Anyone else also upset about having to administer medication to calm down a very agitated family member with dementia?
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.
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?
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.
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.
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!!!!
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.
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...
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!
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.
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.
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.
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!
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.