How do you establish a schedule for a dementia patient who hates being tied to a schedule?

JoAnn29. I realize my reply on BarbBrooklyn's feed was long; so you may not have noticed that I said the doctors do not know what is wrong with her. She is under the care of an internist, a neurologist, and an endocrinologist. She has had blood work 10 times over, cat scans, MRIs, EEGs. Her blood sugar is under control. She is well past menopause at age 75. Infectious disease has been ruled out, as have vitamin deficiencies. The neurologist has interviewed my mom, my dad, and myself and has been issuing tests for my mom since July. The neurologist still has not given us a diagnosis, but lately, has hinted at the possibility of dementia. Thus the reason why I sought out an answer through this website.

Garden Artist. Hi. Yes, he is physically paralyzed from the knees down, but he does still drive. He also walks by propelling himself forward from his hips, but he can not stand still, or he will tip over. It is for that reason that he prefers not to cook. I agree that he probably needs a break from her, but he is afraid to leave her home alone after catching her trying to heat up soup in a ceramic mug on the stove. I do appreciate your suggestions though, and I will try to help him think of instances when he can go out briefly without her. And yes, my mom is and has always been as you described above. Unfortunately, my dad was a military man; so there is quite a clash of wills going on.

Sunny Girl1. Thank you. Yes, you have described my dad's situation perfectly. Do you think a timer and a note regarding what she's doing would help? Or should he just supervise her as she gets dressed?

Lealoni1. Thank you for understanding. She is under the care of a neurologist who has yet to prescribe anything--medication or otherwise. Although I have inquired about all that you mentioned, the neurologist works in a small town and is slow to respond to email or requests for an appointment. I researched routines for dementia patients for a number of weeks before posting my question. Routines seem to recommended for dementia patients, but I could not find specific examples of how to address the circumstances that my dad is dealing with. Do you think that any of my ideas would work? A note? A timer?

I do not do social media or blog or anything of the kind. I did not complete my profile because I like to keep my life private. I only asked the question because I was desperate enough for help to do so. My mother has not been formally diagnosed with dementia. In fact, the doctors do not know what is wrong with her. I suspect dementia. I am trying to help my father who is the one taking care of her. Without a diagnosis, it's hard to know what to do. I had read that a routine was good for patients with dementia, but the suggested morning, afternoon, and evening routines contain far too many activities for my mother to complete in a week, no less in a day. She was an artist and has always been very eccentric and a free spirit. She has always disliked schedules or feeling like anyone is trying to control her. Long before her memory problems started, she would routinely take the entire day to brush her teeth, stand me up for a lunch date, and not go to bed before 3 am. I just want to help my dad make his life a bit more manageable and help both of them enjoy each other again rather than listen to their constant bickering. Here's a typical example of what they bicker about on a daily basis. About 1 pm yesterday, he asked my mother to get dressed so that they could go to lunch and a matinee. She went to her room and called me. We spoke for about an hour before he came in and said, "I thought you were getting dressed." Since they do not keep a regular schedule, I had no idea that she was supposed to be getting dressed for the movies, or I would not have talked to her for 1 hour. She says, "I'm talking to our daughter." He says, "If we don't leave soon, we won't be able to make the movie." She says to me, "I have to go. I'm being threatened." I say, "Dad is not threatening you. He is explaining to you how movies work. " This sort of thing happens daily, and has been happening for about 20 years, but a few months ago, she began experiencing cognitive symptoms that scared even her; so she asked my dad to take her to the doctor, something she has always refused every time we brought it up before. Since that time, things have worsened. My dad is exasperated. He is older than her, and needs outside stimulation. If he just did what my mom wanted to do, they wouldn't leave the house for months on end. He is also paralyzed, and my mother has refused to cook for about 20 years; so going out to eat is easiest for them and something that they do daily. I suspect that on this particular day, by the time she got to her bedroom, she had forgotten what she went in there for. I didn't know if maybe putting a note in her hand that said, "Get dressed. You are going to the movies" would have helped, or maybe escorting her to the bedroom, reminding her she's supposed to get dressed, and then setting a timer? I just wanted to give my dad some ideas of things to try. And yes, giving her a 5 minute warning makes her angry and slower. Giving her a 30 minute warning usually does too. One has to be very strategic, measuring her mood, calculating how important being on time is, not giving more than 1 or 2 warnings a day, avoiding warnings at all if you gave them yesterday. Here's another recent example. On Thanksgiving, my dad told her she had 1 hour to get dressed before they had to leave. After 2 hours, he told her they were supposed to leave 1 hour ago. They arrived at their friends' for Thanksgiving dinner 1 hr late, and my mother tells her friend that it's my dad's fault they're late because he lied about the time and told her she had 2 hours to get ready when she really only had 1 hour. They have clocks in every room of the house, and at least 3 in their master suite where she was getting ready. Medicare will not pay for anyone to come into the home and help my dad without a formal diagnosis, and my brother and I both live and work out of state, and our jobs will not allow us to telecommute. My parents will not move to where we live.

Thank you. Yes, I posted a long reply on the feed from BarbBrooklyn. That will provide you with more information.

There was no need to nit-pick at my language. I was not implying that I wanted to tie my loved one to a schedule. Rather, I was trying to express that this person didn’t like schedules or routines long before they began experiencing memory issues. Your answer was insensitive and judgemental. You have no idea what my individual situation is, but rather than ask for more information, you judge me. I asked the question out of sheer desperation, and your response was not understanding or helpful at all. Please refrain from responding to any other questions I might ask.