There are many directions that I could have taken with this particular blog post but I’ve decided to go with the fact that patients suffering from dementia are under treated when it comes to relief of pain.
My father was admitted to the hospital on Tuesday (FINALLY!…..and after having to literally beg the MD to do so). Along with his (now moderate to severe) dementia, he has congestive heart failure, neuropathy, cataracts, and hearing loss. His weight was up by almost 15 pounds (all fluid). He could not even stand up without assistance due to the amount of fluid in his feet and legs. They were huge!
Once they decided to admit him, they administered a diuretic (a medication to cause him to urinate and thus get rid of the additional fluid) and attempted to place a urinary catheter. (They weren’t going to place the catheter until I asked them “you would give a 3rd stage dementia patient who can’t stand up, who has more than 12 pounds of fluide to pee out a diuretic WITHOUT placing a catheter”? )
So they attempted to place the catheter – without success. When I re-entered the room, there was blood-tinged fluid all over the bed and my father was groaning, but not loudly and when asked how he was, he said “I’m great.”
Watching him, I could tell, he wasn’t “great”. I kept suggested that maybe giving him some pain medication would be a good idea. That didn’t happen.
After I left the hospital, the urologist came and attempted to place the catheter again. I was told that he spent a good 30 minutes trying and decided that a supra-pubic catheter was needed. A supra-pubic catheter is a tube inserted into the bladder through a small cut in the abdominal wall just above the pubic bone. I would call it minor surgery.
Did my father receive pain medications at this point? NO.
I called to check on him after midnight and discovered that pain medications had not even been ordered ! “He hasn’t been complaining of pain”, I was told. “Please work on getting something ordered for him” I said. Medication was ordered, but the dosage was/is inadequate. I’m still working on that.
According to Nicole DePace in her article “Recognizing Pain in the Hospice Patient With Dementia”, “Multiple studies have documented the under-treatment of pain in elderly patients in the community, nursing home and acute care settings.”
As family caregivers, you and I KNOW that complaints of pain are rare in those who suffer from dementia. There are signs and symptoms of which we all need to be made aware. My next newsletter will discuss these signs and symptoms in further detail -you may sign up for it on the home page.
Sadly, my father is often the subject of my blog posts for a reason. I have chosen to attempt to honor him by turning his messes into messages and his tests into testimonies, so that both elders and their caregivers will experience better outcomes.
If your care recipient is admitted to a hospital, nursing home or even just being seen by an MD, be extra vigilant that the subject of pain is addressed and handled appropriately.
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You are speaking my heart here. Over in over in nursing classes we are told that “pain is what the patient says it is” but, while the sentiment behind the phrase is noble – the idea itself totally disregards those patients whose words and thoughts don’t always “jive” anymore. It is frustrating to me to know that, even though there is abundant evidence that pain is undertreated (or totally ignored) in dementia patients, very few health care providers are aware of that fact. Or maybe they just don’t care.
Yesterday, a nurse’s aid actually asked my father what his pain level was on a scale of 1 to 10. Considering my father hadn’t spoken anything all morning except “Oh God” and “will you help me, please” I looked at her in astonishment and said “You can’t ask a dementia patient that !”.
I would hate to think that our profession doesn’t care, but I’m beginning to wonder. The R.N. who had JUST told me that my father pulled out his supra-pubic catheter during the night and noted that it had been 9 hours since he had received Tylenol with codeine, asked me….”Does your father have a chronic pain problem?” I wanted to say “what are you, an idiot!?!? You just told me he pulled out his catheter. If YOU pulled a tube (with a balloon full of water attached) straight through your abdominal wall, would you not be in pain??”
Perhaps our society is so worried about addiction that it has over shadowed the fact that pain medications were invented for a reason.
I am really glad someone recognizes the need for family members to watch what kind of care dementia patients are given. Too many times abuses or neglect on the part of the hospital or hospice is overlooked or not simply just not noticed. Unfortunately, this is an all too common problem.