The notion of time is an acquired taste. We are not born with it, kids spend years trying to deal with it properly (i.e. to their parents' satisfaction), some people never learn to manage it, and dementia patients lose it even if they were previously very organized and excellent planners like my mother.
As a caregiver though, I was thoroughly convinced that time exists and must be obeyed. Silly me! In my defense, I must say that I was coming from a professional career and that I do have a bit of a reputation as a control freak. Moving in with my mother who has dementia was quite a lesson in how people who have no notion of time, live. It can definitely be done and actually, once you learn to do it, it changes your whole perspective on day-to-day living. Nothing is stable and making plans is almost a gratuitous exercise.
When I first arrived, my mother's physical condition was quite poor so she had many appointments for doctors, tests, rehabilitation, etc. Unfortunately, her mental condition had deteriorated so much that I also had to take over the role of parent to my own mother. Initially it is a disconcerting feeling, but soon you realize that it is essential and you just get down to it. Every morning at breakfast, I would announce what visit we had that day (I never scheduled more than one per day so that she would not get totally stressed). An hour before we were scheduled to leave, I would go in to help her choose her clothes and get dressed. Then I would let her rest. At departure time minus 20 min., I would go to get her only to find that she had fallen totally asleep (she was taking a lot of meds for pain) and it would take more than 15 min. to get her to a semblance of "awake". At this point, I was literally dancing around trying to get us out of the house and on our way. I was snappish and brusque. My mother would get her "deer in the headlights" look, she was totally lost. Almost from one minute to the next, she could forget that we had an appointment.
Eventually we would get into the car and I would see that we weren't too late. (I come from Switzerland where we believe on being on time!!) I would heave a deep inner sigh of relief, then my mother would announce that we had to go back home: she was not feeling well or had to go to the bathroom again, etc. Usually this would happen about two miles from home and was due to fear of the unknown. With no recent memory, she would feel totally destabilized at the idea of going somewhere unfamiliar, or even familiar since she couldn't hold on to the idea of where we were going. My usual "because the doctor said to" was not always successful. I would try to cajole/bully her into waiting until we got to the appointment (nothing is really very far from where we live), but she would become panicky and we would often wind up returning home and missing the appointment. Some of my U-turns were less than smooth! I was doing neither of us any good: I was still driven by a clock that was becoming more and more meaningless and my mother could sense my tension and annoyance. We were having very unpleasant moments, all because of my notion of time.
Finally, as I adapted my mindset to my new situation, I realized that in our little world, the notion of time can be taken with a grain of salt. If we are late to a doctor's appointment, then we just have to sit in the waiting room longer; no one really minds and we have nothing to do for the rest of the day anyway... I now pack books for us to read in case this happens and we take little walks if my mother gets stiff. If we are late to the senior gym class, the instructor just smiles broadly at us and thanks us for coming; classmates move seats so that we can have two seats together. If we are late to our occasional social luncheons, everybody hustles to make room for us and says how great my mother looks. They also give me a wink and whisper in my ear what a great job I am doing. Time such as I knew it, is becoming irrelevant. If we miss a gym class or a luncheon, it makes no difference since my mother won't even remember that we missed it. I am learning to live differently. I can't imagine trying to have a responsible outside job in this way, but I have come to realize that since I came here to help my mother live out her last years pleasantly, I should keep that in mind at all times.
I am convinced that the lack of memory causes the poor notion of time. How can you situate yourself if you cannot remember what just happened or what is supposed to happen soon? How can you get from one point in time to another with no memory? How can "cause and effect" exist when cause is completely forgotten by the time effect happens? It means that dementia patients believe that things happen for no apparent reason and that can be very scary.
Also, in my mother's case as for most, it is the short term memory that goes first. The long term memories from her youth are still there, creating a hodge-podge of ideas and concerns that seem very present and worrisome to her. I remember one day early on when my mother lowered her voice to confide in me that when "Maman" and "Papa" (her parents) died, the house would be "ours". I pointed out, yet again, that the house was hers, that she and my father had had it built 30 years ago, that her parents had never come to this country and had died years ago, and that my sister and I would inherit the house when she died and that we would worry about it then. She needn't worry.
It might sound a little brutal, I could just say "uh-huh", but in my thinking, much of her memory bank is a blank slate wiped clean by her TIA's or her stroke(s). When I explain things to her, I always try to put things in context and in a positive light, so that she can mull them over, without becoming alarmed. It's a repetitious job but I think that she is responding. Her short term memory is still gone, but her reasoning seems to be coming back. The other day, I was showing her the baby blanket I am making for my next grandchild and I said that I might like to add one more row of crochet. She actually looked at me and said: "Will you have enough wool?" Wow! What awareness! I was thrilled and, smiling in my heart, I said: "Probably not, we'll have to go to the store to get some." She was quite pleased , the knitting goods store is very familiar and she likes going there. (Can I even hope that this was the reason that she asked the question? ) The trip would be something that she could look forward to, if only she could remember it. On the other hand, this way she has a little jolt of pleasure every time I mention that we have to go or are on our way to the knitting goods store.
It's a strange way to live, I find I am becoming remarkably zen. As I let the importance of time drift away, my mother seems less fearful, more accepting of living in only the present moment.
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