First time posting for DH has dementia with onset of hydrocephalus

GloriaByington

Hello all. I thought I posted a week ago but does not show up on my discussions. So here goes. My husband is 82yo, diagnosed w/dementia and onset of hydrocephalus. He has progressed quite a bit within the last 6 months. Neurologist does not want to give me a stage let alone see him, just keeps prescribing medication. Am not ready to place him in MC as of yet. We have a p/t caregiver who has helped quite a bit. He has lost the ability to make sense when he speaks, difficulty taking his meds & swallowing, no memory left whatsoever & does not like to shower. Have him in a wheelchair as he is not steady on his feet due to hydrocephalus. The Dr. did recommend ongoing Physical Therapy & Occupational Therapy. Physical Therapy consists of walking w/a walker for a few mins, 2x/week. Occupation Therapy is no longer working. Does anyone have experience dealing w/dementia and onset of hydrocephalus? Wondering what I can expect in the near future. Thank you for reading my post.

Iris L.

Is this normal pressure hydrocephalus? Has he been evaluated by a neurosurgeon experienced in NPH?

Iris

Denise1847

NPH can be fixed by a surgical procedure via a shunt. I am not a doctor, but it may help to get him to a neurosurgeon.

Ed1937

I remember this thread. No telling why it doesn't show up for you.

Ed1937

OK, I got it. It doesn't show up because the thread was started by me. Sorry for the confusion. https://alzconnected.org/discussion/66771/new-thread-from-gloriabyington

M1

Welcome to the forum Gloria. He obviously has very advanced dementia and if he is having swallowing problems that bodes very poorly. Normal pressure hydrocephalus can cause cognitive problems, along with wide-based gait and urinary incontinence, and can sometimes be relieved by placing a shunt in the brain venticles-there are threads on the parent forum from one member (anonymous123) whose mother has been evaluated and is getting ready to have this procedure. The problems can improve if caught early. But not all hydrocephalus responds to this, iris is right that evaluation may be warranted or you need to at least ask the question. If his dementia is long-standing and he just now has developed hydrocephalus as a new finding, it is less likely to be NPH that would respond to shunting. Hope this helps.

Anonymousjpl123

@GloriaByington I’m so sorry you are dealing with all of this! It is a special kind of awful, this NPH with dementia, because it’s so so complex, but so worth exploring. I worked with multiple neurologists to get a diagnosis, experienced rapid progression of symptoms (though my mom is not yet where your husband is, she is 82 and her decline was STEEP after my dad died). She is now in memory care because she wasn’t safe in AL and I can’t take care of her or provide what she needs in my home. So I’m 10 minutes away, which is many ways is even better.

What I have learned is that if you keep asking “what about the NPH,” you will find people who know the answer. The Hydrocephalus Association is also a great resource (though posting on this site has been my real salvation). The process - from figuring out there was a problem, to the diagnosis, to deciding on treatment - took about a year and a half.

If you can find a neurologist specializing in NPH, they can talk you through all of it.

NPH symptoms are often known as the 3 w’s: wet (incontinence), wobbly (gait/walking issues) and wacky (dementia). Shunts generally helps most with the first two w’s, less with cognition, usually either because brain damage has already been done or there’s mixed dementia.

That said, there’s another woman in my moms MC facility whose mom has NPH and dementia and they are choosing a much more organic, hands off approach focused on her comfort and care. There is no right way. I wish the best for you and your husband. Hope this helps.

GloriaByington

https://alzconnected.org/discussion/comment/186477#Comment_186477

Normal Pressure & diagnosed by Nuerosurgeon & Neurologist via PET & MRIs. They tried the lumbar puncture, did not work. Drs say he is not a suitable candidate for the shunt since the lumbar puncture did not work.

GloriaByington

My DH is now feeling pain all over his body (his wails when we try to change him suggests it.) He has not fallen but is very sensitive to touch & room temperature wipes which we need to clean as needed. He does not want to shower. This evening, he is unable to get up from the bed and wails when I try to help him get up. Has anyone experienced or is experiencing the "pain" issue? How do you deal with it? Thank you for being on this site as I've learned so much.

ThisLife

On the thread "Constant Sleeping" tktyboo posted a link to a Tam Cummings video about the stages of Alzheimer's. When Ms. Cummings talks about Stages 5-7 has information about signs of pain in a person with AD and caregivers advocating for them.