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Spouse or Partner Caregiver Forum
The Switch Flipped - He Says Get Out
Yesterday was fine (all week really). DH woke me up at 3:30a with "How did you get in here?"
I sleep in the LR on the couch, where I can monitor the front & back doors. DH is a wandering spirit. He increasingly stays in the bedroom (between episodes of exit-seeking). Won't leave the house otherwise for errands or groceries with me (meaning I can't either, which is becoming a problem...)
He won't take his Seroquel now - last took it at dinnertime (missed late night dose). Not sure what 'morning' will bring. He has only done this hostile demanding I leave once before that I remember and it passed quickly after he took a short nap and awoke to greet me pleasantly as if it never happened. Unless I can get his meds in him, I don't think it will go so well this time.
He just came out of the bedroom again saying I'd better be gone when he wakes up. I'm tired and this feels like whiplash, the constant roller coaster. I thought we got the UTI solved with the new antibiotic. But he really won't bathe now, and resists changing Depends more than once every 1.5 days...maybe he has another UTI? Just started palliative care so I will call the nurse shortly.
This is so disheartening. I have to work in 3 more hours and haven't had much sleep. (sigh) There is no money for MC and even part time home help is slow to identify, though I have calls in to area council on aging and the grapevine of friends and faith community. The palliative care folks referred a caregiving agency but they weren't registered with the state (fishy!) and the guy seemed great but wants $40/hour with 6 hr minimum, 5 days a week. I can't do that.
Hoping DH will wake up on the other side of the bed. I don't have time or energy to get "thrown out" today.
I am so sorry that you are going through this. This must be unsettling and exhausting. Please please please think about your safety and be safe.
I hope he wakes up on the other side of the bed, but be prepared if he does not. Please keep your cell phone charged and with you.
BTW - $40 per hour for a caregiver is WAY above the rates here in my small-ish Texas town. The going rate is $22-$28 per hour, for caregiving, light housekeeping, meal prep, etc.
I am holding you in prayer.
Hi M1 and LT -
Thank you so much for your support and well wishes. I could not go back to sleep after the abrupt wakeup call. Trying to process all the fight or flight instincts I guess -- I don't fight, and can't flee, leaving behind a dependent 6c PWD. I do keep phone charged, keys and purse nearby at all times. Would call 911 reluctantly but would do so if either of us became at risk.
I am happy (relieved!) to report that it seems to have resolved itself. DH just woke up again, walked into the LR and said "Hey! When did you get here?" with a half smile and glad to see me. Go figure. I hurried to give him his Seroquel.
He's now been in the bathroom for at least 20 minutes (sounds like doing nothing) and I'm going to leave him alone until the meds kicks in. This starts day 2 without changing Depends but I'm calling the nurse to report behavior, and agencies again to see if a home health aide can start for a few hours today. Best to have someone else nudge him on the challenging things for now.
I'm sleepy but feeling more secure. Though that is a false feeling with dementia. Thanks again for your encouragement and prayers. Sending the same right back to you both, and all caregivers.
But your number one priority has to be staying safe yourself. Do what you have to to make that happen.
Dear Wings, I hate this disease and what it does to all of us. I think you had mentioned Dr Tam Cummings recently, I think…
Anyway, I found her on YouTube and watched a video called Untangling Dementia. She spoke about what you are going through now and why our LO’s don’t recognize us. It was helpful but actually living through something is very different than seeing a doctor talk about it. I’m sorry this is happening to you and him.
$40 does seem high. In Richardson Texas it’s about $25 an hour and includes everything Lady Texan mentioned. These folks even spend special time interacting with the patient to form a friendship and trust. Talking, singing and holding hands.
Good luck. Sending you peace.
I’m right there with you in the throes of Stage 6C/D . I’m glad that he was happy to see you when he woke. The escalation of incidents and adrenaline rushes coming closer together is no joke. I feel for you. I’ll keep you in my prayers .
Butterfly Wings - I understand and am going through a very similar situation. My LO has told me to "Get Out" so often i've lost count. Her agitation and anger was getting progressively worse. I contacted the primary and she prescribed Quetiapine (Seroquel). It caused too much dizziness and she refused to take it so we had to stop it. We were then referred to a Geriatric Psychiatrist. She started my LO on Olanzapine at the beginning of July. The anger has finally toned down. Not totally gone. I still get told to "Get Out" of her house (it's our house) a few times per day but I have also noticed a few things. When it occurs she is not recognizing me as her partner. It's almost like a Jekyl & Hyde situation. One minute there's the anger, she says she's leaving, walks out to the back patio, comes back in and is all sweetness. This usually happens after 12 noon. The doctors are saying it's sundowning. I always thought that was later in the afternoon. What do I know?
The meanness really hurt in the beginning. I cried a lot which didn't help the situation. Since the Olanzapine has calmed things down I am handling it better. I tell her I am not going to listen if she is going to be mean. I ignore her completely. Sometimes I will even go into another room and read a book or check email. It's like the toddler not getting attention for the tantrum.
Fortunately for me, she doesn't leave out the front door but I do check if I hear that or the door to the garage being opened.
I'm sorry you have the added worry of him leaving. Funny how they tell us to get out and they're the ones going out doors! Hang in there!
I too have been sleeping on the sofa to be watchful of the doors,, which do have alarms on them. In the last couple month he has made me leave our home multiple time . Pushing and shoving making fists and threatening more. Some times if I leave ( going outside where he can’t see me but I can watch the house) he will settle down and I’ll come back and ask if I can come in after a few hours. Some times that works, sometimes not. I am fortunate that our son lives close by and he will come over if his agitated state lasts longer and for the times he has taken off. He can get him to get in his car and return home. I cannot, I am the object of his anger. This is a man who never was aggressive or rarely raised his voice. We have raise five children and had a great retirement until the last year when the anger became part of his AD 7 yr journey. He went on one of his anger driven walks 3 weeks ago and was taken by ambulance to the hospital at 1:30 am after a fall. Initially, he was to stay for observation after an MRI showed a brain bleed but they then transferred to the geriatric /psych floor to try to have his meds adjusted to try to lessen the severity of his episodes. So far it’s hasn’t changed the severity of his outburst only the people he’s raging against. And to top it off no visitors are allowed on that floor because of COVID. This is not his first hospital visit because of falls and each time he has come home worse. The hospital setting is hard on him. He never remembers throwing me out it his hospital visits. On occasion his behavior is brought on by something but most of the time not. He can be someone that I fear one minute and the next he’s crying, neither are the man I know. He was not one to cry, maybe a few tears on occasion. He’s always been supportive, caring and wanting to help in any way he could.
I want him home so bad but everyone keeps saying I can’t keep him safe nor am I safe. So
This site has helped me just knowing there are others out there who are dealing with similar things with their LO. When others say , “you know that is not him when he does these things “, it rings hallow but when y’all say it …..I know you know the heartache is still there. I also know friends mean well but I guess it’s just a misery loves company thing.