Rich is now having some problems with his speech and with excess saliva. He also has problems dealing with others reactions. He gets frustrated when people have difficulty understanding him. He swears we ask him to repeat things for our amusement. It seems sometimes he wants to complain more about the problems he has than accept help. Examples are his food, he has problems eating but only recently has he let me put anything through the food processor for him, Constipation, he wont take anything not specifically prescribed such as the order states one or two as needed he will only take one. And diet changes forget it. Pain he takes the minimum dosage and sits and holds his head. He is driving me crazy! How can I help him if he won't listen?

Oh dear julie,
you do have your work cut out.Rob went through a stage exactly as you describe and it drove me nuts.All i can say is that once he accepted all the different medications and found out they worked he was no more trouble,in fact he asked for them!!I got through to him by being very hard faced and telling him i didnt want to hear his moaning and groaning if he wouldnt take the treatment and advice offered.Then i just took no part in his medication or feeding and left him too it.Very quickly he started asking me for things and i gave them to him without comment,and he eventually thanked me and said he wished he had tired things earlier.When you have a difficult man to cope with you have to learn to play them at their own game.

good luck

love liz

Rough stage when they don't want the help but really need it. If you're using the food processor you could put benefiber powder in the food - it's tasteless. As for the pain, I don't need to tell you how important it is to get on a regular schedule and I had the same problem with Jack. I took him to a pain management specialist and let them be the messenger and he went on the fentenyl patch. It was much better to have long acting versus short acting, he was less out of it and his pain was controlled. Also the dose can be titrated up as needed.

What's his relationship with the hospice nurse or the doctor? Any support you can get there? Pick your battles but it is appropriate to try the we're a team doing this together and it's important to me that we're able to talk about how we feel and I find it hard to know that your symptoms could be better controlled because I love you ...or something like that. It's not blaming him just stating how you feel. Use I statements if you're going to talk to him. I'm sure he is frustrated but quality of life involved the whole family. Regards JoAnne

I talked to his doctor and his hospice nurse. Since he does take what is specially prescribed, they are both being very specific. He is now on MS Contin 45mg twice a day plus the Roxanol which he only takes if the pain becomes unbearable. Luckily the 45mg make that much less. His hopsice nurse just told him the max order for his conspitation is what he should take and hold if has loose stools.
She also got him talking so we found out he is scared that the pain will get much worse and the morphine will not help when the pain is at its worse or the doctor won't prescibe larger doses. He is used to being judged due to his past drinking and is fearful that they will think he is just after more drugs. We both tried reassuring him but I'm not sure we convinced him and I know where he is coming from. When he had a compression fracture of his spine and I finally got him to the hospital that was the emergency room doctors reaction. So this is really not an unfounded fear.

Question: would his high tolerence of alcohol in the past make higher doses of pain med necessary? I know it would if the tolereance was recent but it has been over a year.

JulieKay, no doubt the rest of this journey will have a good many challanges for both of you. I hope the Hospice folks will continue to be very honest with you. As to your question about alcohol consumption making higher doses of pain meds necessary- my "non medical" opinion is NO. The CANCER is making higher doses of pain meds necessary- don't let anyone lose track of what is happening to his body! When it came down to the final weeks, John and I had a very honest and difficult talk about pain virsus suffering and I agreed to insist on the maximum dose of morphine to stop his pain,even tho it seperated us from him mentally and emotionally. And his Docs and Hospice nurses agreed with the program. Don't let him suffer but be aware that you may have to be the judge of when the time is right for stronger meds. In our case, we had a morphine pump that John could self-administer until he got too weak and confused to do it and then either the nurse or I could push the button for him.[and there were times when we overrode the system on the pump] Please know that many caregivers here know what you are dealing with and we have an arm around your shoulder and are sending you strenght and love. Amy in the Ozarks

I am just passing this phase. My wife was very scared esterday beacuse i wsa so "out of it".

My hospice nurse and dr had me wtite down every med & food ( a timie line on when and what and where. Then hwe readjustredecall my pain meds. Now he has my pain under completecontrole and I have lpenty of break-thru meds if nedded.
a
Hospice will "run" meds to me if I need them The antianiexty meds keep my head focues correctrly and :there is NO PAIN":!

I accually feel GOOD. even thought I know what is happening. This is what hopsivce is for. So that you go out with no pain and anquish.

I too feared about running out of my medicinse. Tehy were delivereed b4 the dr laft the house with assurencnce that they had enougth to float thec"Queen Marry" if needed. This brought me great releif to me and even more to my wife.

I am in controll of mymedss, not my dr.

My wifes main job is that I get my 5 pillds every 12 hours on the dot and if, and i do say if it hurts, it is my job to take my break thru Iimmedeiatly as I feel the pain and that I am at a level 3 at the max for mote than a half hour.
A
This way "I am im controll 24-7 and I have no fear. Drugs are good when used for medical help. Not when they are being abused for a cheap escape from the reallities of life.

I was EXACTLY the same! My poor partner did EVERYTHING to try and help me. He did loads of research. & i just put on my stubborn head & said 'no - i dson't want it' or ' the doctors would have told me if that was anygood!' I thought what they said was gospel! What did Amir know?
Eventualy i got out of that mentality & thank goodness i did! I got so poorly & miserable, i dropped to 94lb and i f inally agreed that anything would be worth a go.
Unfortunately, it was nothing anyone said or did that changed my mind. I had to come to that point myself. & looking back i feel terrible that i threw back all the help my loved ones were trying to give me. For the doctors i was a model patient. For my family i was probably a nightmare!
Hopefuly he'll turn a corner soon.
All the best,
Michelle

Amy is right, it is not his past drinking that would cause him to need higher doses of pain medication it's that his condition has gone to another phase of treatment now that's he's on hospice. The cancer is causing the need for more pain medication.

Hospice staff understand the difference between an acute injury that will get better and a terminal condition. They will not judge him for past behavior. Also they have special training on pain management and they are used to dealing with titrating the dose upward and/or changing medication to ensure that pain is controlled. I have found that most of our patients have some fear about being in pain. It's very common.

He may not be able to process the answers he is getting right now but it's very positive that he is sharing his fears and communicating. As he sees that his pain will be responded to appropriately he will probably let that go. In the meantime it sounds as if you are getting good support as well from the hospice team and that's important too.

Please continue to let us know how you are doing.
Regards JoAnne