I posted last summer about my husband who was diagnosed with normal pressure hydrocephalus. He had refused any further testing or treatment and just decided that he would be fine.
Well, he’s not fine. His walking is much worse. He barely can take two steps; he’s holding onto the walls and furniture. He doesn’t want to use any kind of mobility device. We can’t get him to use a cane or walker or a scooter. He sits in a in a chair in front of the TV almost the whole day. It has gotten better in the sense that I am now taking care of the finances, so that’s a problem that’s no longer a problem. He thinks the people on the news are asking him to do things and he gets very agitated if we don’t understand what he’s talking about.
Our primary care doctor retired, so I found a new one and I talked with her about what was going on with him. I needed a letter from a doctor so the power of attorney would go into effect and I needed her to evaluate him, and she agreed to talk with him. I was able to convince him that Medicare required him to meet the new primary care doctor.
Well, it was a big waste of time. She did talk with him about the continuing progression of his condition, but he said he was fine. She looked at me and told me to take him to a neurologist. We’ve seen two and they both agree that at the least it’s the pressure on his brain causing his symptoms, but there could be other types of dementia involved which they could test for with spinal fluid, but he refuses.
He’s stopped showering, shaving and changing his clothes and he’s started having both urinary and bowel incontinence. He tries to hide the “evidence”; we had to replace a toilet because he tried to flush his underwear down and I’ve found soiled underwear in the dresser and in the closet. I bought him Depends but he won’t wear them — he denies there’s any problem.
Yesterday was the last straw. The house was suddenly filled with a terrible stench. He had an accident on the way to the hall bathroom (I guess, since he denies there was a problem) and there was a trail of poop from that bathroom to the master bath, on the walls (because he can’t walk without holding on), the tile, and the carpet. I had to have a friend pick up my 2-year-old granddaughter because I was afraid she would touch stuff. My angel of a cleaning lady came over and spent a couple hours bleaching the walls, the counters, the floor, and the carpet where he walked.
I just can’t live like this anymore. I’m so angry that when he still had his wits about him he made this choice for us. I just want to take my granddaughter and run away. He’s only 74, so this could go on for years. And throughout all this he is verbally abusive to me. It is all too much to handle.
At the doctor's office, ask for the HIPAA Medical Representative form. He writes in your name, signs it and returns it to the reception desk so they have it on file. This allows his doctor to legally discuss his private medical information with you without his further consent or presence.
Go into his medical portal and send a message to his primary doctor. Give some background and tell them he needs a diagnosis of cognitive and memory impairment sufficient to require full-time advocacy so that your PoA can become active. This is what I did with my Mom's doctor, who did exactly as I asked.
Also keep a journey of his activity and take video so that he can't fool the doc.
Also, if you haven't already checked out support groups you may get good guidance from people who have been there and done that:
Hydrocephalus Association
https://www.hydroassoc.org
National Hydrocephalus Foundation
https://nhfonline.org
Hydrocephalus Support Group, Inc.
https://rarediseases.org/organizations/hydrocephalus-support-group-inc
Geaton told you,
"At the doctor's office, ask for the HIPAA Medical Representative form."
If this could be difficult, I would say that it's so he doesn't keep having to go to the doctors every time, rather than because it gives you power to talk about his health without his further permission.
It sounds as if he's too combative and too paranoid to do something that would help you, but he might do something that saves him trouble.
Next time he gets aggressive with you, you might want to call out the police. If they take him into the ER, you could ask them to do cognitive testing. Then, refuse to take him home because of his increasing aggressive behaviour. Especially with a child in the house.
Other people here know the correct way to go about this. (I'm assuming you're in America, whereas I'm in the UK.) Hopefully, someone else will give you this information.
I'm so sorry for what you are having to deal with. And I'm sorry that arrangements weren't in place before, although it's possible that your husband's brain was already too badly affected for him to make good decisions.
Wishing you well.
Your husband may be in denial about his situation, but you aren't, and someone now has to be the adult in this situation, so guess what? Tag...your it.
It sounds like he's now beyond being able to live in an assisted living facility, so I would start looking into the skilled nursing facilities in your area to get him placed in sooner than later.
And throw away ALL of his underwear and replace them with Depends. That way he won't have a choice but to wear the Depends.
I wish you well in getting your husband placed soon.
Throw away all of his underwear and only put depends in the drawer.
Next time he starts screaming, just calmly and quietly go in the other room and call 911 and tell them something is wrong with your husband and he needs to do to the ER. If you can get to the hospital, start telling everyone “unsafe discharge”
Good luck to you both!!
This probably sounds sneaky and makes you feel guilty. Please don’t. It’s literally for his own good, not to mention yours. You can’t handle incurable brain disease yourself any more than you could perform a surgery he needed. Convince yourself those are the same kind of thing, because they are.
Someone gave me the same advise to call EMT and they will get her transported and tell them not to discharge her.
How wrong was that? I called them and they came out. She was obstinate and she refused to go with them. I could hear her screaming from my line, "No! No! I'm not going no where! NO!" I had to step out into the hallway of my employment and I, too, was screaming and crying and begging for them to take her to be evaluated. I was tired of the calls about her falling and them not being able to lift her and pictures from family of her on the floor with her pants down her ankles.
The EMT guy told me, "Listen. Calm down. This isn't jail. Your aunt has her her rights. If she doesn't want to go, she has her right, and as far as we can tell, your aunt is fine and in good health."
Fine? Are you serious? Are you kidding me? How could they look at her say she looked fine when she looks like a skeleton? As far as Slartibartfast mentioning the poop trail, they (EMT) indeed saw it, as you couldn't miss it. Stains and trails everywhere, yet because she refused to go and be evaluated, they did not make her.
They left a bunch of brochures on aging and getting the help you need, which were useless and frustrating, because no one ever picked up the phone to assist.
I'm so sorry you're experiencing this. Me being out of state and trying to help someone who only wanted the help SHE wanted and not what she needed was only frustrating me more and making me ill. I wish you all the best. What I've learned is our health care system is horrible. You get no help when you really need it because they're overwhelmed, themselves.
You are in an extremely difficult situation. Safety first. How can you care for yourself?
*Do you need to or are able to live some place else? A safe place while dealing with the situation. Before leaving you could explain to your husband that you can’t live this way and need some space and time away
*Getting help for yourself is a priority!
Since you seem to be in AZ I know NAMI (National Alliance for Mental Illness) has offices where you can talk with a resource specialists. There are support groups as well.
Do you have a therapist or as someone suggested a support group for dealing with a family member with hydrocephalus.
*As someone mentioned you need to document what’s happening with recordings or videos and writing down specific incidents. This helps if you report to APS.
*If you were able to live apart from the situation, you could also call well care check to have them go and evaluate the situation.
*As hard as it is your husband still has a right to his choice(s). What is hard to do is respect him in those choices. BUT you still have choices as well. Your strong emotions you expressed can get in the way and that isn’t easy. (A therapist could help you work on this.) Can you come up with a plan in a rational and healthy way?
I pray and hope you can be safe and make healthy choices.
My thoughts are with you. The accidents and incontinence were breaking us. So much cleaning and work around that care and forgetting the briefs or overflowing. It was so tough. Suggest getting odoban in a spray bottle to help with the smell.
Seems like you and your grandchild are at risk living with him, especially if he is abusive.
I’d try the neurologist, or the neuropsych specialist once more with a written notice detailing his behaviors. Ask for help point blank. Tell them you are worried for his and your safety. Tell them especially about the hallucinations- the “instructions” from the TV. They should tell you the best route to take whether it be through calling 911, driving him to the ER yourself, or going through APS. I got the advice to call 911 for my LO with dementia and swore I’d never do that, (especially during CV19), but in the end it became very clear that my dad was in danger and couldn’t live on his own anymore with advanced dementia and hallucinations so I drove him to the ER where they were very helpful and called a memory care facility and got him admitted. Even after he was placed in MC, I still had to return for a 3rd lengthy neuropsych evaluation (in 3 years) before I could keep him in MC permanently. In Michigan I needed 2 physicians to sign for me to become acting guardian. Understandably, the ER doctor could not be one of the signers because he’d only spent 20 minutes with my dad. It is a serious matter to take away someone’s right to make decisions on their own. So I had his primary care doctor sign, and the neuropsych specialist. Even though the second neuropsych evaluation showed moderate to severe dementia, the doctor didn’t take away his independence until the 3rd test that showed severe dementia in multiple categories. I hope this helps. It’s not an easy process.
I can’t even begin to explain some of the behaviors of my estranged spouse, now age 72 with NPH. Erratic behavior started in 2022. His life and marriage were utterly destroyed. (You will find some of it a previous post of mine regarding strokes.) it took months and several evaluations by Neurologists, Psych and others. When I suspected NPH, it was always another month to see this Dr. or get this MRI done and follow up appointment etc, etc. He finally got to a Neurosurgeon and had the large volume lumbar puncture (spinal tap) (out-patient) and showed improvement with his walking based on pre and post walking tests done. The next step was to schedule a 3 day lumbar drainage procedure (in-hospital) which was getting scheduled. If that showed improvement then he would have been a candidate for a V-P shunt to relieve the condition. We were very hopeful finally at this point. He was all onboard to get this done. By this time he was barely getting around and barely able to take care of himself and had been incontinent for a few months. No one would diagnose him with dementia either; it was change of life adjustment, unspecified psychosis and finally delusional disorder but normal cognition. (He never changed his POA etc when we separated and still wanted to keep it the same, which is myself.)
Unfortunately and sadly he suffered a severe stroke less than 2 weeks after the first procedure and another a few weeks later. So he never made it to the next phase of treatment. He did not progress much in rehab over about 4 months and today remains in LTC. I can’t help but wonder if he had an earlier diagnosis he may have had a better outcome. I felt I had to push and push and advocate constantly. He can hold conversations and has recall even from a few days prior but does get confused at times as to the year, where he is or what he’s capable of doing.
Your husband might possibly be helped if he saw a Neurosurgeon and have a chance to improve. He could get better.
Get him to the ER - call local authorities if you must. Tell them that he is a threat to himself and others. Ask case manager/social services to help you have him placed into residential care. DO this today!
In addition, do NOT put up with this for another minute.
Call Adult Protective Services if needed. He is a threat to himself and others (including you). If / when he is placed in a hospital or care facility DO NOT sign any paperwork that says you are responsible for him. You might need to see an attorney to clarify this ... however, he might need to become a ward of the state. This is NOT a safe (nor obviously healthy) situation for you or your granddaughter - or anyone to be in / around.
Sorry that the MD was of no actual help.
My heart goes out to you.
Thank you for writing us.
We are here for you.
Gena / Touch Matters
The problem will be in how to get him there. And they also said it’s better not to visit him for a week or two. Any advice?
I feel such a relief and guilt because I feel relief but I think I’ll get over it.
They have the experience and would only advise you to stay away if it was in your husband's best interests.
If your POA is activated, but your husband is still both resistant and combative, you may need to be creative with the truth.
I'd ask for advice from the AL about ways to navigate the problem of getting your husband there, as well.
If your POA isn't activated, you won't be able to place your husband against his wishes. So, that is a priority.
I hope this works out for you.