I'm very tired and exhausted so forgive me if I am negative as this is the only place I have to talk. Jim is almost unbearable to live with - he is so frustrated - he is having such a difficult time in breathing - he says a few words and then gasps for breath; sleeps with his head propped up on 4 pillows. I made an appt. with his Dr. tomorrow as I want her to listen to his breathing; the PET about 6 weeks ago indicated little change so I'm not sure why he is having this problem. Can anyone out there explain it?

I made an appt. for me with a therapist that specializes in cancer patients and caregivers on the 15th...hoping she can help me as I feel like I am slipping into a dark hole. The sadness is overwhelming, but I am beginning to resent being yelled at over the smallest things - this morning at 6:00 it was because I haven't obtained a toll tag for our new Challenger - I tried to explain it to him that we are billed for it regardless if we have one or not - he told me to just handle it and quit explaining it; "just get it handled"!! I wanted to lash back and tell him that he can get on the computer and do this as much as I can - plus he has the time to do it; but I bit my tongue and said I'd do it when I got home tonight....I'm exhausted and people at work are beginning to notice it, NOT GOOD!!!

Again, sorry to sound negative, but it's kinda tough here in Dallas right now!

Paula- Sometimes when there are calcifications in the brain the patient can become agitated. I'm not saying that is what is going on here but it may be an explanation. Neil got very agitated at times. Is he on much for pain? These may need to be adjusted also.

I'm so sorry for what you are going through. Don't ever feel bad about venting here. Many on this board got me through the darkness of my life at that time. I know it sounds trite but hang in there. Being strong at times like these is so very hard on the caregiver. Try to take a deep breath and a hot cup of tea once in awhile. You MUST take care of yourself. Please pm me if you want to talk more candidly.

Sue

Paula, I am so sorry for the pain and frustration that you are going through. I can't imagine how totally draining this expreience has been for both you and Jim.

Sometimes caregivers can forget to take care of themselves. Just as Jim has been through hell, so have you. Please be easy on yourself and understand that you are doing the very best you can. Hope you can find some ways to release your stress and give yourself a mental break. You are welcome to pm me and I'll give you my phone number if you need to vent out loud.

Dodie

Thanks everyone for your encouragement - we did go to the Dr. last Friday and she was very upset with Jim that he ignored my requests to go see her. His breathing is horrific! She doesn't know what is causing it, but Jim is taking 4 breathing treatments a day with a nebulizer, plus prednisone and an antibiotic. I thought he was getting better, but he's not - I was just imagining that he was.

I went to the Dr. today as my knee has been killing me - turns out I've torn my meniscus and need surgery. I looked at my Dr. and told her she was crazy - I am Jim's legs and do all the getting up and "fetchin" for him....so am not sure what I'll do at this point....

Paula

How in the world did you tear that and not even notice?!

Paula,

As I've never been a caregiver I'm really no help to you in coping with the emotional turmoil that you are faced with as I've never been there myself. Caregiving is the hardest job on the planet in my opinion.

In reading your signature and seeing what Jim is dealing with, I'm going to make a few assumptions that may help.

1st, Jim's had a neck dissection and radiation to the head/neck which will usually disrupt swallowing mechanics and make aspirating very easy to do...aspiration can/will lead to pneumonia eventually. It's a common occurance for me.

2nd. Looking at Jim's condition I can only assume that he's on some heavy opiate pain medication. The way those work is by depressing the central nervous system and your circulatory system...one of the side effects can be laboured breathing. I had many times that I had the same issues when I was on Fentanyl and it would come and go. I found I had the most troubles when I would lay on the patch or have heat affect the patch and cause more fentanyl into my system then normal...it put me in the ER a few times.

Those would be my best guesses.

Good luck, keep your chin up dear.

Eric

Paula, i am so sorry for what u are going thru. caregiving is a tough, tough job...but listen to the others--u have to take care of yourself as well--or u wont be any help to Jim.
even if its a few minutes to get out and take a walk (at night--it is Texas and if your knee permits).
I know time is not your friend right now and there never seems to be enough of it, but it will do u a world of good to take a few moments for yourself.

Paula- I had the meniscus surgery a few years ago. While it IS painful, it is not horrible. I was sore for a few days but ambulatory. They want you to get moving fairly soon after. It took only a few hours and I felt so much better after i healed. I don't even know how I injured mine. You must take care of yourself-you know I'm speaking from experience!

Paula,

I am so sorry for what you are going through, and will continue to face. You are in my thoughts constantly.

As for your knee, I know you can't do anything right now, but maybe a temp knee brace or immobilizer? Surely the orthopaedic office has something they can offer you for this time being.

Maybe go change into a pretty supercape for the day? I will send you my cell number if you want to talk/have time. not sure if you have the correct number.

Much love and strength to you. Stay strong.

Donna

paula
i just can't believe that you are still struggling on after all this time.Jims will to live must be mind blowing.As i always say and you know only too well you know where i am honey.xxx

Paula,

I, too, am so sorry to hear how difficult things have gotten for you. Good for you that you are looking into therapy for yourself. I did that last year and it helped immensely. Take care of yourself and get the surgery on your knee. Your own health is important now. Can you ask family or friends to help out for the few days you may need it?

All my best--
Anita

Paula,

I so know what you are going through. My husband and I had almost 7 good years after his radiation, chemo and neck dissection. Last Oct. a tooth on the radiation side started going bad. No one would touch it due to brittleness of his jaw. We went to dentist affiliated with our medical insurance. They did a "special" root canal. I think the only thing "special" was they exacerbated his down turn in health. He had a lung abscess in Feb...some of the hospital drs. thought it was caused by the bacteria from the root canal getting into his lungs. He was in hospital 6 days. He started seeing a maxillofacial dr. in our ins. group. He had a few good weeks and then bam...terrible jaw pain. He also developed 2 abscesses on outside of his jaw. MF dr. referred him to infectious disease dr. who put him on IV pump antibiotics. He went back in hospital in late May with pneumonia...3 days that time. He had another okay couple weeks, and then last Sat. I had to take him to hospital due to terrible jaw pain. He wasn't able to swallow much at that time so he couldn't get pain pills down. Another 4 days in hospital as he had pneumonia again. He is aspirating his food and pills into the lungs. Drs. at hospital convinced us he needs a PEG tube as he's lost 50 pounds in about 4 months. He goes in Mon for tube. He dodged that bullet during radiation, but it came back to hit him.
I think we may have to go back to hospital today as he has been in terrible pain all day...his jaw is so swollen. He may not be able to have tube on Monday if the jaw is still so bad. He's sleeping now. for so long, our days have been filled with his pain and not much else. I look outside my window and see neighbors going to an fro or working in their years, and I am so sad....our yard is his pride and joy. This week we had to hire a gardener as he just can't do it now. I have to have faith that we will get through this, but some days it's so very hard.....A few years ago, he was diagnosed with chronic lymphocitic leukemia. He is still in stage 0, but his white count is climbing. If we don't get him better, he will never be able to tolerate the chemo when it's time. I am scared because I am a very strong person, but I can feel myself starting to fall apart....
You are all in my prayers....
Siouxbee

Wow, it was great reading everyone's posts - I'm doing everything I can to take care of me. Jim is declining more mentally than anything and I'm going right along with him. I'm doing therapy on my knee to help the pain and have a knee brace. I was unable to keep my mental therapy appt. as there just isn't enough time to go around right now. I'm pretty much in the survival mode with Jim. He is trying to be in a happier place, but it's not working much. The breathing treatments seemed to have worked as his breathing is much better. I appreciate everyone's advice and concern - it was soo good to hear from those of you that continue to hang in there with us that continue to struggle with this horrid disease. I don't know how y'all have the strength or even desire to look at this site - I just know there is a special place in my heart for each and every one of you. Hugs to all of you....Paula

Hey Paula.

I sent you an email today.

Love,
Donna

Dear Paula,

So glad to hear Jim is doing a little better. I will always remember this saying...."God will either lighten your load or strengthen your back" You my dear have one strong back right now! I'll be praying that God will lighten your load. Hang in there.

Hugs,

Shelley

I KNOW EXACTLY WHERE YOUR COMING FROM!!! We are wearing the same shoes. I am trying to cope too it's been a lot longer, with a lot more surgeries and children who grew up only knowing this kind of life. But we are all the SAME!! It's very frustrating and heartbreaking. I am at the very exact page you are on. I know you don't know me but I do know my husband frustration and how that frustration is directed at you, the caregiver, It's a hard pill to swallow for all!!
Liz