I left my father who has dementia (moderate) for 1.5 hours (while he slept) to do important pre-Thanksgiving errands that I couldn't do with him. I had taken him on my morning errands for 2 hours but he was tired so I took him home to take a nap. I wrote on the white board that I would be back at 5:00 pm. Even though he has Sundowners, he still knows how to look at a clock...and read the board.
However, when I came home he was gone. I had taken his car so he wouldn't drive it. I was frantic. I looked for about an hour, leaving 5 messages on the other caregiver's phone...just in case he took my father with him. SInce he is on vacation and would have left a note I doubted my father was with him but all I was asking him to do was to let me know one way or the other if he was with him or not. He never answered my calls.
Just when I was about to call the police, I look up and see my father with his two sticks walking in the dark down the street towards the house. His walking his very sketchy mind you, so he shouldn't be walking in the dark...especially by himself.
Of course I was upset when I saw him. Who wouldn't be? Especially because the night before he had a really bad evening and lost all understanding of what he was watching on TV (he rarely watches it anyway), nor could he complete a single thought. He was really scared and agitated over this. I calmed him down, and didn't cry in front of him but did so later.
So you can imagine why, upon discovering he was gone, that the worst thoughts would have come into my head when I couldn't find him. He told me he just wanted to walk over to the pizza place to eat something. (He is ALWAYS eating...every two hours 24/7) I asked him why he didn't leave a note. And clearly he also forgot that we were going out to dinner. With him now, everything is immediate. Dementia patients are very selfish, I have learned and that is certainly true of my father. If I don't do what he wants right THEN he gets upset. No point telling him we're going in 10 minutes or 30 minutes or anything else. He will just forget. So I am constantly at his beck and call.
Anyway, my brother-in law, aging hippie that he is, proceeds to tell me in his superior "nothing in this life bothers me" voice that I shouldn't have got upset with my father. That I had "shamed him" by getting upset and how could I do that? REALLY????
I told him, "Look his mind is mush. I have to make sure he doesn't risk his life again, freak out myself, the neighbors and have the police out looking for him. What if they think we are abusing him? What will happen to him then? And maybe his mind can't remember but his emotions will...he tends to remember anything associated with emotions." He then continued to lecture me. This is a guy who lives in a continual state of Hindu nirvana ...I call him "Mr Oblivious." His wife (my stepsister) acts calm but is a boiling pot of seething rage. She once pulled a knife on me. She is angry and frustrated because she has to handle "real life" while Mr. Seventh State of Bliss talks about the next world as though he has already checked out.
Anyway, in order not to say or do anything I would regret, I told simply told him. "You are saying the wrong thing at the wrong time and I can't talk to you anymore." Then i hung up.
And I am supposed to take my father to their house for Thanksgiving tomorrow. Not going to happen. Someone else will have to take him. I am staying put and and away from this crazy dysfunctional family that makes me wish I was born an only child.
And there you have it. A full-on vent. Thanks for listening,
Do you have a day program in your area for people with dementia? My mom goes to one Monday through Friday for about six hours a day. This allows me some time to myself and I would not be able to do this without the program. It provides me very important respite time. When mom reaches the point of refusing to go, then it will be time for her to go to a facility.
One interesting thought that no one seems to consider in all this (not you guys) and that is this: My brother in law and his sister keeping beating the drum "Treat him as an adult...he still has his dignity and core sense of being after all." I actually agree with them on that. Yet by getting upset with him when he disappeared into the dark—shaky legs, no sense of day or time, and all—I WAS treating him as an adult. More aptly, I was treating him like I would treat any PERSON that I cared about who did something completely foolish and dangerous to their health. Did I hope on one level (besides it being an understandable instinctive reaction in the situation), that by letting myself express my honest and true emotions it would make what he did memorable—as in he would associate putting himself in danger (and causing others fear and stress) with an unpleasant emotion? Yes. While I know he is not a child and, as one poster said, making an emotional impact may not help because he truly doesn't have the cognitive ability to not repeat the same action, still the reality is this: He just cannot do this again.
Because the way things are now it probably will happen again. The other caretaker will leave him for hours that I know. He has left him for 16 hours at a time...from 7:00 pm when he goes to bed to11:30 the next morning. And my sister--who runs the show—is okay with this. I am not. I should also mention that this live-in caregiver, who is a pharmacist by trade, is mentally ill. He has severe OCD and some paranoia thrown in. He TALKS incessantly (once for 3 hours non-stop) and won't shut up. I literally have to walk out of the room and then, of course, he gets offended that you don't want to listen for 3 hours to his right-wing conspiracy theories and EVERYTHING that is wrong with the world. He is the most negative, fear-filled person I have ever known. I tried to get rid of him, but it was decided that the emotional impact on my father would be greater than the mental abuse he inflicts upon him.
But that is another post that I will have to write later.
For now, I will have to tell my sister that perhaps it is time to put my father in a nursing home—as loathe as I am to even consider this. No one wants to do this—for all the reasons we already know. How else will he be safe if we don't do this? Either that, or she will have to hire another full-time caretaker who will NEVER leave him alone. I only work 3 days a week. (All I can handle between my taking care of my father and his crazy, messed-up pharmacist carertaker.) I have two other jobs as well—writer and eBay store owner). If they are live-in caretakers (one or two) they will only cost half of what they would if they came in during the day. And there are some good agencies out there who could, as one owner of an agency said, "Supply us with people who couldn't consider doing anything else for a living." (Not the case with the pharmacist who is frustrated and angry with himself for his inability to make it in the real world and only does this by default.)
Thoughts?
There are a number of assisted living facilities where you will find a cognitive therapy program, designed to help slow down the progression of dementia disorders.
This might help.
It sounds as if Dad is at a point where you may not be able to leave him alone. This is very, very hard to determine. My mother (93) is OK for short periods alone, and my sister leaves a note about when she will be back. I'm less comfortable leaving her alone when she stays with me, because she is a lot less familiar with the surroundings here. For many years of his dementia my husband could be left alone briefly if he was watching television. I always left him a note. Then he reached a point when leaving him alone even for 20 minutes was not safe. We don't want to totally give up our freedom of movement, but we also don't want to do something unsafe, and it is really hard to decide what is appropriate.
I'm glad to see that you left a note for Dad. That is a good practice, but it may be that he has reached a point where that isn't going to be enough. I know that is VERY limiting for the caregiver. I'm sorry. :(
As for getting very upset and fussing at your Dad, I've done that too. We hope that a huge emotional fuss will make an impression and help them remember. I am not sure that is really true ... it didn't really seem to work that way for me ... but I sure understand the instinct to do it.
You already know that your stepsister and brother-in-law have views that you do not share, and advice you do not respect. Let their crazy rants wash right over you. You don't have to justify anything to them.
I hope you have a peaceful and pleasant Thanksgiving you can enjoy and remember!