day interspersed with 2-3 hour naps. I am really trying to be supportive. But it's frustrating when I plan a nice dinner and 20 min prior to supper he doesn' want to eat. And he doesn't want to eat for the rest of the evening. There goes dinner! It's pointless to make a good dinner if I"m the only one eating it. So I've started holding on fixing dinner until I'm sure he's going to eat it.

I'm trying to make meal times pleasant. I make homemade soups at least once a week and he will eat that. He'll eat honey nut cheerios, saltines, grilled cheese sandwich, hot dogs, and baked potatoes. Which is weird because he has always been a big veggie eater. But now the very thought of salad, broccoli, peppers,etc, pretty much anything other than refried beans and mashed potatoes, just makes him ill.

I feel guilty for feeling aggravated. I like to make a nice lunch or dinner. We used to eat out, but now it has to be Olive Garden where he can get...soup. Or Costco, where he can get...hot dog. I am just about dying for a good roast beef or chicken with salad and veggies. Today, he ran some errands. I purposely didn't eat all afternoon because I was going to make a nice dinner. He came home feeling sick, didn't want to eat. I was STARVING, hadn't eaten since 11am! He went to bed. I took my DD19 and we went out for a good dinner (that way he didn't have to smell the food cooking.) It was very nice, but then I felt guilty about not taking DH.

The main side effect of all this, for me at least, is that I find myself getting hungrier. I want to eat everything, all the time. I think it's because I'm not getting enough protein. And that I'm feeling totally frustrated and deprived. Who wants to fix a whole dinner just for one? Foo...

Don't take it personnel, really. When I was pregnant the last time only the thing your dh will not eat now were what I felt up to eating. Even years after dd was born I could not handle cooking off hamburg because of the grease.

Keep things available he will like, make dinner a casual event, even some good frozen named dinners. Maybe even the smell of cooking makes a loss of appetite.
It could be the smell, get ome ready made things, I am sure he wants to eat. I can only imagine the pain, and stomach reaction to the antibiotics. Just eat alone, be happy he will get better. Read on some food sites or health ones of people that adverse food appetites to suggest meals, or snack lite food that was agreeable.
Like morning sickness, you can only tolerate when and what you can.
Hugs for him to be better soon,

 

[minkydog]

Don't take it personnel, really. When I was pregnant the last time only the thing your dh will not eat now were what I felt up to eating. Even years after dd was born I could not handle cooking off hamburg because of the grease.

Keep things available he will like, make dinner a casual event, even some good frozen named dinners. Maybe even the smell of cooking makes a loss of appetite.
It could be the smell, get ome ready made things, I am sure he wants to eat. I can only imagine the pain, and stomach reaction to the antibiotics. Just eat alone, be happy he will get better. Read on some food sites or health ones of people that adverse food appetites to suggest meals, or snack lite food that was agreeable.
Like morning sickness, you can only tolerate when and what you can.
Hugs for him to be better soon,

I think what he's experiencing is a lot like morning sickness. I had terrible morning sickness with all three kids. I wouldn't wish it on anyone! With him, the nausea and ickiness comes and goes all day.

Things went a little better today. It's been cold and rainy all day, which usually puts him into a tailspin. He's coughing up stuff and using his nebulizer a lot. I finally made him go to bed for 3 hours and made a nice dinner. He ate very well and was very appreciative.

Who knows what tomorrow will bring? Well, it *is* Mardi Gras. That means a big pot of jambalaya on the stove. It's made with rice, which is something he can eat. i don't make it very spicy, so perhaps we can all sit around in our beads and enjoy supper.

 

[davedmaine]

Most of us don't know what you're going through, so we can't empathize. We can sympathize though and wish you both the best. Sounds like you've been a real hero for you husband through this and I'm sure he appreciates it..

 

[kirstenb1]

Minky, the only thing I have to add is, try not to add extra stress. For instance, I was raised...clean your plate, we never throw food away, even if we eat the leftovers for the next 4 days. I don't know if you were raised the same way, but it really dictates how you view food/wasting of food.

One thing I've found that is very freeing....the rest of my family has no problem with rejecting leftovers after 1 or 2 days. So why should I be stuck with them to eternity, lol!!!

I know you know this, but for your dd, start with pasta/rice/potato, add a veggie, then it's easy to add meat for yourself. For your dh, just cook whatever will work for him that day, and try to take the pressure off yourself. Maybe you'll waste a little food, but think about the advice your best friend would give....ease up on yourself.

 

[disneymarie]

I think what he's experiencing is a lot like morning sickness. I had terrible morning sickness with all three kids. I wouldn't wish it on anyone! With him, the nausea and ickiness comes and goes all day.

Things went a little better today. It's been cold and rainy all day, which usually puts him into a tailspin. He's coughing up stuff and using his nebulizer a lot. I finally made him go to bed for 3 hours and made a nice dinner. He ate very well and was very appreciative.

Who knows what tomorrow will bring? Well, it *is* Mardi Gras. That means a big pot of jambalaya on the stove. It's made with rice, which is something he can eat. i don't make it very spicy, so perhaps we can all sit around in our beads and enjoy supper.

I am glad that he ate, the baby steps one by one! With the cooler weather do you have a room heater to take dampness out of the air, ugh, while running a nice ultra sonic humidifier for the cough. Does sitting n the bathroom with the shower help. When my asthma is aggressive I feel better when doing this. The steam warms my bônes and water in the air to breath.

Can you cook the jambalaya earlier and warm his up in a bowl later not the have aroma in the room prior to eating. He will start to get better, it is one day at a time until this is far behind you all.
God bless,

 

[wilkeliza]

My heart goes out to you. My mother and grandfather both went through this when they were going through their chemo. It is so hard to watch.

Is there anything that is a 100 percent yes he will eat it if offered? If there is at least once a week sit down with him and have that meal with him. It will help relieve you of your guilt because you are sharing a meals with him at some point but for the rest of the week you can prepare things you like and know you will enjoy. For my grandpa it was pizza from this one restaurant. I always found it weird because the 23 years I knew my grandfather he never ate order in pizza and then all the sudden it was all he ate the last year of his life.

Also if you don't have a family counselor it is probably time to find one and start seeing one. I know for me I found the sessions so freeing because I could say whatever I needed to with out feeling like I was being judged. I could cry to someone who I knew genuinely cared about me and could help me through the emotions of what was going on.

At the end of the day love him and take care of him but also watch out for yourself. You have to come first at some point and not feel guilty about it.

 

[branv]

I am so sorry for your struggle. Caregivers go through so much, and so seldom have the support they need.

I will truly say I can't imagine your situation, and this is so much more for you, including the companionship of sharing a wonderful meal you've prepared. But thought I might pass on one thing that has helped us during my current scent/food aversion problems related to pregnancy. Poor DH has just gotten left behind -- having to fend for himself, which means a lot of frozen meals, sandwiches, etc. Poor guy even had to switch to tea b/c if I smell coffee....oooooph. So he has taken to using the grill a lot. I know, it's FEBRUARY, so it's not great. But he can make a lot more things than he would not have been able to in here (even though he occasionally has to sit inside with the shades open to watch the grill due to the weather). He's had fish, all kinds of meat dishes, grilled veggies, even a pizza. Technically, with the gas grill, he could even cook things in a pot like stew or beans out there. If you have a covered porch, you could even use your crock pot or an electric griddle/pan outside.

I know it's not ideal, but when smells are an issue...well, it has helped us anyway.

Best wishes to you and your family.

 

[cabanafrau]

It's great that you come here to vent and I absolutely understand that you have many reasons to do so. If I could gently say that maybe your plate has been running over for a long time and you might want to consider setting up with a professional to talk some of this stuff out? I'm not suggesting that to be nasty or say, hey, don't talk about that here. By all means, vent away. It's good to get it out. I'm just saying maybe it's time you truly made an effort to treat yourself more kindly and improve things for yourself in a solid way.

I do wish you well and hope I'm not offending you.

 

[minkydog]

It's great that you come here to vent and I absolutely understand that you have many reasons to do so. If I could gently say that maybe your plate has been running over for a long time and you might want to consider setting up with a professional to talk some of this stuff out? I'm not suggesting that to be nasty or say, hey, don't talk about that here. By all means, vent away. It's good to get it out. I'm just saying maybe it's time you truly made an effort to treat yourself more kindly and improve things for yourself in a solid way.

I do wish you well and hope I'm not offending you.

No offence taken. I had a good therapist but she moved away about 18mon ago. I prolly doi need to find another one.

Y'all are never going to believe what DH wants for lunch. Gumbo! So now I'm off to find a restaurant that has decent gumbo!