When I saw my dh at the facility last Saturday - he looked at me and said "I hurt.".
Of course he did not say anything else and did not give me any more clues. He doesn't talk often and if he verbalizes he doesn't often make sense but when he does make sense it is usually right on. He is in stage 7.
I talked with the aids and the nurses and they are on the alert to be note if there are any differences. They can start giving him morphine for pain but I want to hold off on that because he is going for more Botox next week and I don't want to start giving him morphine if the Botox takes care of the hurting. His hands are a lot more contracted and it may be aggravating his arthritis. If that is the problem, then the botox should take care of it.
Of course, there is also a chance that it was just words............ but still I am concerned. I want him to be comfortable and not in pain.
therrja, maybe just a bit of painkillers to hold him over til they can get him in for the botox? a week is a long time to be hurting if its true. i would always err on the side of caution so hes not suffering but thats just me. i hope he gets some relief soon, i know how hard it is to be worried. divvi
I fully agree with divvi, if there is any chance that he is really in pain, it would be better to err on the side of caution. It would also ease your mind.
t herrja does it have to be morphine? Would tylenol work? When my husband started crying his hospice nurse and I couldn't figure out why. On the chance that it was pain he was given tylenol twice a day for a while. Never did figure out what was going on and he appears to be comfortable now. It is a helpless feeling when we fear our loved ones are in pain but can't tell us.
He is already on Tylenol once a day. I was thinking about asking them to up that in the meantime. He has always had a very high threshold for pain so if he is complaining, it may be very bad. My concern with switching to morphine is that any medication change seems to make him more sleepy and less responsive. There isn't much left to him now, do I just blow that away with more medication?
therrja, all dementia patients are chronically under-medicated for pain. I can't imagine what one dose of Tylenol a day could possibly do for anyone, except maybe at bedtime to lower light pain enough that someone could get some sleep. It would be useless for anyone with arthritis.
you say if hes complaining he may be in real pain. in my book i would do whats right for my spouse and ease any suffering at any cost. loss to my own needs would have to come secondary and at great distress of course- the pain meds can be adjusted to something less when hes up for the botox. til then i agree with starling that tylenol would do very little if hes in severe pain. we have to keep in mind to advocate whats in their best interest at these late stages. so sorry therrja. divvi
Starling - thanks for reminding me that they are undermedicated - I had forgotten about that one.
Divvi - it is okay to take a firm stance on this one. My priority is to keep him comfortable. The ramifications of the pain meds are what makes it harder. He's already sleeping 16 hours a day - how much more will he sleep with pain meds - will he be too sleepy to eat - he has been terrific up to this point about eating all of his meals - he is now on soft foods will stronger pain meds make a swallowing more problematic than it already is. I'm making the assumption that it is a combination of arthritis and the contractions (that being the most obvious cause), but what if it is something else? Under normal conditions he would always have preferred being in pain to being a zombie from meds but now he is not "normal" any more.
So, next step will be to talk to staff and doctor for additional pain meds. This will probably mean being pushy to get it taken seriously but I think I am up for that. Does the well for advocacy ever run out - I hope not cause I am digging awfully deep into it.
I would say you need to look at other signal to see if he is in pain. What are his facial expression? Does he make sounds like something is sore? Moan? Does he move real slow or jerk like something hurts?
I know from taking care of my Dad, that the advocacy only ends with their last breath, and yes by then you are exhausted. It was however, an honor to advocate for such a great, great, man.
moorsb - good question. The only thing that causes him visible discomfort is trying to look at the pinkie on his left hand or open that hand - then there will be a grimace on his face. He had a pressure sore on the tip of the pinkie earlier this year so I did check it. The flesh looks delicate but I see no sore (unless something is going on under the skin that I can't see). He is very good at moving that hand out of the way so it can't be looked at. He is also still physically very strong for the stage he is in so I am not sure how sucessful the aids are at looking and opening that hand. I cheat to get it open by using lots of kisses. I am also very persistent and just keep at it until I get it open and can check it.
The only other "symptom" is that lately he has seemed very sad/down. His energy level is way off - this could be the result of pain or something else is going on. I don't have a good handle on that one yet.
therrja-- Bottom line, in stage 7 he still managed to tell you he hurts. He has a high pain threshold. Advocate for him. He needs pain relief now. Adjustments can be made. when/as needed. If he were the cry-baby type over ever little bump and wrinkle in the sheet, you could justify baby steps in addressing his discomfort. That is not the case.
Lois, he is in stage 7 and in a facility. They handle hospice care right there. He is on comfort only care.
I find it amazing that he was able to pull it together enough to even tell me he hurts at all. Just wish some more information had come along with it.
Today is a good day for me to visit him as I can go during the day and get a better assessment on him for myself. There are a couple of nurses that work during the day that listen better than some of the others. Time to get pushy again.
Update. I talked with the nurses and the Tylenol has been upped to 3 x a day. He seems to be responding to that. The aids have noticed that his hands are not quite so stiff and he is moving better.
His doctor's appointment is tomorrow and I will meet him there and discuss pain management with the doctor.
While talking with the nurse she introduced me to a fact that is difficult concept for me. She told me that as they get further and further into the disease that the options available to manage pain for them become fewer. No, I did not want to hear that but am very glad she told me - it will help me to prepare for the next steps in pain management.
therrja i am so glad the extra meds are helping him somewhat. good luck with the dr appt to get the pain managment issues settled. i am sure they will be able to modify it to give him some relief., divvi
therrja-- I may be wrong, but somehow I get the impression you think the nurse meant the options available for pain management become fewer as in less being available which can do the job effectively as he progresses, implying that he will suffer. The choices of what will work may become fewer and may have secondary effects to be considered, but his pain can be managed effectively. Your main job, IMHO will be to see that it happens. there is no excuse for undermedicating for pain.
carosi - sorry - no she meant that the options to handle symptoms for pain that do not have the side effect of knocking them out or taking other capabilities away from them are fewer. My priorities are keep him comfortable first and then try and keep him comfortable without taking any of his few remaining abilities away. He reacts so strongly to medication now, that it is a trial and error to figure out how much is right for him and finding the balance without under or over medicating him.
It took me a while to learn that I have to reiterate my priority to keep him comfortable anytime a conversation about changes in him and for him come up to the staff, doctors, etc. While it is clear in my head that that is the priority, they may/or may not remember that. I also find that by stating that very clearly at the beginning of conversations with them that I get better and clearer answers. I will also ask about the pros and cons of a particular course of action to help me make better decisions for him.
I agree to do whatever is needed to keep them comfortable. The last few months of my BIL life, he was in pain. Almost everywhere on his body was bone on bone so moving was painful. He had vicoden for pain yet my sister refused to give him more than one pill a occasionally for fear he would become addicted and the constipation it may cause. She gave him a Tylenol in the morning and hospice talked her into giving him a vicoden at night. My comment to her: who cares if he becomes addicted. The man is 85 years old, dying and in pain. Make him comfortable!
We went to the doctor today and he got his botox treatment. He was terrific about it. I managed to make it through without passing out or throwing up so I did good too - this type of thing is not where I shine.
I did however, ask the doctor about pain the pain and he said he should be taking 1000 mg a day. The facility will be upping it to that. We will also be increasing the bacofen (sp?) to help relax the contracted muscles. They are also getting a PRN for something stronger for pain if and when he needs it. Based on what I am seeing, I think that this will work for now, it also sets him up for handling the spikes he might have for pain.
The nurse on the floor today and I talked about the advantages/disadvantage of having a PRN. She said it is nice but giving it depends on the interpretation of the nurse on duty and not all of them perceive things the same way. If I find that he is still uncomfortable, I will be asking to make the dosage permanent.
Therrja, that's a good point the nurse made about the PRN. My husband was given a sedating medication (that increased his risk of falling) by a nurse who charted he had refused his bath and threatened to lock his door. Since I am there for every bath night (and have been there since July when I saw that they were leaving wet dirty dressings on him for two hours after his bath before changing them), I knew that this was untrue. However, you seem to have a good grasp on the situation, and it looks like all will be well.
Therrja, Great Job! . Baclofin is a very good anti-spasmotic. If in the future you find that the spasms override the Baclofin, ask for Valium. I live with painful spasms in my back due to 4 bad discs and at times Valium and ONLY Valium can handle them. Keep up the good work, you are a terrific caregiver! Arms around, Susan
Interesting that you talked about valium. Before going to Botox doctor, he was given some valium to help relax him so the shots could be put deeper into the muscle where they do the most good. He was very, very relaxed after that and nodded off some. I noticed I could hold both of his hands and he didn't have his usual death-like grip.
I am keeping the idea of valium in small doses on the back burner if it seems like he needs more. It takes up to 2 weeks before the full effect of the botox wears but we should start seeing small differences over the next few days.
One of the nurses complimented me a while ago about how I was very good at keeping my expectations realistic. It was a very nice compliment but it isn't easy to do. It isn't always easy to weave my way through the system and be insistent that he gets what he needs. Sometimes accepting the changes is even harder to make happen. Some days I can only keep going by repeating - what is right and best for him.....what is right and best for him.
Thanks for the input everyone - it helps a lot being able to think/talk things through with others in the same boat.
This is really tough to determine. I would also look for facial expressions and also reactions when he is moved or moves on his own in some way. Are there any little bruises that maybe he could have got by bumping something? Is there any chance there is a little arthritis somewhere that may be bothering him. I have a hard time finding out how my husband feels, though he is early in this disease process. However, my experience with my mother when she suffered this disease was that when she moved she would moan ( she had lost vocabulary) and grimace. I hope this helps a little bit.
Mimi, good suggestions. Both I and the aids/nurses at his facility have been watching his facial expressions for clues. So far the Botox treatment and increase in Tylenol have helped a lot. He is not longer vocal so that is not a clue either. Right now we seem to be moving along at a steady pace on the journey. The pain is under control. I suspect that as he gets closer to when the next Botox shot is due that I might see more evidence of discomfort.
One of the things I have learned about this diease is just be cause the "always" were a certain way, doesn't mean that it is still true. He never liked to see movies twice - after AD started, we could watch movies twice and he would enjoy them just as much the second time. He never watched football. After AD and placement, he would watch football. He always had a high tolerance for pain. This one I don't know the answer to and that is the one that makes it difficult to figure out what is going on and how bad it is.