I managed to find a whole afternoon to work on the website. Probably because I had to get up at 7 AM to get Sid to a 9 AM doctor's apt. an hour from here. Amazing what one can accomplish when one gets up early.
Anyway, I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog about my attempts to manage my husband's pain. Not easy when he doesn't remember how much what hurts when, and then only complains about it to me, not the doctor. Please post comments, suggestions, and your own stories here.
Just wondering if you had a pocket recorder..you could keep in your pocket..and record some of his complaints to play for the doctor... which would contradict his saying "I'm okay!" AS IF...(darn it) we always need to PROVE what we are saying.
I don't understand how he (or others with AD) could give you a pain number between 1-10. Not sure they would even understand what it means. And I do believe my DH has body parts in pain at various times, but the pain seems to lessen or worsen depending on what's going on at the moment, or who is here, or what we are doing.
I think this is just another thing we have to play by ear and if you have to cry wolf, you just have to.
I agree that there probably is a certain intensity in his pain for your benefit. He knows his friends and other outsiders will not pay attention or give him the sympathy you do. Think back to childhood: kids are really sick until they are around their friends, then they are much better.
My Dh will insist he is in severe pain even if it a simple thing like he bit his cheek. How can we gauge their pain when they can't. I know I dislike the stages of pain chart because unless I have the chart right in front of me I cannot tell you what the levels mean. There must be a better way.
I will admit that I cannot tell if my pain is a 4 or a 5 ....much less a 6 or 8. That's hard unless you've ever experienced a 10 in pain intensity....and have it as a 'go-by". I can say a low grade pain, .. a moderate pain or a really severe pain. but what's the difference in a 7 and a 9?
Joan, my DH does the same thing(acting like there is no pain when he is woth others) I can't even get him to answer the questions the dr. asks. I try to wait for him to answer but when he doesn't then I do and sometimes he will tell the dr. that isn't true. It reminds me of what it was like when we left our children with a babysitter and they acted just fine until we came home and then they started acting up. I wonder if instead of asking whether the pain is #1-10 you say is the pain bad enough to call the dr. or go to the emergency room(or something to that effect) I always think it is amazing that while my DH is with other people he isn't nearly in as much pain as he is with me. I hope I can just learn him well enough to know what to do. I agree though that I wouldn't want to be crying wolf all the time.
I agree it's hard to quantify pain. But think of asking a three year old "On a scale of one to ten how do you feel?" First of all the "on a scale" part - does he still understand THAT? Secondly, does he still count intelligently? Can he still tell time? If you ask him to put one cup of water into a four cup measure, can he do it? Can he weigh himself? Now he feels fine until he stands up and then it HURTS but he's forgotten that it's going to, so it's a surprise to him...
Joan, I have had those shots in my back and they did not help at all. At one time, the pain and numbness in my leg was so bad I could not walk for hours. I had to crawl into the house. So, it may be that the shots have not helped your DH. My pain is always less when I social with others, it comes back when I am home alone with DH.
I had to have a tooth pulled 3 days ago that finally stopped bleeding today and it's still painful. My DH found my care instructions this morning and thought it was for him. He was complaining about his tooth hurting and we needed to follow these instructions. It's funny that he can not remember anything for 2 minutes but there is nothing wrong with his reading. In the earlier stages he pulled this stunt on me. He knew I was upset and he did a Fred (the Sanford and Son TV series) fake heart attack. He was clutching his heart and stumbling around and it really scared me until I had him sit in a chair and he started smiling. He tried it a few more times and I ignored him so he stopped. By the way, he told me tonight he is not supposed to eat hot foods because of his tooth being pulled. Over the years I have had the epidurals for my back and they usually helped for awhile. They gave them in a series of three about a month apart. The last time the first one did not help and the second one really made my back worst so I refused the 3rd one.
Joan, I suggest you explain to the dr that Sid is likely unable to correctly use the 1-10 pain scale to describe his level of discomfort. I would discontinue asking Sid about his pain when he moans. Try to ignore it. He doesn't seem able to report it accurately and you are getting frustrated. Find out from the dr what dose of pain meds you can safely administer to him and how often and let it go at that. If he has a real pain emergency, you will know it.
Bama, Were your epidurals administered under x-ray control? That seems to be the key or else it's the proverbial "shot in the dark." I hope that you're feeling better and can get back to a comforting hot meal.
For people that can't understand and/or explain the pain they may have, there is a series of pics of happy and sad faces that some doctors use. Hospice uses these pics.
Sometimes I think they do cry wolf,they seem to like the attention.At times hubby will ask someone how they are,if they answer fine ,he says I wish I were. And away he goes.
Once again I find my experience with DH on a similar time line to yours with Sid. Same with the crying wolf fear. The 36-Hour Day calls the over dramatizing my husband does "Catastrophic Reactions." Is this what you are referring to? If DH stubs his toe it sounds like he fell and broke his leg. I used to jump right to all these situations and still do occasionally but much less so. One night about a year ago he was screaming in agony in the middle of the night. I think it was leg cramps but not sure now. I can't remember what all I asked him to try to get a realistic handle on the severity of his pain, but I think I did try to get him to answer the 1-10 scale and I didn't trust his answer. So I tried something new. I told him I was going to take him to the hospital if the pain was as bad as he was saying thinking he would then say no to that idea. But no, he said "okay." That's when I realized AGAIN that it was not possible to reason with him. I told him I would take him but explained that he might have to wait in the emergency room quite awhile and be more uncomfortable than at home. He recovered in a matter of minutes.
We live in a hollow (ravine) which really amplifies the sound from our back yard and I cringe whenever he's outside working and starts that screaming if he stubs his toe or can't the the water hose around a shrub easily. I'm always surprised the police or EMTs don't show up at our door. At least he's stopped calling me names I can't even bring myself tp say out loud. If he had stayed in that angry hostile stage I don't think I could have lasted this long. Now at least he is much more mellow except for those catastrophic reactions to the least little thing. Usually I can recognize the difference between something significant. I find if I wait a few beats (assuming I'm in another room) before responding he will stop.
Until you mentioned it, I had completely forgotten about the catastrophic reactions described in The 36 Hour Day. EVERYTHING is a big deal to him, whether it is pain or something being out of place in the kitchen. It does make it difficult to determine what is serious vs. nusiance pain.
I am going to take JudithKB's suggestion about the face scale. I had also forgotten about that until she mentioned it.
Part of the problem is me. No matter how long I am in this AD world, I still don't seem to realize the extent of Sid's deficiencies. It never really occurred to me that he wouldn't be able to judge pain accurately with the 1-10 scale.
Joan, my DH would have a problem with the NUMBERS on the 1-10 scale. The 36 Hour Day is a book I never actually read as in the beginning people said it would be too depressing, but I now use it as a reference book. It's so reassuring, as we all know, to know these various symptoms are normal (ha!) for the disease.
Everything is a big deal to DH also. We bought some new cutting boards on sale at a gourmet store over Christmas. He freaked when old one wasn't there. He MUST have a particular kind of coffee only available at one store so if we're shopping in Walmart we HAVE TO go to the other store just to get the damn coffee. He also MUST have papertowels which pull apart in short segments. I DESPISE SHOPPING but give in on all this stuff because I can't stand his tantrums. If he were my child people would call him spoiled, huh?
terry, when the nurse practioner at the neurologist’s office gave me that book I looked at it & thought that I wouldn’t really need it because my DH wasn’t exhibiting any of those signs(of course that was before I realized that I WOULD need it). His big thing now is he wakes up in the middle of the night & he has mucus in his throat. Of course he blames me for that & he gets very hateful asking me why I put the mucus in this throat. I finally realized that no matter how I try to explain it his brain just can’t process any explanation. Once he gets an idea in his brain it sticks there. He also makes a big deal about any aches & pains he has (this from a guy who NEVER complained about being sick before this happened. So sad.
Two months ago, my husband was hospitalized and I noticed that every room had a large dry erase board which listed the name of the doctor, nurse and tech for that shift, etc. There was also a pictorial pain indicator on the bottom -- showing faces in different stages of pain, from crying, grimacing, frowning to smiling -- would something like that be helpful? If you could show your LO the faces and they could point to the one that expresses how they feel, then jot that one down or somehow circle it. I know these pain indicators in the hospital were used for children and those who don't speak English. It could be helpful-- just a thought.