Has anyone's loved one ever received this diagnosis, or tentative diagnosis? The neurologist said 88 y/o mom MAY be experiencing this.

Its SO hard for me, right now, to know how aggressively to pursue all the possible diagnosis, diagnostic exams, etc.

If we want to find out whether she has NPH, then we would be committing to many tests, and possible surgery, putting a shunt in her brain to drain excess fluid.

She had bleeding and don't know whether it was vaginal or urinary tract. So we've been to the GYN for a pelvic exam, the radiologist for a pelvic ultrasound, a urologist, and now he is suggesting a kidney ultrasound - just to "rule" out problems. She had a UTI, and the bleeding went away....So all this, to make sure. I heard tentatively through the urologist that mom had a slight thickening of the uterus. And that could require surgeries....

Mom has been through the medical mill this past year, with a bilateral knee operation and more recently a craniotomy. How much more can she take? How aggressively do I pursue all of this? I feel like its my medical responsibility to check everything out, and presume I am doing the right thing. But oh my gosh. If anything turns up with the neuro, or urologist, or gynecologist, it will mean more tests and surgeries, on a failing old woman, who never the less, still wants to live!

Well, I was almost sure mom had NPH. She has the gait imbalance, the dementia, and the incontinence. I was going to go back to the neurosurgeon who did mom's craniotomy, in just a couple weeks.

However, on New Years Eve, mom took another spill, had TIA type symptoms, and they took 2 CAT scans, 1 MRI, echocardiograms, carotid artery studies. Conclusion: No NPH. What they did talk about is what we already knew, but perhaps more so: atrophy of the brain, and small blood vessel disease from mini strokes, most of them not ever noticed.

They said mom has a HIGH fall risk (she had three falls last week) and a HIGH stroke risk. I knew that too. They know how concerned I am, and they are too - honest to gosh, I could see the look of sorrow for mom and me in his eye. "She WILL fall again, and there is nothing you can do about it." Apparently, she has brain issues in the frontal lobe, which is wear balance is controlled (I think all this is accurate.)

Recommendation: chair and bed alarms; up only with assitance. Once mom got back to the AL, at first she was OK with it - for the first day. She was getting a lot of help, and a lot of attention - plus, I had taken her out to a great place for lunch - just because "we" needed it!!!

But today, no duh, she is very agitated and angry. Although she has a high falls risk, she still likes to be able to get up out of her chair without an alarm going off and three aides rushing in! She can't go anywhere by herself, including something so simple as to pick something off her desk. THIS IS NO GOOD. THIS IS NO LIFE. THIS ISN'T EVEN HEALTHY, TO BE SO SEDENTARY.

Its nobody's fault. Its just everyone's attempt to make her as safe as possible. But its not safe to sit all the time, and she certainly wont' be happy.

A geriatric nurse coordinator told me, "You can't put her in bubble wrap!" And another comment, that came to me in the middle of the night - "Right now, quality of life matters more than quantity." I think she is right.

I have talked with my husband, and sisters, and some of the staff at the AL, and we may give mom her freedom tomorrow, after we sign some kind of "Shared Risk" papers. The woman at the AL said some patients do this when the doctor has recommended pureed food, for maximal safety after a stroke, to prevent chocking. But again, some elders find that intolerable, and would rather take their chances.

Take their chances. Do you know how scarey this is for me, to give mom her freedom to walk about ad lib? It will make her happy, but it will not make her safe. Or I could make her safe, but not happy.

Part of me feels this is the absolute right thing to do. Part of me thinks no, but most of me thinks yes.

Any comments, thoughts, solutions???????

I'm still not sure, Madamepsi, what to do. My mom's neurosurgeon (the one who did the craniotomy after her fall) is the one who noticed some swelling on the brain, but it must not have been so pronounced that he was SURE she has this. He said to bring a former CAT scan of her head to her next neuro appt. and he can compare old scans to new scans, and then we can decide.

I didn't do anything sooner, as we've been trying to rule out other medical issues (bleeding) and going through kidney ultrasounds, uterine ultrasounds - Thank the Lord, no cancer - just polyps. But to call him if she starts to bleed again, and she did!

I think I will get the old scans, and check into this. My Son in law is a fourth year medical student, and he came home with my daughter for Christmas, and he said, "Do you think your mom could have NPH?" I said, "Funny you should say that."

I just don't know if I want her to go through another surgery, though!!!! She will be 89 next month - and I think I heard that its only 30% effective?

My mom is still walking, but I am also having her go to OP PT - to keep up her strength.

Keep me posted on your thoughts and what you do. I'll share mine with you, too.

Very interesting about NPH. I

Dear Javajunkie,

I am a new caregiver ... Mom took a spill in August and since then has manifested confusion, dementia and incontinence. She can hardly walk. At first I attributed this to the lack of excercise while letting her tailbone heal. The dementia came on literally overnight!

I have seen a couple of public information commercials on tv about NPH, and it soooo looks like my Mom.

I, too, wonder how strongly to pursue this. She is 85 and very frail, I don't even know if she would survive a shunt surgery. Yet, if NPH is the cause of her frailty ...

Oh my which came first, the chicken or the egg.

Have you checked out the website:
http://www.lifenph.com

That's where I found my initial information. Mom's doctor is going with the odds that Mom might rally around with more consistent ambulation. I am taking my two week vacation to see if I can make a big difference by working with her during the daytime as well as night care. However, if I don't see a certain small improvment, I might consider consulting a neurologist specializing in NPH.

Supporting you in your mutual quest,

Debbi

Java Junkie, A very tough position you are in.If you believe the end justifies the means then you know what needs to be done.What will make you feel the most compfortable doing.SO.
MANY IFS WHEN DEALING WITH SUCH EXTREME MEASURES.Do you believe mom can endure any further surgeries?These are the most difficult decisions we are faced with.What does the doctor say and do you value his opinion?