I am just starting to notice this with my 95 year old father. No formal diagnosis but I think he has sun downing. Example: he gets up in morning, eats breakfast while reading newspaper. Goes to bathroom for number 2 and then goes for nap.. wakes up from nap late in the day and he thinks it’s morning all over again. He asks where is the newspaper and I tell him came 10 hours ago and you read it this morning. He then starts preparing oatmeal an boiling water for coffee at 6:30 pm !!! He eats then goes for his BM. It’s like watching Groundhog Day. It’s happened on 3 occasions In the last month. It occurs then next day he is ok. Weirdest thing I have ever seen. I talked about with him. Stress or tiredness seems to be the trigger. I know he has dementia and I plan to witness this again . Will probably get worst with time
Even if this is a really old thread it was still good. It's always nice to find out you are not the only caregiver with these same exact problems. I'm always learning on here.
After having taken care of my mother for five years, I had to be very careful to write down times when she had appointments, explain to her how much earlier we would have to leave to get there, get her started and plan for a trip to the bathroom before leaving and try to get her to eat a nice meal before leaving so she wouldn't get hungry while we were out. My case was more complicated because I do not drive and we had to take the bus everywhere. I had to plan to be down there waiting for the bus 10 minutes early because of the unpredictability of the bus, sometimes they came early, sometimes they came late. And I did hear a lot of complaining about having to sit and wait for the bus, then what do I do if we have sat there 10 minutes and then needs to use the bathroom again? Sometimes the whole plan would be blown to bits if the bus came too early. And I never knew how long we would be on the bus or how many other people they would have to drop off before we got there. Then I would hear comlaints and guilt trips about why she shouldn't drive anymore with the pain patch on.
Most of the problem mom had with waiting or long bus trips was caused by needing to go to the bathroom, or getting hungry while she was on the bus. I felt sorry for her that I had to put her through this, but now she is the nursing home and they are providing dependable transportation for her.
Also whenever mom would take a nap, she would not know what time of day it was or whether it was morning or evening, then scold herself for sleeping so long, when in acutality she hadn't been sleeping very long at all. I made sure that she had a good dependable watch that had big enough numbers for her to read.
The think that really bothered me the most was she would wake up in the middle of the night and think it was morning. If we had something to do the next day, she would come into my room several times in the night and ask if it was time to get up yet, then it would take me another half hour or hour to get back to sleep.
A lot of times she would fall asleep and forget about eating meals. She states that she is never hungry, then of course if I have her out somewhere then she will say she is hungry and needs something to eat. That is what I am most concerned about now, as they are thinking of sending her to Assisted Living with all the problems she has with time and disorientation and not wanting to eat regular meals. But, the law in North Dakota says she has to be in the place that provides the least amount of care for her needs (trying to keep medicare from going bankrupt I guess).
And yes, it is not wasted time sitting in the waiting room. I never thought it was wasted time, as I knew the time that mom would be around would be limited and I treasured every minute that I was with her. We would talk about her parents and grandparents and extended family, she would tell me stories from her childhood. I always took along crossword puzzles or a book to keep me busy if she falls asleep. Now this is all gone, as she is in the nursing home and all I here from her now is anger and complaints most of the time.
Dear Lynstudio, I totally agree with you on this. I never really knew how hard it was going to be taking care of my Dad with dementia. But when he lived with me for awhile, only then, did I realize the difficulty. But even so, I decided to do ALL that I possibly could. But the only other alternative when I could no longer do it, and he could no longer tolerate living with us, was assisted living. Which he finally started to enjoy being with others like himself. But HERE, is where I really received the most support. I was never judged in my decisions, only supported here. Good luck and hugs to all here who have decided with much difficulty and self sacrafice, to take in their loved ones, and have done the best they could, until they no longer could. May receive the encouragement and support you need on this site.
This is a forum where we, the caregivers can come to vent, share stories and support each other. Certainly we know we will be in this situation someday. Certainly we are aware of our elder loved ones difficulties and that is why we are taking care of them. We do not need to be chastised. It is just as sad and frightening to us to watch helplessly as they become more diminished. It is not at all easy. When I visit this site I receive the encouragement that I am not alone. That is the purpose.
My mother seems to think time has come to a stop. Getting her anywhere on time is a major accomplishment. It's as if time does not exist for her at all.
I am getting to an age where I may need some help at some point in my alarmingly not too distant future. It's a frightening prospect, made more so by the problems and attitudes I see reflected in the daily posts and resentments I read on this site. The last thing I want is to ever depend on my children for anything and I would certainly never expect them to empty their bank account to take care of me. The thought of living with them horrifies me as well even though I love them dearly. Even now, I sometimes get that "tone of voice" from one of them who doesn't agree with a decision or a comment I've made. So, from a nearly senior, I have a few comments:
First, if your parents are way too early now, they've probably always been too early. Or they get to the doctor's office in time and find out all of the other patients came early and lined up in front of them, so they're nervous about taking up your time or, as the article said, getting home for a valid reason. If you don't have the time or don't want to be involved, arrange for the Handicar or whatever service you have in your community that transports seniors free of charge, even for grocery shopping.
Second, don't take your parents into your home if they need extreme care or if you can't afford it, or if you don't have the time and patience and can't afford caregivers to come in and assist, or you just don't feel that you want to take on the burden. Once you take them in, it only gets worse and it's harder to move them back out or to make an alternative decision. If they don't have funds, the state will step in. If they do have funds, help them find the best way to utilize them for the most savings. It's a scary world out there and so much has changed since they were young. You too will face this dilemma one day so treat as you would like to be treated and try to remember the sacrifices they made for you when you are deciding their future. No one will give you a medal for allowing guilt to make your choices and feeling building resentments is like eating glass and waiting for the other person to die.
Third, you think you're frustrated and angry, look at it from the opposite view. They have lost driving privileges, feel trapped and dependent when they've been independent all their lives, beset by dozens of old-age conditions. I can only imagine what a bitter pill that is. How do you think they feel having to depend on you for everything, being treated like children which, unfortunately, many of them become and the more you treat them like children, the more like children they become -- just as you did when you were small.
Last, don't take them in and then expect your siblings to step up. Make sure the financial and caretaking agreements are in place before you commit yourself. If your siblings aren't willing to take the time, be sure and set up an account they can contribute to monthly to hire caregivers or errand runners so you don't feel pinned against a wall with no options. And don't step on their dignity. Consult them as equals whenever possible, not with that voice that tells them all of the power is yours. They probably already know that and are humiliated by it.
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Coping With an Elderly Loved One’s Distorted Sense of Time
leaving and try to get her to eat a nice meal before leaving so she wouldn't get hungry while we were out. My case was more complicated because I do not drive and we had to take the bus everywhere. I had to plan to be down there waiting for the bus 10 minutes early because of the unpredictability of the bus, sometimes they came early, sometimes they came late. And I did hear a lot of complaining about having to sit and wait for the bus, then what do I do if we have sat there 10 minutes and then needs to use the bathroom again? Sometimes the whole plan would be blown to bits if the bus came too early. And I never knew how long we would be on the bus or how many other people they would have to drop off before we got there. Then I would hear comlaints and guilt trips about why she shouldn't drive anymore with the pain patch on.
Most of the problem mom had with waiting or long bus trips was caused by needing to go to the bathroom, or getting hungry while she was on the bus. I felt sorry for her that I had to put her through this, but now she is the nursing home and they are providing dependable transportation for her.
Also whenever mom would take a nap, she would not know what time of day it was or whether it was morning or evening, then scold herself for sleeping so long, when in acutality she hadn't been sleeping very long at all. I made sure that she had a good dependable watch that had big enough numbers for her to read.
The think that really bothered me the most was she would wake up in the middle of the night and think it was morning. If we had something to do the next day, she would come into my room several times in the night and ask if it was time to get up yet, then it would take me another half hour or hour to get back to sleep.
A lot of times she would fall asleep and forget about eating meals. She states that she is never hungry, then of course if I have her out somewhere then she will say she is hungry and needs something to eat. That is what I am most concerned about now, as they are thinking of sending her to Assisted Living with all the problems she has with time and disorientation and not wanting to eat regular meals. But, the law in North Dakota says she has to be in the place that provides the least amount of care for her needs (trying to keep medicare from going bankrupt I guess).
And yes, it is not wasted time sitting in the waiting room. I never thought it was wasted time, as I knew the time that mom would be around would be limited and I treasured every minute that I was with her. We would talk about her parents and grandparents and extended family, she would tell me stories from her childhood. I always took along crossword puzzles or a book to keep me busy if she falls asleep. Now this is all gone, as she is in the nursing home and all I here from her now is anger and complaints most of the time.
First, if your parents are way too early now, they've probably always been too early. Or they get to the doctor's office in time and find out all of the other patients came early and lined up in front of them, so they're nervous about taking up your time or, as the article said, getting home for a valid reason. If you don't have the time or don't want to be involved, arrange for the Handicar or whatever service you have in your community that transports seniors free of charge, even for grocery shopping.
Second, don't take your parents into your home if they need extreme care or if you can't afford it, or if you don't have the time and patience and can't afford caregivers to come in and assist, or you just don't feel that you want to take on the burden. Once you take them in, it only gets worse and it's harder to move them back out or to make an alternative decision. If they don't have funds, the state will step in. If they do have funds, help them find the best way to utilize them for the most savings. It's a scary world out there and so much has changed since they were young. You too will face this dilemma one day so treat as you would like to be treated and try to remember the sacrifices they made for you when you are deciding their future. No one will give you a medal for allowing guilt to make your choices and feeling building resentments is like eating glass and waiting for the other person to die.
Third, you think you're frustrated and angry, look at it from the opposite view. They have lost driving privileges, feel trapped and dependent when they've been independent all their lives, beset by dozens of old-age conditions. I can only imagine what a bitter pill that is. How do you think they feel having to depend on you for everything, being treated like children which, unfortunately, many of them become and the more you treat them like children, the more like children they become -- just as you did when you were small.
Last, don't take them in and then expect your siblings to step up. Make sure the financial and caretaking agreements are in place before you commit yourself. If your siblings aren't willing to take the time, be sure and set up an account they can contribute to monthly to hire caregivers or errand runners so you don't feel pinned against a wall with no options. And don't step on their dignity. Consult them as equals whenever possible, not with that voice that tells them all of the power is yours. They probably already know that and are humiliated by it.