My 36 year old son, lives with us, independent in med management, care of his pets, personal hygiene; can drive self to appointments, but may ask for help if unable; does some household chores, and will help with tasks upon request. Makes his own daily schedule, almost to the minute, scheduling above named activities as well as writing, reading, dog training etc. No longer able to watch television, even high interest, no friends, processing delays, decreased oral expression. Has periods, almost daily in late afternoon or evening, when he can’t do anything on his schedule, increased paranoia(ie we’re trying to get rid of him),increased irritability and sometimes yelling. My husband and I are in 70s, and these episodes are so difficult at days end. He has a prn, but doesn’t want to take it regularly because it will become a regular med. He is petrified of being sent to hospital These episodes remind a little of the sundowning behavior in Alzheimer’s patients. Anyone experience these?
How long has your son been on the same medication doses? It might be that doses or timing needs adjustment.
That being said, I have seen my son fall into daily cycles when his symptoms are worse around the same time every day. It is almost as tho, once a pattern starts to get set, it becomes more and more difficult to break out of it.
My sz son, who is hospitalized long term, has had periods of agitation/anxiety in the later afternoons recently. He has a PRN but also doesn’t want to take it, but for him it’s because “it might count against me”. His psych team increased his olanzapine and he is being encouraged to use the PRN when needed. I’m very familiar with sundown syndrome in dementia patients and it does seem similar.
It doesn’t help that he is harassed by the staff for asking for the PRN. I’ve had to get involved with his therapist and report what he tells me. She was very helpful in working with my son to figure out other things that might help the anxiety- a little exercise, tea, calling a family member, distraction, meditation, etc.
He has been doing so well that this anxiety is worrisome. However, he is learning to listen to his body, recognize symptoms, and ask appropriately for relief. I’m hoping that this is another piece of his recovery and not an ongoing problem.
Thank you vallpen, this is my first time on this blog, so hopefully I’m doing it right. He’s been on clozapine for about 8 years, had to decrease dosage this past fall per blood test results, as well as progressive s/sx, and abilify added. Lots of tweaking going on in past 6-8 months, including varying dosages, timing of meds, prns. Haven’t thought of it as a pattern to break, sometimes I wonder if my husband or I are triggering them thru our behaviors. Occasionally he will go one to two days without it, and will just stay on his own personal “work schedule”. He has a long history of these episodes, but as we are aging and “ailing”, very hard to tolerate.(also, we downsized all together into a condo, 1 1/2 years ago, so we are in closer contact).
While we have have been encouraging his own problem solving, he’s reluctant to address this completely with his doctor, afraid of hospitalization. Also reluctant to discuss with case manager, same fear, as well as privacy issues. I really like that your son’s therapist is working directly on this.
@WAmac has mentioned several good ideas. @Dolor, is your son aware of this new pattern of behavior? If he is, then you would have a good chance at supporting him in making some changes to address it. But his hesitancy to address it with case manager will probably pose a problem in finding those solutions.
The meds adjustments could definitely be playing a part if some of his meds are not at the correct dose. And, unfortunately, my son never did as well on other meds as he is doing on clozapine. Abilify especially caused heightened agitation both times it was tried. I think I would refuse to ever let it be tried again.
My son has made good use of PRNs at some times, sometimes even taking them as a preventative.
I’m real sorry to hear things have gotten more difficult for you. Right now my son lives in a house that I purchased for that purpose, as a rental specifically for him. I don’t know what I will do for sure when when I am older. I think the best situation for him would be a residence with some supports, and only a small number of people living there, with private rooms. Finding that place is the hardest part. I might have to create it.
I have been speaking about day vs night and temps and how they actually effect all of us, cooler temperatures believe it or not effect parts of are brain that is not really understood! I personally do not think this has anything to do with medication! I think that the energy change from day to night and even the magnetic forces that change during that time have a real effect on are brain, some of us are very sensitive to this and some of us are too sensitive! To try and explain it in the simplist way I know it would be through animals if you have ever abserved horses at about sundown they become more active and bounce around I think in a way this is because this is when predators that hunt them are waking up and moving and horses like many animals get anxiety and appear more hyper and sensitive! It is now becoming known that temperature, lower temps actually do effect paranoia well lower the temps the higher the paranoia!
They do sound like sun downing. My son was told a couple of years ago, and do not know how accurate docs statement is, that dementia will most likely happen to him. Not sure how old your son is but any chance he could be screened for AD? Hope that is not the case.