Caring For Aging Parents Support Group
Caring for aging parents can be a difficul time as we become the caretakers for our parents. This broad responsibility can encompass such services as assisted living, adult day care, long term care, nursing homes, hospice care, and in-home care. Whether you have just started caring for your parents or just need a place to talk, we're here.
I've never had to deal with this so I'm throwing it out to everyone here....
Couple of weeks ago my mom (86) started saying she has a belly ache. It got bad enough that she called me at 2 am to come pick her up and take her to the ER. We spent a long time there, being sent home with a diagnosis of acid reflux burning her stomach, throat and tongue. She got some meds but a couple days later we repeated the process. This time she was sent home with an inflamed pancreas. See a Gastro. doc for a follow-up. These trips to the ER are becoming way to common now. She has seen her PCP, a Urologist and the Gastro. doc and nobody can find anything wrong. After the 4th or 5th ER visit, she was admitted and given every test under the sun. After all the test results came back - the hospitalist discharged her with a paper saying they could find nothing wrong. She has the insides of a young person. And yet she still finds things to complain about. Belly ache, burning from the acid relux etc. I'm thinking she enjoys the attention. How do I break this ER habit? How do I get her to understand that there is nothing wrong with her? I'm sure she has gas pains. She's 86 and lives alone. Drives, plays cards with friends and basically is happy and healthy. Until she gets it in her head that she's dying. Thoughts? HELP! Sorry this is so long :(
Couple of weeks ago my mom (86) started saying she has a belly ache. It got bad enough that she called me at 2 am to come pick her up and take her to the ER. We spent a long time there, being sent home with a diagnosis of acid reflux burning her stomach, throat and tongue. She got some meds but a couple days later we repeated the process. This time she was sent home with an inflamed pancreas. See a Gastro. doc for a follow-up. These trips to the ER are becoming way to common now. She has seen her PCP, a Urologist and the Gastro. doc and nobody can find anything wrong. After the 4th or 5th ER visit, she was admitted and given every test under the sun. After all the test results came back - the hospitalist discharged her with a paper saying they could find nothing wrong. She has the insides of a young person. And yet she still finds things to complain about. Belly ache, burning from the acid relux etc. I'm thinking she enjoys the attention. How do I break this ER habit? How do I get her to understand that there is nothing wrong with her? I'm sure she has gas pains. She's 86 and lives alone. Drives, plays cards with friends and basically is happy and healthy. Until she gets it in her head that she's dying. Thoughts? HELP! Sorry this is so long :(
She's 88. It's doubtful her innards are in perfect health. What the medical profession means by "nothing wrong" is "nothing upon which we need act" or "nothing actionable" (N/A in old shorthand when I was a pre-med nerd a couple decades ago). So, based on that, the fact my mom was a nurse 40-plus years and talked medicine with me b/c everyone else got grossed out (even when I was 5, LOL).... And the fact my dad died of GI cancer twenty-odd years ago?
1. Get copies of the tests, and summaries of the tests. Read them carefully. Note everything yourself, separately, on a list of questions for GI specialists or even primary care docs or, yes, ER docs. E.g., my mom's recent abdominal CT came back showing a small liver lesion, probable cyst. Since she had a brain tumor, and those are rarely primary cancers (and hers is *not* cancer, thank God), I asked about that. They did follow-up (ironically, abbreviated F/U) and determined it was a cyst, already healing itself. This left us with neuromuscular causes for Mom's flank pain (armpit to hipbone is flank in medical terms, not "side", which refers to left or right of midline, that is, the belly-button-sternum-between the eyes line).
2. Sorry if that sounded preachy. I translate Medical a lot for my family. Ironic, as my Hubby's dad is an MD, but that stuff skipped Hubby.
3. Get a psych consult, by requesting one in the ER, and mention the following: Factitious Illness Disorder. This is a class of disorders with subtypes that range from "Loves Medical Attention and Lies to Get it" to "Self-harms to Get Medical Attention and Sympthy" to "Harms Others to Play Hero and Get Sympathy and attention" (that last is Munchausen Syndrome by Proxy, which my gran had, and she killed 4 of her 11 kids, which is how I know about any of this stuff). By getting a psych consult, you accomplish two goals: A. Your mom gets evaluated and B. Your mom gets possibly referred for a neuro consult.
4. Diary your mom's trips to the ER and see if there's a pattern to them, in terms of what days of the week, what she does/eats that day, and don't ask her vaguely like docs do. You're the kid. You can be more specific. Docs ask "Havey ou eaten anything different lately?".... Which to some peopl emeans "Did you eat toxic hemlock?" and to others means "Anything you'd never eaten in your life" and so on. Whereas, as the kid, you can ask, "Mom, did you have that pizza the doc told you to not have? When?"
All that said? Social contact for your mother outside the medical profession where she feels like she's getting attention for some special skill or trait. Acknowledgment is a big boost to th psyche.
Also, a system of daily check-in calls (this allows her ot feel taken seriously/loved, and you can track her complaints), even if they're five minutes or less every day (did this with my mom, her mom, etc., seems to work for our family).
Take, leave, whatever, but know you're getting supportive purrs from the puma.
You can do all the stuff Leo suggests if you like but then you will never get away from the doctors and hospitals!
If indeed she is functioning well just start saying NO and meaning it!
Is there some history of someone with a GI problem dying of it, in your family or her circle of friends?
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That's why I advise: Get the records, look for patterns, before assuming it's "willful behavior". If it doesn't fit your mom's overall personality and "her-ness"? There may be a reason beyond "annoy adult child into insanity for the fun of it". (I won't say that doesn't happen. I've met my dad's family. Yikes!)
Healing and soothing vibes.
They might not like to show weakness of any sort for fear of losing control of their lives.
Good luck and let us know how it goes
Ironically her PCP wants her on Zoloft but she refuses to take it. One of the hospital docs told her not to take it, see a shrink instead. She was given a short psych eval and was found to be perfectly normal in the head, as the doc put it. She's a wonderful actress when she wants to be. She needs the anti-depressant.
Leo, you are so very blessed that the brain tumor was found before it took your mom. This scares me too, bc my mom has never been a complainer. This is so out of character for her.
Thank you to everyone who's been so kind to share your experiences and advice. This isn't your first rodeo obviously. Hopefully things will calm down now. And blessing to all of you as you face your own problems at home.
Note: GI death... Pancreatic Cancer *is* a GI disease and is fatal. Lost my dad to it 22 years ago next weekend. His symptoms began with peptic ulcer, hiatal hernia, acidity, and general upper GI yuck... but never seemed to resolve. They found a blocked duct from his pancreas, installed a shunt, and then? He was okay for maybe a year before they did a gallbladder removal. He never quite seemed to heal from that, and the cancer finally was dx'd 10 months before he passed. The word "Pancreas" panics th ehe** outta my family, too. Big hugs.
Also, perforated ulcers can be fatal, bleeding ulcers, esophageal rupture, do I reallllly want to keep going, no, I don't, never mind... Yes, your GI issues can kill you. *sigh* What can't?!
Point being (sorry, I ramble when tired, which is all the time lately).... So stomach-area pain? May have your mom convinced she's heading for the same end as your father. It's not a rational response, but *fear* is by nature not rational.
It seems like a lot, but just keep a small notebook handy and when you have your mom on the phone or are with her, jot down the date and a few notes on what "sticks out".
Best wishes to you, keep us posted.
I suffered through many years with my grandmother making herself sick on every holiday so we'd spend it in the ER. The last time she did it, we brought her there, checked her in and left her there. She wasn't a happy camper but she wasn't causing this kind of turmoil on every holiday or any other day for that matter. Sometimes it amounts to attention seeking and other times, it's a misdiagnosis. I'm thinking it could be the first.