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