Dad is 90 with dementia in assisted living. Sundowners is getting him up several times a night. He gets dressed and thinks he has to go somewhere. Facility wants to medicate him, dr says seroquil. FDA says no to that med for elderly with dementia. Doubles mortality rate and stoke. Suggestions or experience? Can't take Benedryl because of prostate issue, and melatonin not option either. Help?
Carol
I AM 87 GOING ON 88 SOON. I AM FORTUNATE TO BE OF SOUND MIND "AT THE MOMENT".. I ADVISE YOU TO STOP FEELING SORRY FOR YOURSELF! YOU ARE FORTUNATE TO STILL HAVE YOUR FATHER WHO MAY BE EXPERIENCING SOME HARD TIMES BUT AT LEAST HE HAS THE SENSIBILITY TO BE ABLE TO COM[LAIN ABOUT SOMETHING. WHAT IF HE WERE TOTALLY "OUT OF IT " AND COULDN'T COMMUNICATE AT ALL.
COUNT YOUR BLESSINGS, GIVE HIM WHATEVER MAKES HIM FEEL BETTER. EVEN IF STARTED SMOKING MARIJUANA, IT COULDN'T HURT HIM. TAKE LIFE EASY FOR YOU AND FOR HIM. HUMOR HIM AND GIVE HIM YOUR BEST WISHES.
IF YOU DON'T DO IT SOON, YOU WILL FOREVER REGRET IT AFTER HE PASSES.
I TOOK CARE OF MY WIFE FOR MANY YEARS AND NEVER DENIED HER ANYTHING. IT,S TIME FOR YOU RECIPROCATE FOR WHAT HE PROBABLY SACRIFICED AT TIMES FOR YOUR BENEFIT.
GOOD LUCK..SONNY
Give 2 hugs
YOUR MY KIND OF GIRL! 85++ IS A RISK OF DEATH, BUT REMEMBER THIS.. WE ALL START DYING RIGHT AFTER BIRTH!!
SONNY
I do not like Seroquel because I've seen someone who takes it fall asleep only to awaken me with horrendous, nightmarish yelling. That being said, it doesn't mean YOUR DAD will have this side effect. They will start him off small and hopefully monitor him.
My mother does well on Mirtazapine. She's also on 37.5 Effexor (also a sleeping aid, but in this case, used for depression, Olanzapine (a black box 'evil' drug) for paranoia ...
When a psychiatrist down here tried to lower that dose of Olanzapine, that 'evil' drug, she walking around, waking at night, knocking at my door telling me I was sleeping too late and I should get up. It was 3 a.m. She was fully dressed, had been out to get the paper 'but it wasn't there', etc., etc.
I guess what I'm trying to convey is these warnings aren't as helpful as they should be. If a drug is going to help a person, they should be allowed to have it. All drugs, even NSAIDS, now have these warnings re how 'evil' they are, they can cause 'death' etc.
But they can also be beneficial. Your dad is 90. We all hate to see our loved ones in this state of mind, but at some point, we have to acknowledge they need comfort, not unnecessarily worrying about side effects. Most elderly people have decline in kidney function. Most drugs cause kidney function problems, liver problems, etc. The body is breaking down. It's deteriorating from day one of our lives.
We need to accept this and just be thankful these drugs are available to help either us and/or the people we love.
Please write to tell us what you decided and what the outcome was.
I'm not suggesting we hasten their deaths, but when a person reaches this age, to be thinking about the side effects of a drug that may benefit them, is quite ridiculous.
My mother takes at least ten different drugs that keep her alive. If any one of those drugs was taken away, she'd die a 'natural' death. She now has a serious case of dementia along with paranoia. The brain is going. Nothing is going to help that. Nothing. Once those tangles are there, they are there.
PLEASE ACCEPT MY SINCEREST APOLOGY..
I SOMETIMES "GO OVERBOARD" WITH MY REMARKS.
SONNY
A good Daily Routine is essential - that's the biggest lack when people live alone, or with family. The family has a lot of things going on, and the elderly person alone is often an accident waiting to happen.
Just like children, they need a routine. When we work or go to school, or while raising our kids, we have one. They don't, but they badly need it.
Several things mentioned, closing shades before dark, and a Routine are helpful. Also, the drugs given many elderly do them harm. They're largely and even overwhelmingly, dehydrated. So they lack energy during the day. You see them napping all the time. They sundown, and so they get days & nights confused. That's part of the disease but it can be managed.
I do these things for my own self as well, and I can tell you They Work.
1) Hydration - No soda, if anything they're not a water drinker, get the ICE (flavored water) or a vitamin water, etc. Something without sugar or caffeine, and get them used to it. Don't ASK are you thirsty. Simply give them the glass, and You drink yours. "Here, dad/mom, let's drink - doctor said we should stay well hydrated and flush the system to make better use of our food, vitamins and medication." Tailor it to your own parent's ability to understand and do this. Liquids should be Warm or Room temperature when possible. Why? Digestion takes place at Body temperature. That's considerably higher than any room temperature I know of. They're already sitting around shivering with a sweater on.... Now we give them icy drinks - do we really Expect them to drink much? It's a process of gently changing habits by Example. Big ALFs don't have staff to do this and small ones are often not thinking about any of this, just giving drugs as prescribed or Asking the home doc &/or family to get them drugs, so they're easier to care for.
When will they drink most readily? In the morning. Aren't we all thirsty when we wake up? They sleep differently - often remaining on their back the whole night. Which makes for a very dry and even sore throat on waking. At Angel House, we gently waken them at the Same time each morning (can't do that if they have a drug hangover) When they Stop Sleeping the day away being dehydrated and lacking energy (I see articles all the time, such as "6 surprising reasons you lack energy" and they say you're Dehydrated - and that's US, let alone elderly who quit asking for water and don't feel the thirst anymore - or who are incontinent, and don't drink so they won't have to go to the bathroom or be wet) It's like Magic - they have more energy during the Day, so they don't nap and they sleep sounder at night, and we back the medication off.
I put a big glass (mine's 28 oz!) on my nightstand, and on theirs, I begin with 4 ounces in a juice cup, at bed time. Working up to 6, 8 ounces. Not for them to wake and get in the night, but to drink when they sit up, before they even stand to be helped to the shower. "Good morning! Let's sit up (I've opened the shades and am smiling) There we go. Boy, you look thirsty, here...." They drink it all - then I get them to the shower (maybe first sitting to toilet, while I go refill the cup) After a week of that, we see far less constipation, more energy, they are more interactive, less anxious, and we use Melatonin & Tryptophan, Kava Kava, etc. instead of habit forming drugs that make them serious fall risk in the night if they still get up to toilet. My mom was on drugs when she came from TX but we weaned her off that way, and her days were more cheerful. Seroquel and other things often blunt the emotions, and we're about quality of life, not maintaining the physical shell in an easy format for us to deal with.
2. Nutrition
We use no White bread, no white sugar or white rice, white pasta at our ALF. This makes a huge difference too. Sugar and especially High Fructose Corn syrup is in so many things today - read the labels, opt for healthier choices. This is not about weight control, but well being and mental acuity. Lots of coconut water, coconut oil & coconut milk - we make a great cereal with steel cut oats, quinoa & black or brown rice - sometimes Farro (Italian high-protein grain) Adding raisins, dried cranberries, prunes, any other dried fruit sweetens it naturally and adds antioxidants & fiber. We also add apples, cored & chopped, not peeled, cinnamon, vanilla and cook it all in coconut water, milk & oil. This is delicious and gives a warm hearty breakfast to daily reheat quickly, doing the work once weekly when you have time. Again the Routine is almost as vital as the ingredients. Cold (anything) is not good, and at home with your busy life, a short order cook is not available.
3. Music - Yes, but better yet, Hemi-Sync or another Alpha/Beta/Delta wave music created for brain health, healing, concentration, to work with your body and heal, rest and energize/focus your brain. Go to Youtube, get wireless speakers, play at night while you sleep for at least 1 week. See if you don't feel a huge difference, by doing just these few simple things.
It simply Works.
There's a lot more but those are the basics and I hope they help all of you.
Angel House is in Pembroke Pines, FL at AngelHouseSeniors
God bless you all and thanks for being concerned about your folks.
Doreen
Any ideas will be helpful.
Xanax is indeed habit-forming, if it is taken free-will by the patient. If it is given occasionally for specific situations and purposes, it may be fine. Of course that will all depend on the patient, especially in an AL where the patient can call and ask for whatever drug they want at any time. The good thing is, they should have a care plan in place for him and be able to give him something different if his orders are written up in such a way that they are not allowed to give him Xanax more than once a day or week, or whatever his doctor and the head of nursing thinks is appropriate for his situation. For my dad, they give him Xanax on his shower days so that he remains calm - it's still frustrating for him to know that he needs help with bathing and changing, because he was always very proud and private, as most men of his generation are.
As for Seroquel, for us it has been a lifesaver. Particularly when my folks were at home, my father would have a violent kind of sundowners where it wasn't simple restlessness but extreme agitation, about whatever might be upsetting him at the time. The knocking over furniture, breaking walkers, breaking closet doors kind of agitation. Thank g-d he never hurt my mother, but he very easily could have, as there were firearms in the home. (We ended up disabling them, but it was still scary because being independent, he could have gone out and bought new ones at any time.) After they moved into the AL (no firearms allowed!) his seroquel was increased slightly on the advice of the head of nursing, with the approval of his geriatric psychiatrist, whom he still sees every few months. He has had no more episodes of extreme agitation, and no side effects other than sleepiness. While it's true that the FDA put a black-box warning on Seroquel and Risperdol, this does not mean it will absolutely cause this type of event, just that it increases the odds. Only you can decide what you think about those odds - yes, it is troubling, but in our situation we felt we had very little choice but to do whatever we could to keep him calm.
However, the real miracle drug in his life right now is not a pharmaceutical, but plain old magnesium. I read somewhere that it can prevent anxiety attacks, so I've got both of my parents on it because of course mom's whole world was turned upside-down with this craziness going on - she also suffers from migraines, and it was on her neurologist's advice that she started taking magnesium. I noticed that it seemed to help her with her periodic upsets about not being in her home, which I spite of the dangers, she still misses. Then I read about different kinds of magnesium trying to figure out what type the neurologist might recommend, and that's when I found out that magnesium deficiency is thought to be a factor in both anxiety and depression. In the end the neurologist settled on magnesium orotate, which is supposed to be easier to absorb and tolerate. That may be hard to find in local drug stores, but can be purchased online on shopping sites. Now both of them are on magnesium orotate, and my dad has become a completely calm person 90% of the time, even when truly upsetting things happen like getting a nasty collection phone call or letter - yes, there have financial troubles as well, due to years of dementia before he would accept help with his finances - so I am very happy with how well magnesium has helped to stabilize his moods.
I wish you the best of outcomes for your father and your family.
If for some unknown reason, Melatonin doesn't work, then my daughter's best friend, who is an RN, advised me not to hesitate giving him regular over-the-counter sleeping pills. They, too, knock him out for the entire night. The brand she suggested is the CVS brand "Nighttime Sleep-Aid Mini-Caplets." Please remember that the doctors are in bed with the pharmaceutical fat cats when they prescribe medication for sleep. And so much of the time, these prescriptions prove to be useless for what they're supposed to do and have harmful side effect.
Her neurologist said that with Sundowners there is no good sleep aid. He suggested Melatonin 3-6mgs, but I have since learned that Melatonin can you her to sleep but not keep her to sleep. She doesn't need help falling asleep. She needs help staying asleep.
Perhaps medicine will work in your case but in my case retraining her worked better for me. It wasn't overnight I got her trained this way. It took a month I think but now she expects it even with her severe dementia'd brain.