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Hi friends,
I am sitting across the room from my grandfather right now who is in outer space after the smallest dose of Risperdal his doctor prescribed for the occasionally very bad Sundowning episodes. I just gave it to him for the first time because he has been a nightmare all day (didn't sleep and moaned all night to the point that we couldn't take him to his urology appointment today because he was so exhausted and flared up).


I am in tears because I feel like a monster for drugging him, but he has been throwing tantrums at me, telling me f*** you over asking him to drink water for his low blood pressure, trying to get out of bed, messing with his foley catheter. I haven't slept well because I have to leave the door ajar and listen for any panic (he pulled his foley completely out the other day). I couldn't take any more of the sleep-deprived meltdown and verbal abuse, but now I feel evil or something for giving him the medication.


Also, sub-question, do y'all ever say no to your demented family member's requests? I am tired of being run-ragged because he asked for yet another item every time I sit down to do his paperwork. He is sweet as pie to his home health team; he only chased away the overnight caregiver (of course, the one I need the most to sleep at my own apartment once or twice a week). I have plenty of support from the UPenn Health system for therapy, personal care, and I have a private pay person to watch him during the day who he loves. Even with all of these privileges and supports, I am still burned out. I take the bulk of his sh*tty moods and lashing out and I'm tasked with all the chores and paperwork and endless phone calls. I'm waiting for approval for a respite stay at VERY nice and affordable memory care, which might not pan out because they might not take catheter residents. My boyfriend planned a trip to Barbados to cool my brain and spend time with him, but I feel like it is not going to work out. My other family are awful people, incarcerated or suffering from serious addiction issues, so I'm truly flying solo.


Anyway, do I have to fulfill every single one of his requests? He's still an adult and partially lucid. It seems insane to have to say yes to literally everything. I still have a serious soft spot for him, he's my only family member that has always defended me and been kind to me, he is my favorite and the only one I would do this for. Dementia blows and watching him deteriorate is heart-wrenching, but I'm also tired of taking the brunt of his aggression and need a break---just feel guilty about that being a chemically-induced one today.

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I am only 65 and have had to take something to help 'calm me down' after suffering for many years with PTSD due to childhood trauma. I also have to take medication to help me sleep. (Night terrors).

If I had not gotten help in the form of judiciously administered pharmaceuticals, I know I would have taken my own life. Anxiety is literally physically PAINFUL.

Am I proud of this? No, and it's hard b/c my kids don't 'get it' and I am often on the defense of telling them this is none of their business.

What's the point of letting someone suffer when the answer can be so simple.
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Why would you feel guilty about giving a dementia patient medication intended to calm him down? That really doesn't make sense when you think with your head instead of your emotional heart! Dementia is a terrible affliction and the elders REQUIRE medication to help them. It's the same logic that requires a heart patient to need BP meds and beta blockers; you'd never feel 'guilt' over administering those meds, right? Or pain meds to someone suffering from terrible arthritis? Same principles should be used in your grandfather's situation. Watching an elder who's confused and ranting with agitation requires a dose of whatever meds to help him calm down b/c he can't achieve that peace on his own; his brain is damaged. He needs you to help him b/c he can't help himself.

As far as telling him no, of course you need to do that! Set down boundaries for your OWN sanity otherwise you become a slave to dementia which has NO rationale to it! He can change his addled mind 10x in 20 minutes and then what? You're run ragged for no good reason b/c in 30 minutes, he likely won't remember ANY of the requests he made to begin with! Decide what you're willing to do and what you're not willing to do, and go from there. It's okay to have a soft spot for the man, but it's also okay to take care of YOURSELF at the same time so you don't wind up with compassion fatigue and/or burnout.

My mother is 95 in Jan & living full time in a Memory Care AL since June of 2019. She too has horrendous moods b/c she is now refusing TO take her medications and pocketing them in her room. So I am the one who she's decided is The Devil now and expected to take the brunt of her harsh and ugly words. I won't though, b/c it's too much to bear after dealing with her for the past 10 years every day, day in and day out. So I take her in SMALL doses on MY schedule and when she's in a civilized mood. Otherwise, I'll let her know I'm leaving her presence or hanging up the phone & will see/speak to her when she's in a better mood. Dementia or no dementia, she 'gets it' when I tell her I'm not putting up with her crap and that I don't deserve it. Respect is a two way street.

Wishing you the best of luck setting down boundaries with grandpa, getting respite care as often as possible, and understanding that your OWN needs are just as important as his!
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PerfumeGarden Nov 2021
thank you. This message board has helped alleviate A LOT of guilt I have about navigating his needs. The biggest one was taking on financial POA and letting all of his caregiver costs (she comes 3 or 4 afternoons a week) be paid out of his account, as well as all the ever-increasing lot of items he needs for him to be able to stay home. I'm working on taking an equity loan against his house (about 25 percent) so he can stay as long as possible (trying to look forward to about 18-24 months and avoid the Medicaid money munch). I think because of how manipulative his children are, I feel like I'm always going to be looked at suspiciously for just doing the things he really needs, mostly because I'm young and have access to his SS/pension and savings. I get a lot of squirrely looks at the bank as a 33-year-old who looks 25 for having POA that HE designated before he became demented.

I also don't want to overdo it on the anti-psychotics because of how much I have read about it not being great for them; however, the alternative is constant stress and anxiety for him and it is just such a bummer to watch. I am not a martyr and I know that there may come a time he needs memory care residency, but while were at this step, I just want him to have some joy.
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Him being calm is a gift to him. You shouldn’t think of it as drugging him, but helping him. And of course you need to say no to requests that aren’t reasonable, he’s no longer capable of make wise decisions. Decide whether this living arrangement is sustainable, it sounds like a higher level of care may be needed
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The meds are necessary for him.
Imagine having to live with that level of anxiety, inability to sleep, and inability to have any modicum of inner peace.

I would much rather be sleepy than live like that.

My mother's meds just had another change recently. She had been getting almost violent with her caregivers. My mother has always been cranky, but never violent. I hate that her Dementia has gotten her to this point.

PLEASE take care of YOU, as well.
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I think placing him in a good Longterm facility would be a good idea. I hope ur are not paying for his aides. If its his money, take it an place him in a Memory care facility. When his money runs out u can get Medicaid. You should not need to deal with this.
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the doctor is right … seroquel (brand name) is the safest antipsychotic for dementia!!!
not any of the newer ones … and it seems like small dose … it helped even out my husbands moods alot
and don’t be afraid to give a few small doses during day if needed … of course check with doctor !!!
it’s a lot more cruel to let him be so frightened anxious aggressive!!!!
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GAinPA Nov 2021
My 99 year old mother, in memory care, started Serequel, and it has GREATLY improved her ability to remain in memory care in her own private room. Able to walk down the hall to breakfast and walk back to resume her normal routine. (Napping;)) Previous to the med, she was up all night, charging into other peoples rooms, refusing to allow changing of her pull-ups, throwing her teeth at the aides and not eating. Head nurse and director gave me the “we can no longer meet her needs” speech. Serequel has bought her a little more time.
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Don’t feel bad at all. That’s what the drugs are for. If he was in his right mind he’d want you to do whatever it takes to make things manageable. I had to learn this going through dementia with my dad and hospice with both my dad and husband. It needs to be manageable for the patient and the caregiver. You didn’t do anything wrong. You need to think about the long haul and give yourself grace.
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If meds had worked to calm my Dad down, he may have been able to stay home with us longer, and not go to MC. Think about that if you want to keep him home.
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So sorry, I feel your pain. Married 40 years to a wonderful husband till he got early on set Alzheimer's around 60 years old. he is 74 now. I have been doing the same as you. Its a process of learning as we go . everyday brings new challenges.
Like you just about 2 weeks ago I was just so tired and my husband was staying awake moving the carpets and furniture talking to people not there. About a year ago neurologist said to give him quetiapine 25 mgs to sleep. But I read the side effects and decided not too, instead I gave him during the day clonazepam 0.5 mg to calm him as needed. but it wasn't working. One night I was going crazy. the next few days tried to reach the doctor , Finally he called me and said to give him the other drug and figure out what dose works. I started it the next day gave him one 25 mg in the morning then at 5 pm and at 8 pm before bed. its been a life saver. after a few weeks I am able to rest. I am sleeping in another room for 3 weeks with a baby monitor and a bed alert I got off amazon. I also got a Arlo wireless camera to see him. If he moves it alerts me , if he gets up ,I can run to the room and help him ,to the bathroom in the dark, so he want pee all over the floor some where. I figure they are suffering and need the drug too. That's where I am at now. tomorrow may bring a new challenge. Seems no one really knows what this disease is really like and how each case is different. I hate this and miss my husband...
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The way I look at this is the agitation is not good for the person either. My Mom was put on anxiety medication.
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