I'm about to embark on a new job although this one comes with no job description and no training. Caregiver to the love of my life. How do I do this, where do I begin? I don't know anything at all. We've never had children and have only ever cared for each other and animals. How do I care for a real life human being? What if I do something wrong? How will my choices affect him? I took a career break from work to care for him but lets face it, this is a career change. Ask me how to fix your internet, not a problem. Ask me to manage a team of 25 people, easy done. Ask me to care for my partner while he is going through hell, my god I'm scared. I have no idea how to do this, where to start or how to begin. So I sit on this wonderful site, night after night and research. I've learnt somethings I never dreamed I would have to know at 39. I'm still to learn so many things I don't want to know. I pray every night I will do this well and I won't let him down. Please God give me the strength to get through this, please let me do it right. This most important job of my life. How the hell did we get here?
Sorry guys, just had to vent a bit. Having a tough day and night, one of many. Thought it might help to get it out of my system. Teeth coming out on monday so it's starting to begin, although really it began at diagnosis.
Wendy, you will be a wonderful caregiver. You took the time to put into words your feelings which shows how caring you are. Be strong and take time for yourself so you dont get worn down.
I was the patient without a caregiver. Still dont know how I got thru this twice by myself. Just being there for him and takign him to appointments. Making him comfortable and making sure he eats, drinks and is taking the meds are most important. Its also alot more than that. Mentally this disease changes a person. It hurts and scares them so much that it can come out directed towrads the closest one, their caregiver.
Your post shows how much you care, which is whats necessary to be a great caregiver.
Wendy,
Your feelings are normal. Like Christine said this disease does change a person mentally. I just have one thing, remember that he loves you even when he is mean and saying mean things. He scared like you and may say tings that would never come out of his mouth otherwise. I know I have said some things to my husband (caregiver) that I never knew I could say. It is a scary thing to go through and sometime we do not know how to handle all the feelings inside. I can tell that you arte a caring young lady just by your words. I will be praying for you and your husband during this most difficult time. Keep us update on how he is doing and on hoiw you are doing. This is a great place for comfort and encouragement.
Wendy,
You are already a great caregiver in my opinion and believe me you will learn more as you go. This site is extremely helpful in all ways so ask, rant or rave away anytime you want to and you will get plenty of support.
My wife, my vida, the saver of my butt was an only child and she came through like a pro even without the wisdom of this or any site as she is computer challenged in the worst way.
Don't feel at all unusual if you get totally frustrated at times because you will and don't be surprised if the love of your life yells at you because he probably will since you are there.
Wendy- Just keep reminding him how much you love him. My husband would get to the point where he'd say-Enough already, I know, I know you love me. Remember to take some time for yourself whether you go for a walk or just sit on the porch to breathe. I didn't do that at the beginning until a wise lady on this board suggested it. It will help you to be a better caregiver. Please let me know if I can help in anyway.
Sue
Oh Wendy..you will be great, you already are. Have faith in yourself, you can do it. My husband is my primary caregiver and we are young also. I was 27 when diagnosed and he was 36. I know what you mean about knowing some things you never thought you would need to know at this young age.
He will need support and understanding and you already do that. Be there to listen to him if he wants to talk. Everything will come naturally because you love him.
Bring questions to appointments and write down the answers. Keep all of the bills, receipts, copies of scans and everything else you get. I organize mine in a 3 ring binger with dividers and folders. Everything is neatly organized so when I need something I can put my hands on it in quickly. I would suggest doing that soon, before you get too much paperwork to keep track of. I think someone else on your other thread made the suggestion of keeping a typed list of the medications he is taking.
Make sure he eats and drinks. And just love him...you will get through this. And, as always, post here all the time for support. That's what we do here...help each other through the hard times and celebrate the good times. We are here for you.
Christine...I did not know you didn't have help through your treatments. That is so hard. I am close enough to you..whenever you need anything, you let me know. I will drive you wherever you need to go. You should not go to appointments alone. I am here for you.
xoxo
thanks everyone, I'm learning so much from you all. I don't feel so unprepared anymore although in a lot of ways I probably still am. Christine, you are an inspiration. Getting through this twice on your own. What an amazing woman you are.
Big day ahead tomorrow. All of Steve's teeth being removed. This is the last step before we can concentrate on getting him well.
Good luck tomorrow Wendy. I will be thinking about you
Good luck tomorrow. I will be praying for you and Steve.
Good luck to you Steve! I had my teeth completely removed 3/4/09. Surprisingly, its not as bad as you would think. Having the port and PEG placed was worse than when the teeth were removed. It will take a while to heal, I still have a few places that havent healed yet.
I know its hard to understand but this really is for the best if his teeth arent in the best shape. After going thru chemo and radiation his teeth could have become a big problem for him. He would have then needed HBO treatments which take several weeks before any dental work. By removing his teeth now it will help him to avoid so many issues later.
If you need some easy foods, let me know Im full ideas for recipies and easy things to eat for when you dont have any teeth.
Great news today. Steve and I made it through today ok. Surgery took longer than expected and of course I was a mess, thinking the worse. But as I was going outside for fresh air I saw him being wheeled across the hospital. He clapped his hands to get my attention and then gave me the finger (nice to know he loves me). Gave me great faith that he was ok though and gave me and my lovely sister a great laugh, which was much needed. He was only half an hour out of surgery and completely alert. They didn't take all teeth, left the front top and bottom. He's got some oxycodone which is actually working wonderfully and for the first time in a long time I saw a pain free, relaxed expression on his face tonight. So far so good, it was a tough day but we made it. So we are finally over the preparation part and are on the countdown to beginning radiation and chemo.
Yes Christine, I'd love some recipe ideas please. I've never been much for cooking so find it hard to come up with ideas for him. Need all of the help I can get.
Hi, Wendy
Such great news that Steve came through the surgery and gave you the finger! I LOVE it! What a good sign. That really cracked me up. I like the guy already! Sounds to me that the two of you, like Diane and I, are blessed to have each other. Having a sense of humor in the face of all this will make things easier. We'll all get through this together!
That's great news and I love his spirit and he was saying how much he loves you BTW.
Gotta luv his spirit and yours. You two will do great. We all empathize with your comment about "how the hell did we get here". Many times I have felt like someone smacked me upside the head and I woke up to this and wonder....WHAT HAPPENED?? You will in time find your new normal.
Keep us posted.
Donna
Wendy, glad to hear all went well. Its great to see a sense of humor still there are going thru the operation.
I will send you some food ideas by PM. There is already a list under food/menu ideas for soft foods. Its a completely differnt world when trying to eat without teeth, so that will be a different list.
Thats brilliant news wendy.sounds like a man after my husbands heart lol.
That is awesome Wendy!!! So glad to hear you even got some laughs in today. That is wonderful
Made me laugh and really lifted my spirits. It was his way of saying I love you because he was out of it slightly but still managed to find me in a crowd. Gotta love him and yes, have to find as much humour from this as we can. Hey I have a question. We've been told what to expect from radiation but not what to expect from chemo. Chemo starts next wednesday and he will be in overnight. Does anyone have any advise on this? All we know is we have to go there and they will do a blood test, then do his chemo. We don't even know what kind he is having although I will be asking on the day and writting it down. I'm really worried about it as I don't know what to expect at all.
This is something that is important. Certain chemos can have permanent hearing loss side effects. Cisplatin is the one which causes hearing problems and is the most commonly used chemo for OC. I had it but did not have any hearing problems. Alot of patients, myself included got hearing tests before starting chemo. It can also cause kidney problems so make sure he drinks alot of water.
Chemo can cause him to feel pretty bad several days after it was given. Its very important to take the anti-nasuea meds even if he isnt ill. Once the nasuea sets in its too late to take something that he wont be able to keep down.
Is the chemo once every 3 weeks or is it weekly or daily?
He will be having chemo every 2 weeks from what we have been told and that each time he will stay overnight. He has 3 courses of chemo during his treatment. I feel sorry for the nurses having him overnight because he's not a sit down and be quiet kind of guy. He had never been in a hospital himself until his biopsy. Pretty good to reach 43 without any ops. He will be the patient from hell when he is forced to stay overnight, I'm sure.
Hi Friends. It's been a long time since I've posted. Just thought that I would let you all know that we've called in Hospice as things here have gotten worse. Jim can no longer stand or walk. Each day he is getting weaker. I've been by his side for a year and a half, hoping that treatment would work. But, it did not. All those treatments were in vain. I am so very very sad and tears cover my face all day and night. Looking at him suffer is more than I can handle. Where did my strong energetic husband go ? Where is he ?
Oh Claudia, I feel so sad for you and Jim. I have no words that would even begin to make any difference to you. Just know that you and Jim are in my thoughts and prayers x
Wendy,
I had 3 rounds of Cisplatin (I don't remember you saying what he will get but Cisplatin is pretty standard) and watch out for what they call "ringing in the ears" or if I were you tell him that if he notices ANYTHING funny in his ears tell his chemo doc straight away!! I ended up with permanent high frequency hearing loss because perhaps I didn't recognize this "ringing in the ears" soon enough.
My first chemo was pretty much a non event. Second round caused a lot of nausea but it was also after 15 rads so who knows. The third round was horrible re the nausea but I had also had all my rads so who knows again?
Claudia, I am so sorry to hear of Jims struggles. I will keep both of you in my prayers. Please remember we are here for you.
Claudia I am so sorry to hear Jim has not responded to treatment and is now palliative. I do hope hospice is able to provide comfort and support for you both in this very difficult final stage of your lives together. May you find strength and courage to face each day. Know we are all here for you.
Hey clauadia
(((((HUUUUUUG))))))
Thanks for the warning David. I'm not sure what he's having for chemo yet. They haven't told us but we will find out this time next week. Even though Steve doesn't get on this site he does listen to everything I tell him I've learnt from you guys. So I've passed on your warning about the ringing ears. Is hair loss associated with Cisplatin? The reason I ask this is that Steve has alot of hair and I think we should cut it really short before we start chemo but he doesn't want to. He's never really cared about his appearance (hence the long hair) but I'm really worried the actual event of losing his hair may upset him when/if the time comes. I've read some chemo's don't result in hair loss but wouldn't have a clue which ones. Also, what should we do about beards and radiation? The doctor said the hair will go but should he shave before having radiation. I was thinking maybe a couple of days before. He currently has a full beard.
No hair loss from Cisplatin but the rad will "blow" the hair off the back of his neck where the rad will exit. The rad will also most likely cause his whiskers to fall out like little grains of black sand. The hair on the back of his neck will slowly grow back and some of the whiskers may return. I lost all my whiskers and the hair on the back of my neck. Back of neck returned after almost 2 years; whiskers above my chin line came back but the ones below never did so I don't have to shave there except for the occasional rogue whisker or 2. Remember we all can turn out differently and always keep that in mind. Whatever happens to him will most likely be NORMAL for him.
Hi Wendy. My husband is 12 weeks out of treatments today. He had 35 IMRT treatments and 7 weeks (1 x a week) of Cisplatin. He had a thick head of grey hair and a beard before treatments started. The Cisplatin caused permanent hearing loss in both ears. The hearing loss did not show up until after he was done treatments. He didn't loose all his hair but it really thinned out a lot, very noticeable. He lost all his facial hair from the radiation but it is slowly.....growing back. The hair on the back of his neck just started growing back last week - baby fuzz. Best wishes to you and your husband. Wanda
Wendy just droppin in to say I am so glad you are here. There is no better place to be. Please share whatever you feel you need to share not only the technical stuff but the O my why do I feel this way? stuff too!! It has gotten me through some tough caregiver hurdles and kept me sane!
haha on the giving you the finger...Bob had surgery last Thursday and a very caring friend asked " what were the last words you said before he went in" Well they were "bite me" he was busting on me about the surgical waiting room at the hospital becasue he had to wait there for me (minor outpatient thing) so he was teasing and I said Bite Me the orderly was taken aback but it made him laugh as he was wheeled away.
We also had some very baaad dark humor jokes that got us through his cancer treatment five years ago ..when repeated my friends exclaimed O thats awful but it was our thing and any humor is better than no humor !! Please remember you have lots of friends here that understand.
My wife can be pretty cruel at times. When we were waiting at Moffitt to see the Oral Surgeon (the first appt I had with Moffitt) we were given a pager and told we could wait out in the main lobby entrance of Moffitt. We knew the doctors name and it sounded like he was East Indian so every East Indian doctor that walked through the main lobby she would jab me and say "I wonder if that's him?". Well one really overweight such doctor walked by and of course she jabbed me but she added "I can just see it now, he's standing over you in the operating room with a knife in his hand and suddenly he has a heart attack and slumps over and stabs you in the neck!". He disappeared and a minute later our pager goes off and now I'm sitting in the exam room and guess who walks in and guess who jabbed me again.
David....that is a hilarious story
Wendy,
Good luck with your appt. tomorrow. I didn't think that I could do this caregiver role either. I am not going to say that it's not easy but it is doable. Things fall into place when they need too and you just keep perging forward.
Pat
Keeep your chin up wendy.
good luck
liz
Thanks everyone. Your support and advise makes this so much easier. Just wondering if anyone has any advise on how to get a man to take serious possible side effects. We have cream for his skin, mouth washes to help with any sores etc but do you think I can get him to use them regularly. I know he feels like crap but if he doesn't use this stuff he's going to feel a whole lot crappier. Any idea's on how to convince him to be vigilant with this stuff before he learns the hard way. Is it a man thing, not wanting to care for yourself. How do you get someone to step up and care about their own health. I know he's doing treatment which I am so grateful for but I'm really concerned about more pain from side effects, just wish I could get it across to Steve how important all of this stuff is.
I had the same problems with Rex he would not use any of the tools that they gave him. It wasn't until he hit his bottom that he started to use the rinses etc. He wouldn'teven use the pain pill.s He is starting to use this stuff now, I think he knows that it helps me feel better.
I didn't ask for this job, but it has been given to me. I can only do what I can that's what Ihad to come to realize i can't force anyone to do anything. I had to put it in God's hands
Pat
Thanks Pat, your advise is very helpful. I think Steve will have to hit rock bottom before he realises as well. But he's a big boy and as much as I want to, I can't force him to do things. Nice to know others out there had the same issues as well.
Wendy, some members here have printed out pages from OCF and given them to their patient to read. For the most stubborn patients, the caregivers have 'accidently' left printed pages lying in places that they would be read by the patient. That has helped several on here to get the important points across.
Great idea Christine...
Wendy, does Steve know that you are on a forum requesting information on how to best deal with this awful disease?
If not I guess you will have to be selective about what you 'accidently' leave lying around.
Hope he soon sees the value in what needs to be done for his own wellbeing.
Time to switch into crafty nurse mode! Try saying something like "Do you want me to put the cream on your neck now, or do you want me to wait 15 minutes?" Rubbing the cream on is a good way to have a little physical contact and giving him the choice of when to do it gives him at least a little control over his seemingly out of control situation (besides, you know men don't know how to apply lotion properly!). Try the same with the mouthwash..."Time for mouthwash...which one do you want to try this time?" Eventually he'll comply just so he can get you to go away for a while so he can take a nap! Try hard to keep your sense of humor - it really does help!
thanks girls, great advise from all of you. We ended up having a talk this afternoon (i talked, he wrote) and have come up with an agreement. Today was a bad day because of chemo side effects so we are going to start tomorrow with everything although he did let me rub cream on him tonight and he did do at least one mouth wash. I think (hope) he's starting to realise the reasons behind my stress over this. It's broken my heart to watch him in pain so much so where ever we can minimise and have some control over any future pain, I'm all for doing whatever it takes. These creams and mouthwashes may not seem like much to him but in the end I know how important they are and what a difference they will make. Gabe, he knows I get on this forum and listens to the things I tell him. I don't tell him to much though when it comes to bad stuff as I think he has enough to deal with. Just try to stick to what we need to do and any positive outcomes so he knows it's possible to beat this disease. The things I'm learning from you guys are amazing and I tell Steve. When the doctor's then suggest the same thing Steve looks at me because I knew it already. Lucky for me I have you all.
Hi, Wendy
Just read all of your posts on this thread- sounds like you are gonna do just fine in the caregiver role [and it's a tough role to be sure]. My [very hard headed]husband's nickname for me during his illness was "Nurse from Hell". He kept a journal and drew funny cartoons of me with a chart or thermometer or can of 2CAL, or something else I was "torturing" him with. But he also drew lots of pictures with his arm around me or kissing me or just smiling at me. In my experience, your biggest role is to stay ahead [by reading everything you can on OCF] of the game during his rad and chemo so that you are not caught by surprise by any reactions he has. Remember - you need to stay one step ahead because it's not as scary that way. And NEVER be afraid to badger a nurse or a doctor if you feel that you or Steve are not getting what you need in terms of information or pain meds, etc.
You are on the right track. My Best to you both. Amy
Hi Wendy. My husband drove me crazy when he first started treatments. He is very independent and does not like to be taken care of. He also hates to take any kind of prescription drugs. So.....when he started chemo I told him to take the Compazine they gave him because the nausea would really kick in 24 hours after treatment. Of course he didn't listen to me and eventually the nausea was so bad that he was on Zofran and Compazine. He took the Zofran up to a month after treatments ended. He had the PEG put in and didn't use it the way he should have until he dropped around 20 lbs. He was supposed to be doing 5 cans a day and was lucky to get 3 in. He had cream to put on his neck, I had to bug him about using that.
I used to get so frustrated working two jobs outside the house and then being the food police, medication police etc. I would have days where I would just cry in my car driving to and from work. I never lost it around him but there were days when I would be so......frustrated with him not doing what he was supposed to do that I could have screamed. His response to me was always "I told you from the beginning, I am going to be a difficult patient". He was right. Hang in there!
Thanks everyone for all of your support. I love to read your experiences as it makes me realise other people have been through it as well. Also makes me realise I'm not alone in the frustration of being the food, medication, cream police as well. Gives me great hope we will get through this.
Wendy, its very difficult at times. This type of treatment can be downright awful sometimes, but it can be done. The patients who post here are living proof it is goign to be ok. Maybe not back to exactly how things were before but pretty darn close. Next year this time you will look back and remember these days and maybe even laugh about it.
I went thru some bad times and now my children and I can look back and tell jokes abotu how I acted while under anestesia. On the way home from one of my surgeries I made my son stop at several stores so I could go shopping. I bought a bunch of stuff and the next day I asked where it came from. All had to be returned, we didnt need any of it. I also stopped and picked up lots of food that I wasnt able to eat. Wow was it expensive for me to have that surgery!!!!
See, it can be funny. Maybe not now or even next month, but down the road when its all over you may be able to laugh at some moments you shared.
Christine you sound so much like me in the things that you did but don't remember them. A lot were scary and it's a wonder I never got injured or broke my foolish neck. I still have no memory of the 9 months to a year before those miserable implants. I have enjoyed reading all of the post in this one. Thanks all.
Wanda,
I can so relate to your story here. I had all the same issues that you had. He still doesn't want to do the peg tube like he is suppose so I started to put in 2 or 2 1/2 cans in a pitcher and did it that way. Told him I added water to it. My husband ended up loosing 30 pounds.
Pat
Dear Wendy,
I am new here. I see that you have taken up the job of a caregiver. I must say that's really nice of you, to share information with all of us.
The other day while doing a google search on cancer i came across a site called
www.caring.com/cancer. This site provides reliable information to help all cancer patients. It helps to make better choices and find ways to cover the increasing cost of care. It�s worth checking out.
Hi,
I am new to all of this as my father has been diagnosed with Tonsil Cancer and just started his radiation last week. He lives in Northern California and I in Southern California. Is anyone in this same situation where you cannot be a caregiver on a daily basis? I feel so helpless but this forum has given me so much already...I have a list of items to purchase and a ton of great advise to give my poppa.
He is living with my grandparents so he is not alone but they are older and won't be able to give him the attention he needs. I plan on going home at least once or twice a month but feel it's just not enough...any suggestions on how I can still be a good caregiver...from afar?
Thank you so much.
Care giving from a distance will be a difficult job,but if you keep in touch by phone and e-mail your moral support will be much appreciated i am sure.Its when relatives distance themselves from loved ones that things get really rough.
good luck
MS
Try and get him to post here. Depending on him and his Tx, he may very well need some concentrated caregiving for a good period of time during and post Tx. Each of us can respond differently but the majority of us suffer from the 4th week into Tx till about the 3rd week after Tx with the weeks AFTER Tx being the worse.
If he just started Rad encourage him to eat like crazy because soon his taste may go and along with that his desire to eat. He also must consume around 3000 cals each and every day and drink 48 ozs of water each and every day starting now and lasting at least until he is one year post Tx.
If he won't post here see if you can get him to call me at 727-322-5669 during the day. I'll be more than happy to sgare with him or you.