Need A Bigger Boat

wose

I’m counting down the days to our first actual Dr. (neurologist) appointment. Am I putting too much stock in this first appt? Two weeks today. Am I going to get any actual answers? I fear not. Does anyone know what I can expect at this appt? This morning about 3am we apparently had a pinhole pipe leak in the game room ceiling. He came storming in the bathroom around 7am and told me not to flush the toilet cause the water is off. He said don’t you remember that water coming out of the ceiling last night. I was like what water and I actually checked my watch thinking I was losing it, but in fact I was in a deep sleep. He went on in detail about how I washed all the towels and we moved furniture all night. All of that happened ~~but I wasn’t part of it. There was such hate in his eyes and that’s the way it is every day now. He isn’t physical with me but the venom in his eyes and our broken doors make me fear that I alone won’t be able to see him through this. I break myself every day trying to accommodate his every need. After all the chores he wants to be out of the house every day. It not sustainable anymore for me. How does one balance the needs of a loved one whom they know doesn’t have long without giving up yourself, most especially for someone who only has disdain for you? I know I know it’s the illness, but it does not feel that way. Thanks for listening 💙

DCCEPEK

Please if you fear for your life call 911. Have them place him and refuse to pick up. For you own good. Make a move for a better tomorrow. Sadly I'm awaiting stage 8 wishing it was over. Meds helped with violence but life go on. Please take care

jsps139_

I know that anger and look of absolute hatred. My husband had those episodes for days and sometimes weeks, and then no anger issues for months. It is so hard. I asked his PCP for a med that I could give him only when I saw an episode coming on, but not something that had to be given daily. He prescribed Lorazepam as needed, and it works very well for him. I can tell when that hateful look just begins and I give him 1 Lorazepam and tell him it’s his BP pill. He is calm in an hour. He still has them, but not near as often.

Our first neurology appt went very well. The doctor gave him a lot of verbal and written tests concerning memory, and diagnosed him with Alzheimer’s. Then he informed us about possible medications, which we decided against. The doctor was fine with our decision.

I agree that if you are afraid, call 911. That is no way to live.

Jgirl57

I too remember the venom eyes. We don’t have that anymore but it was the first couple of years. Be sure to tell the neurologist about the behaviors and maybe they can also get a referral going for psych./medication. You might not get any earth shattering new information from the neuro appointment, but is a start . Do not hesitate to ask questions or write questions down ahead of time . I take full advantage of the medical portal system and often get answers in a day or two to any questions i submit. Best wishes and go for an ice cream or coffee afterwards together and don’t push your loved one to talk about the appointment .

Pat6177

You might consider taking a video of some of his behaviors for the neurologist.

M1

Agree entirely wose, video and/or audio recording of some of these episodes might be helpful. Tell his docs that this is happening, by phone call or in writing. As ive said before, i personally would not wait for the neurology appointment. I think he needs hospitalization and inpatient treatment to protect you.

That first appointment may or may not be helpful. Further tests will probably be recommended. Im worried he will be angered by the appointment and will either refuse to go at the last minute or will take it out on you on the way home. Have you thought about that and what a contingency plan might be?

wose

Thanks everyone. It all happens so quickly that I forget to record. Video probably won’t work. And I will send something through the health portal. It’s all so hard to keep up with, especially on 4hrs sleep each night. I’ve lost 40 lbs and I just feel so defeated. You might be right M1, he is I’m sorry to say a bit of a male chauvinist and unfortunately his doctor is a woman. He already told me he will never go back to “that woman” meaning his PCP who referred him to a neurologist. I could see a male second opinion in our future. I never thought about the ride home.

charley0419

till this day my wife says after each appointment “I’m never going again”. She hates going as she hates the clock test and says there’s nothing wrong with her. Have appointment next month , got great advise from group saying “ don’t tell her of appointment till you go”.

harshedbuzz

@wose

I am so sorry you're dealing with this.

It's hard to say what will happen at the appointment. Dad was seen at a multidiscipline memory center after a hospitalization during which he was given a tentative Alzheimer's diagnosis. I was able to convince the chief resident before discharge to start dad on a low dose antipsychotic before discharge. Dad had been agitated in the hospital and required a sitter.

The first out-patient appointment was mom and me reporting symptoms and history while dad did cognitive tests with a neuropsych in another room. After, we all met with the doctor to review the results and schedule more testing and a second appointment to reveal the diagnosis and "treatment" plan. We were fortunate that this neurologist reiterated the attending's "no driving, no investing, no alcohol" edict.

We added a geripsych to dad's team for medication management. I suspect this would be a good idea in your situation. I expected dad to resist, but I posed it as a second opinion because I wanted to make sure he was getting the best possible care and maybe get his car back. That doctor had a different routine-- mom and I got no private time and he engaged dad rather than us. And dad could showtime like a trouper. I used to sit behind dad (at all appointments) and non-verbally signal when dad was conflating or out-right lying. Good docs will look for this.

If the PCP didn't do any preliminary evaluating-- bloodwork to rule out conditions that mimic dementia and a imaging-- it's likely those will be scheduled and maybe a neuropsych workup-- before you get a diagnosis and plan forward. I would be prepared with a list of concerns you can discretely slip to be read at check-in. If there's a portal, that could be used as well.

My dad was a volatile misogynist and mom was very resistant to having him evaluated, so I spent a lot of time worrying that his verbal aggression would morph into something physical. He once got angry with my DH after the rest of us had turned in for the night and punched him. DH is a full foot taller than dad and 20 years younger, so it was more laughable to walk in on dad swinging away while DH held him at bay with his 38"-sleeve-sized arms. She assures me he never hit her, but she's not a reliable reporter and was very protective of him.

In your shoes, I would make sure to anger-proof the house. I got anything I could imagine being weaponized out of the house locked down. Guns first, obviously. Also- knives, tools, golf clubs, cast iron skillets and small tables light enough to be thrown-- dad was a thrower and smasher when angry even before dementia. Medication to dial back his aggression and validation practices allowed mom to keep dad at home until 2 months before he died. We were hearing a lot of murder-suicide ideation, so we had him placed within the week because I'd created a solid Plan B just in case.

@LadyTexan is someone whose DH could be dangerously aggressive as a result of the disease and managed the situation with both compassion and pragmatism. This is a post she made a while back.

• LadyTexan Member Posts: 787
• 
  

•  Member
• April 2021
• Hello Lp57$.
• Please, please talk to your husband's doctor and tell the doctor exactly what is happening.
• After DH was diagnosed, he became aggressive, threatening and verbally abusive on more than one occasion. It was very scary; I was shocked the first time it happened and probably didn't think very clearly.
• This post includes several lessons I learned regarding safety. Please don't wait for a crisis to implement safety practices.
• The overall lesson is I cannot care for a man that is a risk to my safety.

1. Think about safety and be safe. Safety comes first. 
2. ALWAYS keep your cell phone charged and within reach.
3. Don't hesitate to leave or call 911 in the event of an aggressive explosion that puts your safety at risk. 
4. Trust the people who have endured or are enduring this rugged path. They speak from experience 
5. When people offer to help, let them. 
6. Don’t expect the social services agencies or the police to meet your expectations. But do call on them for assistance 
7. Don’t isolate. Develop and maintain a supportive network.
8. Sleep when you can. 
9. Don’t delay in handling the legal matters. 
10. Decisions should be made based on logic, not emotion. 
11. Remove, hide or lock-up potential weapons. For example, get the guns and ammo out of the house. Get the hammers and box cutters out of the house. I have minimal knives in the kitchen.
12. Identify rooms in the house can be secured with a lock. Although both the bedroom and bathroom door in our apartment can be locked, my plan is to leave the apartment. 
13. I am prepared to leave my home without hesitation, and I will stay away from my home for as long as necessary even if it means sleeping in my car.
14. Consider keeping important documents and a “go bag” in the car or off premises. I keep copies off important documents stored with a loved one out of town.
15. The phone numbers for the crisis response center and the women's resource center are programmed into my phone. 
16. I practice gratitude no matter how hopeless. For example, I am grateful for all of you. I am grateful for the places I’ve slept. The various roofs I’ve had over my head, hot coffee, nature, my car, a cell phone charger, toothpaste, a hot bath, clean underwear, my faith in a higher power. 

• DH was angry for months & months and I was his verbal punching bag. Every loss and every problem was my fault. He said the ugliest things to me. He threw me out of the house. He told several doctors that he was divorcing me which made arranging care especially difficult.
• After one particularly horrible incident, DH ended up in the psych hospital. Thank goodness. The 72 hours that he was inpatient provided much need respite for me.
• As a result of the hospital stay, DH connected with a geri-psychiatrist that is phenomenal. She prescribed anti-anxiety meds and emphasized to him that the meds would not work if he drank. He didn't stop drinking at that point. After several more horrible incidents, and additional meds, and follow-up visits with the geri-psych doctor, husband is now abstaining from alcohol. THAT has made a huge difference. I have quite a few alcoholics in my life, so I know what an anomaly DH's sobriety is. I credit the meds, the doctor and the grace of God.
• The verbal insults still come and are still painful. I try to be my own cheerleader because DH doesn't appreciate the depth of my commitment to his well being and care.
• My life was often chaotic, miserable, unpredictable and a lonely place to be. Friends and family did not understand what I was going through. But the people on this forum did. They understood and cared. The caregiver heroes here provided applicable and actionable suggestions. 
• I also learned to discuss what happened (my husband's aggressive outbursts) with a trusted friend or professional. Thanks goodness I was able to vent on this forum. I received excellent, NONJUDGMENTAL advice and suggestions from the caregiver heroes here.
• Later, my counselor helped me process what happened. Once I shared my experience with someone I trusted, the fear and the shame had less power over me.
• Please be safe. You matter. 
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Ed1937

Lady Texan's post is excellent. But I would like to comment on #12. If you identify a room that you can lock from the inside, please make sure there is a window that you can use to get outside. If he should break the door down, and you are stuck with no way out, that would put you in a terrible place.