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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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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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Medication to calm him shouldn't have to turn him into a zombie, sometimes it takes a while for the body to adjust of to figure out the optimal dose. When he's out of control he's not in a good place either, he's angry or afraid or paranoid whatever else is causing his agitation and allowing him to remain in that state of mind wouldn't be doing him any kindness.

And of course you don't have to give in to every one of his demands, all relationships are built on give and take and you can't be the only one giving or you'll do yourself and your relationship with him harm.
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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 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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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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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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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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Just think how he is feeling during a melt down. Maybe something less than resperidol. My MIL is given a Xanax when she becomes agitated to the point it is affecting her. Why do we want her to be riddled with anxiety.
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@PerfumeGarden, I’m disturbed to see you write “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.”

Don’t disappoint your boyfriend by flaking out on a glorious trip after he’s gone to the time and expense to arrange something to help pamper you and de-stress you. He clearly sees that you need a break.

Your loving grandfather would say the same if he were in his right mind.

Please don’t punish your boyfriend and yourself by cancelling the trip. You’re (possibly) deciding to cancel the trip to stay at grandpa’s side and beck-and-call as the exhausted main caregiver is NOT going to make him better. With dementia things don’t get better, they get inch-by-inch worse, so take care of yourself and spend quality affectionate time with your boyfriend and make wonderful memories, so you can come back calm and refreshed.

The light medication prescribed for your dear grandpa will help him fight his dementia battle more calmly, and a vacation-refreshed YOU will also be better equipped to help your grandpa.

Bon Voyage!
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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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if your gran is not medicated, the trauma and stress will eventually get the better of you and being human, you will snap and then you will say hurtful things to him (things that you would never dream of saying...hurtful things ) that you will regret for the ret of your life. You have to weigh the benefits of the meds (dosage may need to be adjusted) for him and yourself verses your "guilt". also no health facility would ever allow a patient to stay if the patient ever acted like that which he might as he gets older. Have you ever told him the you will not be "verbally abused " and walk out until be calms down and momentarily go to a separate room? about the vacation? i never took a vacation while i helped take care of my mom for 7.5 yrs....so maybe you can go if the meds are sorted out
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Do not feel guilty about the medication; it is intended to help him sleep through the night and it seems to work. Use it for that purpose.

The best way to understand his daytime problems is that his world seems confusing and scary and he is trying to control you and his circumstances to alleviate his anxiety. Since your grandfather is having episodes of agitation with outbursts, he needs a different type of medication to help with anxiety during the day. Talk to his doctor about his daytime problems and ask about a mild anti-anxiety medication. Yes, these medications can be a little sedating until he gets used to them and you are able to work with his doctor to figure out an ideal dose. Do not feel guilty about your grandfather needing these drugs since reason and keeping a consistent schedule are not working to keep his anxiety in check. Remember that he is living with fear daily.

Once the sleep problems and the daytime anxiety are under better control, you should be able to find a sitter for him at night. If not, you may want to consider that it is time for him to enter a memory care unit.
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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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You are not alone. I have felt the evil towards my father.
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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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He needs to be on seroquel my husband once he entered the memory care facility became very combative with the staff and actually was arrested and sent to the ER to get him under control. The seroquel is helping when you are in a facility you have people coming at you to clean you, change your diaper and so forth, it can be pretty scary for a person going through dementia. He is under control now which is a good thing at one point I thought he was going to be thrown out , the meds are better for him and you in the long run.
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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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Here is my take. If someone is sick or injured or otherwise acts out in a horrific manner that is unacceptable and is harming the lives and welfare of other people, then it is time to do WHATEVER IS NECESSARY to put a stop to it at once - no holds barred. There is nothing on earth wrong with medication to "sedate" someone if they are constantly up in arms upsetting everything. That is quite acceptable and normal. And if that simply does not work, sometimes we must do what we must - we need to place them to be cared for by people who can handle this - not you. Feel no guilt. He should feel guilty for his behavior but with his dementia he does not know that - but that does not excuse what he is doing. It is still unacceptable and must not be tolerated. Be strong.
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I have doctor supervision and prescribed virtually unlimited codeine, because I have a lot of pain episodes from degenerating scoliosis. Do I like taking it when an episode kicks in? Not really, it zonks me out a fair bit. If I take it in the daytime I usually end up lying down in bed, very grateful for books. Is it an improvement on continuous pain? It sure is.

If your grandfather could make his own decisions, like I do, what would he want? Would he want to be swearing at you and moaning all night? Would he want the distress that causes that behavior? Would he want to be making your life increasingly impossible, so that he may need to go to a care facility? My guess is that he, like me, would prefer a reasonable amount of time calmed down and relaxed with drugs, so long as he also has a reasonable amount of time that can be more enjoyable.

Don’t feel like you are the only one making the decisions here, or that they are just for your benefit. Think about his choices, if he was able to make them.
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I wouldn't drug a loved one.
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MargaretMcKen Nov 2021
Would you drug yourself? Do you have any need to, or have you never thought too much about it?
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PerfumeGarden: Imho, you should not feel badly at all for administering a medication to calm your grandfather down, especially since he's suffering from sleep deprivation and it carries over, quite naturally, to YOUR lack of sleep. You absolutely do NOT have to okay everything he requests. Thus, you are the caregiver.
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You should not feel bad about giving him medication that is designed to help him. Do you feel that the "bad behaviours" he displays are good / pleasant for him? Just imagine if you had to behave like he does - would you be left feeling good at the end of the day? He doesn't understand this, but being on the go, aggressive, not sleeping, keeping on calling someone, etc. is very tiring.
So you give him the drugs the Dr prescribes for the help they give and they calm his behaviour or even knock him out. You get a chance for some rest, he gets some rest from behaviours he cannot help. Yes you have drugged him, but it isn't something you should feel bad about, it is treatment to help symptoms. It doesn't make him more like you would like, but it helps to solve a difficult position. No one thinks (one hopes) that we should keep all dementia or mentally ill patients sedated the whole time, but at some times it is the best thing for all concerned. Your health matters or you cannot care for him at all, talk to your Grandfather's Dr about whether taking regularly will reduce the "knock out" effects in time, or how often you can restrict giving him drugs, and your needs, but don't feel bad, and don't just not give what the Dr prescribes - he does it for a reason.
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If she needs the medication give it to him. Be thankful there are meds that help him with sundowning.
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Sadly, you have to give them anxiety medication or else face their abusive behavior. The abusive behavior will burn you out quickly! Yes, we hate to see them sleepy and sluggish from the medication but sundowning is just as hard on them. I’d rather see my mom calm and at peace than ranting and being violent. Doesn’t mean they have to be in a coma, but enough so that they are calm and you are calm.
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You may feel guilty that 'drugging' granddad is somehow shirking your care, taking an 'easy' way out, but let's face it, sometimes it's a blessing for both of you to build in a little respite. The drugs are a helper, not a substitute for your care but Part of it. If you burn out, you're no good for granddad, etc. And you do not have to be at his 'beck and call' for every little thing; it's OK to say 'no' along the lines of 'not right now' or 'when I get a chance I will do that' or similar; we almost have to 'train' our loved ones, create a structure. As I say of my clients, I'm Of Service but I am not their Servant (waitress, etc.!) All the best for all concerned.
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Give the meds a chance to work. First time is going to be the hardest and it will take a few days (weeks?) before they adjust the behavior or need to be switched out for some other med or combination of meds. You deserve some peace and he will benefit from at least a chance at a lessening of his distress.
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The agitation is as bad as the medication could possibly be. You need to rest if you are going to continue caring for him. It is not a sprint, it is an extremely long trek, you need to take care of yourself for him as well as yourself.
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The agitation is as bad for him or worse than the right medication could possibly be. If you feel it is a problem for him after observing for a few days, not because of "guilt" feelings, but observed behavioral of physical changes that seem problematic, ask his doctor to reconsidering that one or to recommend a geriatric specialist. You need to rest if you are going to continue caring for him. It is not a sprint, it is an extremely long trek, you need to take care of yourself for him as well as yourself. There is no real choice as you are human and must pace yourself.
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Why would you feel guilty about giving someone medication for agitation? Agitation is probably exhausting for our loved ones, and medication can help.

Would you feel guilty for giving a family member aspirin for a headache, or chemotherapy for cancer? Medication is a tool to help with illness. Why wouldn't you use it?
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