Hi all,

Still keeping my positive outlook here but lately it is everything I can do to keep up my energy. (before you ask...yes, I'm eating and rest? well, comes and goes) And I feel so guilty about being so tired all the time.
Like Hubby isn't!!?
Every minute of every day is used up. Time to eat Hun, time for meds Babe, push those fluids Sweetie, lets flush your Peg, time to cool and moisturize your neck Darling ...
I feel so guilty every time I have to bother him with something else that has to be addressed. I know he knows it has to be done ( and he never complains) but I feel like I'm torturing him all the time. It just wears me down!
Just wanted to put that out there. I haven't noticed any of the other CG's express any of these feelings and hope I'm not the only one. I figure no one really wants to voice their own discomfort thru all this becuz it really is minor in comparison to what our Loved ones are going thru.
~Ija~

hi
Sounds like you have a wonderful relationship and through all of this when it is over and all is said and done maybe you can discuss something pleasant during what you seem to think is torture. My friend always talks to me about going on a trip after this is over. Maybe a second honeymoon is in order. To dream together may shed a little light. You are doing such a great job and it is not easy taking care of us. I would love for my husband to say home and take care of me. Maybe inbetween your tasks do remember to take time for yourself hopefully can find time even to read, bath or just sit and listen to favorite music and enjoy a cup of tea or coffee. I hope you can get some sleep...

I remember when my friend took care of her mother who died fighting cancer and how tired she was and you are not alone. Do you have anyone who can take care of hubby for an afternoon or evening that you can just relax go sit in a park...don't feel guilty about doing that cause when you relax and do something for yourself you will be better to take care of hubby. Do take time for yourself it will help...

Ija,

Believe me, you are very normal. As much as you love your hubby and want to be a good caregiver, it takes a lot out of you. We are one year out from Bill's last treatment, and I am just now crawling out of the tunnel and feeling back to normal...(just in time for everything else around to blow up!)
You do need to take care of yourself...eat, sleep and get out a little (I would go fun shopping while Bill was having chemo - kept me sane.) I noticed for sure by 9:00 at night that I was done...wanted to be left alone, couldn't handle lots of aggravation and I would be very happy that Bill was in bed asleep. By morning, and after a good nights sleep, I would be ready to take care of him. So watch out when you feel very down or scared, or just negative....you may just need to rest or sleep.

Deb

Ms T

Boy is your husband one lucky man!!! You are so wonderful to do all those things.

Im not a caregiver, but a patient who didnt have much help going thru this. I basically had a driver and thats about it. Nobody checked on me about meds/food/swallowing/PEG tube/calories/hydration, and the other never ending things that go with OC.

No wonder you are beat!!!! Just wondering if you could have your husband pick up a couple of these things to care for himself. That might make it easier on you and him a bit more self reliant. I know how bad it is going thru tx but he should be able to do something to help himself. He needs to know as much as you do about his care. What would happen if you got so run down you go ill too? Please take care of yourself so you are able to care for him.

Ija, you are right, as a caregiver it is hard to admit how difficult it can be. The first two months following surgery, I felt totally out of it, dead tired all day long, then after getting my wife to bed at night, would try to find answers on this website leaving me more and more tired. One thing that has helped the last two weeks has been getting a feeding pump so that we could get down to just two feeding during the day. It has freed up time so that I could get back to work, keep up with the kids and laundry. Also, my wife has taken over some of the responsibility for some of her medications and hooking up a feeding from time to time. I do feel somewaht guilty but I think it also is important that my wife has a purpose to get up and be active during the day. I am sure there will be days (like today) where she is not up to doing to much but by her taking care of some of it over the last week, I feel fresh and able to give her plenty of attention. I would suggest trying night feedings with a pump if possible.

I know it can be difficult turning some of the resposibility over to your husband or my wife for their care after seeing them so vulnerable but there are things they are able to do that can make a big difference. Hopefully this doesn't sound too selfish but there you are not only doing the job of being his caregiver but you also have to deal with all the emotional issues of your husbands illness. Good luck to you and your husband.

Ija- You are definately not alone with how you are feeling. My husband is very self reliant but I'm constantly reminding him to take his meds, flush his PEG, etc. etc. I'm sure the emotional stress is getting to you also. During stressful times your immune system takes a beating. You should get a physical and make sure you're ok and that there is not an underlying issue ie thyroid trouble. I just had mine checked because I've been unable to lose the ten pounds I put on since this hell started over a year ago. Ditto to what the others have said about taking time for yourself. During my husband's chemo treatments I would take a slow walk to the cafeteria and sometimes buy a trashy magazine to read just to take my mind away for awhile. He will be starting chemo again tomorrow so I will have to start my routine back up again! Take care of yourself.

Sue

ija,

Your doing great but you must continue doing great. Without my wife I would be dead today. No ifs, ands or buts about it. And I didn't appreciate her pestering me UNTIL it was over and I realized how valuable that was. I was not a model patient!!

ija,

It's a lot of work and I don't have a PEG. Just keep up the good work. Your hubby is not complaining because he knows it has to get done...He appreciates it.

I ordered a staff but I'm still waiting for the insurance approval.

Hi Everyone,

Thank you all for the uplifting words and support.
I feel I made it sound like Hubby is a lump on a log here. He's not. This is definitly a team effort and Hubby helps a lot with his care and the house work too. He sleeps in the other room hoping that his up and down routine thru the night won't disturb me. ~grin~ I'm on hyper listen mode and alltho I don't get up when I hear him (it's hard not to! I listen carefully to make sure he's ok) I'm fully aware of when he's up and when he's sleeping. It's all I can do to stay in bed and not check on him. But if I did then he'd feel bad that he woke me.
I do take time for me. But even tho it is a nice change it's still time spent and there is so little time during day light hours to get things done. I don't wander far when he's in chemo. He dosen't tolerate the Chemo well and I don't want to be far if/when he does react so I can be there for him. Seeing my face helps him to know it's gonna be ok. On the brighter side!!! Only two more chemos to go!! WooooHoooo...
We talk a lot about what we're going to do when he's better. We've made plans and are trying to save so we can take a recoupe vacation after all his treatment is done.
And we laugh a lot! there's always a lite side to things. Just yesterday on the way home from treatment he had a cup of ice water with no lid that he was trying to sip and the road was bumpy. He decided to dump the water out of the window. ~ROFLOL~ well I think y'all know what happened? It came right back in his ear and all over the inside of the car. He looked at me with a real peeved look and I just started laughing, he couldn't help but join in, it was such a "Blonde" thing to do!
I knew this would be hard and prepard as much as I could for it. I take my vitamins, take power walks around the hospital during radiation and I always fit my nail day in twice a month. You guys out there really should try a pedicure!! They're great.
Even with all this and preparing mentally as best I could I just didn't expect the mind numbing fatigue. I just wanted to put that out there. I hadn't seen any other CG's express this and wanted them to know if they were feeling the same as me they wern't alone.
Thank you for all your kind words and I've decided I'm gonna fit in a "hair day" this month too! A woman always feels much better after getting her hair done.

~Ija~

Hi lja,
I haven't posted in a month or so - I had to send my laptop back to get the keyboard replaced so now I'm catching up a bit here. I've been the caregiver for my husband the last four months.

Your fatigue is perfectly understandable. I have also felt overwhelmed at times, some more so than others. You are doing the right things by 'treating' yourself. One thing I found really valuable when David was going through the worst of treatment was to go and exercise very hard early in the morning before he would be waking up. I found it very theraputic and I always would envision myself getting stronger in doing it in order to face whatever came up that day. Also, if you have access to a caregiver support group that can be a place to let your hair down, so to speak, with real live people (not that we aren't real and live here, lol) who are going through a similar situation.

I'm not sure we can ever fully prepare ourselves for what is to come with this disease. Even though the doctors tried to tell us it would be hard, we really had no idea the toll it would take on both of us.

Hang in there,
Kendall

MsT

After reading your update, it seems like you have a pretty good handle on things. Its rough being a caregiver, and it sound like you do an excellent job of balancing everything. Glad you still squeeze in some time for yourself.

Hope your husband is continues doing well with his treatments. Hang in there, soon it will be onto the recovery phase.

Christine,

Thank you! yup we're both still hangin' in here. Still tired. heh,heh..Oh well, we'll get caught up on that eventually ~grin~.
I hope all is well with you.
~Ija~

Not a nice thought maybe I shouldn't say it but my husband when things get busy he always says he will sleep when he is dead...well we all have a long time for that!!!

Hello,
It is absolutely normal. I was absolutely exhausted when Martin was at his worst. My firm was really understanding and I was able to work from home most days, so i could look after him. But I also felt I was disturbing him, nagging. Martin it's time to feed. Martin I need to give you some paracetamol through the tube. Martin just sit up a little and you won't get a belly ache. Sweety I need to put your cream on... Louise the dietecian was fantastic and phoned me everyday to find out how Martin was doing. He got so weak and skinny (9 stones, 6ft2), he weighed the same as me, that he slept all of the time and wouldn't have woken up for a feed had I not done it.
It is draining, the hours, the worry, but Martin recently said "I know I don't say it but thanks for looking after me", and that was the nicest thing anyone could have said, it made me feel all emotional. And as I am a bit rubbish with keeping my emotions, all I could say without falling to pieces was "well of course I look after you".
It drains you. But it helps to think that I am helping him, and making him better in my own way.
It gets better, as soon as he put on weight (he's still very thin, but not as skeletal as before), the tube came out and he is slowly slowly getting better.
Just hang on in there. When he feels better we are planning to go somewhere warm with a beach, and just flop and relax, maybe Italy or Greece.
Charles the security guard from Sierra Leone who works in the pound shop said "Cecilia now that the treatment is finished you are his cure, smile, don't ever frown at him and say positive things, hug and cuddle and say:"hey baby, looking good" ".
I think he is right.
To all care givers here good luck and good work.