Flip of a Switch

AnnMB

Just checking in to say I'm still around. Things are progressing faster than I'd like but it is part of the disease.

We have had some really bad days and some short nights. We are all tired from having to deal with the progression. DH has become more verbally aggressive towards DS and I. It goes on for hours and we get to the point where we have a melt down. We do and say the wrong things and then regret for days afterwards what we have done. On top of the verbal abuse, DH has started to be abusive physically. He was going to hit DS with the dandelion weeding tool. He threw a deck chair last night. Hit the railing. We know it is frustration on his part. Other times, he paces throughout the house and we let him as long as all is safe. We also let him pace outside but sit and monitor him. When he is calm, he is quite nice but that switch can flip in an instant.

The biggest issue in DH's life right now is the garden. He is the "expert" and we know nothing. If we tell him something, he gets angry with us and will think about destroying the raised beds. It will spiral until he threatens to pack his stuff, burn down the house, and leave. It takes all of us to calm him down and it repeats itself the next day or the day after. What is so sad, the garden is fabulous. All the plants are super healthy, growing fast, and starting to produce.

Today we have respite and she arrived a few minutes ago. He has been pacing inside and out, muttering about things missing, looking at things to make sure all is okay. I am letting him pace. When he goes outside I sit on the deck monitoring him. I say very little to him just answering his questions. He is hating me at the moment as I am the trigger of all this.

I am hoping that I can do a phone call evaluation with continuing care this morning while respite is here. We are going to talk about a couple of things -- placement into a home and maybe more respite time. I would like to talk about taking him to a day care so he can be off the property for a day a week. Once we see the doctor, we will decide if we want an emergency placement (2-3 months) or a regular placement (6+ months). This decision came out of me dealing with him on a daily basis and someone in a video meeting say to get them onto  asap. You become a better person to be with them when you are rested and fresh daily. It is a hard decision to make as I worry about him being cooped up in a home.

We see the doctor next week and will be talking about something for him during the day when he is so agitated. He has been on an increased dose of his medication for 6 weeks now. The increased dose is at night and it does help him sleep all night the majority of the time. We need to look at his daytime dose or another medication to help him be calmer during the day. 

I am off and running to take some items to DS's house so they are out of here as he used one as weapon the other day. I am hoping that I have enough energy to deal with what is thrown at me this afternoon.

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toolbeltexpert

Ann this so hard especially the behaviors. Please consider placement, my dw behaviors were getting out of hand and I may be placing her soon? I hope you can get more respite time for you. I remember you in my prayer.

Ed1937

Ann, this is a long shot, but is it possible that a UTI could be causing all the problems? A test with a culture would give you that answer. Sorry it is so hard.

AnnMB

When we see the doctor, I will ask for another urine test with a culture.

Talked with continuing care and we are doing a couple of more things. I am going to talk with a specialist who gives ideas and suggestions on how to deal with behavioral issues. I know one thing I do it repeat myself over and over again when trying to calm him down as I am exhausted. I flip into survival mode at that point and need to try and have ideas on what to do. It's a fine line letting him wander without saying anything to trying to get him to sit down and rest which is when I repeat myself every few seconds. I don't even realize I'm doing it as I'm exhausted.

The other thing we are going to try is getting him into a day care situation where he is others at a facility and join in with the activities they do. I wonder if getting him out of the house and off the property into an environment where he's safe and without "us" will be good for him.

 The last thing we will do is increase respite time. I may need have another day though I don't think the respite is helping him. It helps me some as I get groceries and do a bunch of other things that needs to be done. I did take an hour today to visit a friend which is the first time in a while. The last time I went I had DH with me and had to watch him.

He is tired and wants to nap but won't do it as I'll be upset with him. I need to rest also but he refuses to believe that. I am thinking of a strategy of how to do it.

Ed1937

AnnMB wrote:

He is tired and wants to nap but won't do it as I'll be upset with him. I need to rest also but he refuses to believe that. I am thinking of a strategy of how to do it.

Let him nap without getting upset with him. In fact encourage it. That's a perfect time for you to join in, and get a little rest yourself.

jmlarue

I feel so incredibly sorry for you. Your story is so similar to what I'm facing with my DH right now. The hard part is seeing no light at the end of this tunnel - just another day of adjusting meds, attempting to  distract and redirect the anger and aggression, and coping with our own exhaustion and fear that someone is going to get hurt before this behavior issue is resolved. I had a long telephone visit with DH's geri-psych today. There will be another (yet another) med adjustment to move a portion of his bedtime meds (Quetiapine and Prazosin) to a 3 pm dosage in an attempt to calm the hallucinations, anger, aggression that tends to ramp up in the afternoon/evening. He's never had sleep issues. More importantly, his doctor is recommending that I consider seeking placement in a locked memory care facility ASAP. In the interim, she is quite insistent that I do call 911 to have him transported to emergency for possible admit to a hospital psych unit for stabilization of his behavior and then transfer to a care facility as a permanent placement. As hard as I have tried in the past, I cannot face the prospect of another week or month of the threats and attempted assaults toward me or anyone else. This struggle has now become an issue of survival, with my own mental, emotional, and physical well-being becoming priority. It sounds like you are not "there" yet. I applaud your willingness to try adding another period of respite care and the possibility of a day care option. Maybe that will work for you if your DH doesn't lash out at the caregivers in those situations. I have no confidence that it would work here, so I just don't feel any incentive in jumping through the hoops to try it.

I wish there were some easy answers for the caregivers and family in our situation. I don't think I'm being overly pessimistic in saying that there aren't any. The social workers and psychiatrists I am working with seem to confirm that. The consensus of all for dealing with this horrific progression is: inpatient commit to a psych unit for stabilization with meds and subsequent transfer to permanent placement in a locked memory care facility. The only thing that we have control over is our willingness to let go. It's a painful pill to swallow. 

AnnMB

I let him nap and try to nap also. But there are times he settles down, jumps up and is out the door with me following behind to monitor him. Today he fell asleep late this afternoon and woke up to have dinner and tell me how sore his arm is. I understand and I try to help him but we have no answers as to why it is hurting. I've suggested we go to the hospital and he stay there for a few days to have a doctor help him. He said yes but he said he will deal with the doctors for not doing anything. Just what we don't need.

I agree there is no light at the end of the tunnel when you are dealing with aggressive behaviors day in and day out. I worry about all our safety including his. I am not at the point of worrying about my safety as he hasn't followed through. I can call 911 in a hurry if it happens and will do it. Fire department is 1 minute away, police and ambulance 7-8 minutes away.

Found out late this afternoon that there is no Adult Day Care in our area. I'd have to drive 45-50 minutes to get him there and back again. He'd by tired by the time we got there and exhausted when we got home. I am mulling over how I can add more respite and what I can get them to do. Right now he complies with me helping him shower, dress, etc. He sleeps well at night due to the medication. But he doesn't always rest while sleeping as I feel him twitching.

On an ending note, he is better since eating dinner. I had a talk with him about his behaviors and how he treats us. We tell him it is not acceptable. I also talked to him about how his and my parents took a full hour to eat and then rest after each meal. He understands at this moment but I am not sure if he will when he has the next spell.

LorettaP

Delusions, Hallucinations are making me crazy!

Im exhausted and I have trouble sleeping. My DH was diagnosed with Alz over a year ago. Neurologist now says it’s not Alz and suspects LBD. He sleeps in another room because he has middle of the night vivid dreams/hallucinations, usually of men trying to break in. He thinks there’s other people in the house night and day. He asks me several times a day about the other people and sometimes he speaks to me as if he doesn’t know who I am. He recalls conversations with another girl but says he doesn’t know her name. (That girl is me.) I lock my bedroom door at night but I still can’t sleep. He works around the house all day, feeds our pets, and manages his own meds, so why am I having such a hard time?  My adult son lives next door, which happened since DH got sick. DH is his stepdad. I live in a remote area and I wanted some sense of security and safety with him being so close. My son tries to be supportive, but he doesn’t understand why it’s so difficult for me. Should I be able to adapt to the behavior and just brush it off? My DH has grown daughters who live 2 hrs away. They call him occasionally. I suppose they don’t visit because I’m very careful of Covid. I have Lupus and his family is unvaccinated. Im at the point where I don’t even care about Covid anymore. If they took him to visit for a few days, then he’d had to test or quarantine or whatever before he came home, and that’s exhausting just thinking about it. All of it makes me crazy! 

Stuck in the middle

Ann, I worry about your safety.  My dandelion digger is a yard of oak with a steel point, and I could seriously injure someone with it if I wanted.  I assume yours is the same.  Your LO wanting to hit your son with one of those things is frightening.  I agree that your husband will not remember or care about your discussion about the impropriety of violence "next time."

The decision to place him in a safe facility won't be yours to make if he seriously injures someone.  You are helping him as well as yourself when you make him safe.

I am sorry you are having to deal with this.  

T. Slothrop

Loretta,

It’s notable (to me) how similar your husband’s delusions are to my wife’s. Other men in the house; treating me like a guest (46 years married); someone is taking her things. Some nights she asks me to sleep in the other room, because her husband might come home. It is exhausting. 

I am starting to look at MC places, and so far what I’ve seen is horrendous, depressing, full of very old, demented people.  I would not want to visit.

My DW is pretty together in the mornings, and deteriorates through the day. Is it fair to put her in a place that is designed for dementia? I’m hoping I can find an environment that adapts daily. 

I’m just sharing; but curious about your strategies. 

Tyrone 

Quilting brings calm

Oh so many of you here that I am worried for.   Please do what is needed to keep you safe. 

Jmlarue- you especially 

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jmlarue

Quilting - thanks for your concern. I've had a couple of days where he has not been lashing out, but the change in his psych meds really haven't tamped down the hallucinations or paranoia. Truth be told, I'm just hanging on by my fingernails waiting/hoping these meds will have some good effect. I'm not optimistic.