For people with dementia the time of day the month in the year cease to have any meaning. When you are lost in the moment to moment segments of your life you can't really keep track of the bigger picture. When you factor in the monotony of institution living this is even more complicated. So it is with Mom.
Last night we got a gleeful phone call at 10:20 P.M. from my mother. Happy New Year! greeted my worried ear. In Mom's mind, it is now January and that was the thing we should be saying. I tried to convince her that Rosh Hashanah is still a month away and that the other New Year falls in the winter and that this is still summer. But, to no avail. Either she dreamed something and awakened at 10:20, or was lost in some thoughts of previous years--hard to figure what is really going on in her mind these days. I suppose I should be happy. At least she sounded okay and wasn't anxious or upset by her surroundings or asking about coming home.
Happy New Year, Mom!
Wednesday, August 15, 2012
Monday, July 23, 2012
Take What You Can Get
My lifelong friend's mom is in her "end stage" as I write. The family is sitting in a vigil awaiting her death. Her mom has dementia and has not been the smart and personable person they used to know for quite some time. In some ways her death will be a blessing for all concerned. And yet, every death is mourned by the people who remain. My friend is now nostalgic for the days that she sat with her mother and repeated each conversation tidbit ten times. One day changes everything in our lives.
I now have a different slant on MY mother's condition. Of course I always have known that some day I will deal with her death and that I will mourn the loss for the rest of my days. But, now I also treasure the times that my mother can still converse and occasionally really interact in the "old" way. Lately my mother has been a little sharper and interactive thanks to a new psychiatrist's view of medicating her anxiety. She is more alert and even has a shred of her sense of humor back, which was always an integral part of her personality and buried in the haze of medication. I am not imagining these changes, or putting more importance on them. I do not delude myself into believing that anything will be constant--I know that one minute she can be so lucid, and the next she will slide back into the clouded mental state of dementia. I know that some day I will be in my friend's position. But, for now I will enjoy the momentary glimpses of the mother I once knew and take what I can get.
I now have a different slant on MY mother's condition. Of course I always have known that some day I will deal with her death and that I will mourn the loss for the rest of my days. But, now I also treasure the times that my mother can still converse and occasionally really interact in the "old" way. Lately my mother has been a little sharper and interactive thanks to a new psychiatrist's view of medicating her anxiety. She is more alert and even has a shred of her sense of humor back, which was always an integral part of her personality and buried in the haze of medication. I am not imagining these changes, or putting more importance on them. I do not delude myself into believing that anything will be constant--I know that one minute she can be so lucid, and the next she will slide back into the clouded mental state of dementia. I know that some day I will be in my friend's position. But, for now I will enjoy the momentary glimpses of the mother I once knew and take what I can get.
Monday, July 16, 2012
My mom is becoming a novelist
Pen really hasn't been put to paper nor has anything been composed on the computer, yet mom is now fabricating stories of her daily activities. Sometimes I can't help but wonder if this is far more interesting for her than the boredom and solitude that comes with living in a nursing facility.
Tonight mom called at nearly 9:00 PM with the happiest tone in her voice. She went on to tell me that she had an interesting day because she decided to visit her friends at the center next door and had lost all sense of time. Since it was getting late, the friend's center offered her a room for the night. She told me happily of seeing some friends that she hadn't seen in awhile and that it was a very good day. As we were getting off the phone, she believed she was going to be served dinner. I hinted that it was rather late for dinner and that bedtime was soon approaching, but I dropped this line of conversation because I have finally learned to just go along with the story that is being told. Arguing or trying to be rational is a futile exercise for us both these days. This lesson has taken me a very long time to learn!
My teaching experience with little children who often blend fantasy and reality does not serve me well on a night like this. Most little children can be taught the differences between the two while preserving their imagination. We reveled in Scott's wild stories of Larry going to work at the Bronx Zoo in a helicoptor, but we also knew he'd outgrow it. It also went perfectly with his creative personality and his flair for drama. His kindergarten teacher admired it but made it clear to me that we needed to help him discern the differences in order for him to grow properly. Thankfully, he was successful.
But, mom's fantasy world is something completely different. It serves her for the moment but it brings me to a dark, unhappy place. I'm glad that she thinks she had a good day, but I know the truth. I know that she was bored and unable to remember anything that really happened today. I know that the person who raised me would be flabbergasted by such tall tales. I know that she would be mortified if she really knew what is happening. I know that her days of remembering a genuine good time have long since past and "making up stories" ( her phrase from my childhood about fabrications) is just the coping mechanism for a life that she no longer recognizes.
Tonight mom called at nearly 9:00 PM with the happiest tone in her voice. She went on to tell me that she had an interesting day because she decided to visit her friends at the center next door and had lost all sense of time. Since it was getting late, the friend's center offered her a room for the night. She told me happily of seeing some friends that she hadn't seen in awhile and that it was a very good day. As we were getting off the phone, she believed she was going to be served dinner. I hinted that it was rather late for dinner and that bedtime was soon approaching, but I dropped this line of conversation because I have finally learned to just go along with the story that is being told. Arguing or trying to be rational is a futile exercise for us both these days. This lesson has taken me a very long time to learn!
My teaching experience with little children who often blend fantasy and reality does not serve me well on a night like this. Most little children can be taught the differences between the two while preserving their imagination. We reveled in Scott's wild stories of Larry going to work at the Bronx Zoo in a helicoptor, but we also knew he'd outgrow it. It also went perfectly with his creative personality and his flair for drama. His kindergarten teacher admired it but made it clear to me that we needed to help him discern the differences in order for him to grow properly. Thankfully, he was successful.
But, mom's fantasy world is something completely different. It serves her for the moment but it brings me to a dark, unhappy place. I'm glad that she thinks she had a good day, but I know the truth. I know that she was bored and unable to remember anything that really happened today. I know that the person who raised me would be flabbergasted by such tall tales. I know that she would be mortified if she really knew what is happening. I know that her days of remembering a genuine good time have long since past and "making up stories" ( her phrase from my childhood about fabrications) is just the coping mechanism for a life that she no longer recognizes.
Thursday, May 17, 2012
Who's Crying Now?
When my brother and I were children there were times that playtime ended with one of us crying. We'd cry because we lost the game, cry because it was getting dark and had to come in for bed, or cried because one of us was teasing the other. When my own kids were growing up I could sometimes figure out how long it might be until someone was crying, mainly by the moods/teasing/noise/or sixth sense that all mothers develop.
So, I have experience with crying. But now, I have no ammunition for my mother's crying. She is becoming increasingly aware of her memory loss. I really try to soften the blow, but too many times there is a visit, phone call, doctor's appointment or conversation that she forgets. When it becomes apparent that she has no recollection of the event she is amazed that she could forget such a thing. She recently asked me if any of my children are dating anyone special. I told her that Dan and Scott are already married. She wanted to know why she hadn't been to the weddings and I reluctantly told her that she attended Dan and Jill's wedding and walked down the aisle with Scott and Jeremy. Of course she was surprised to have forgotten such an event. And she cried.
This morning we had a similar discussion. She asked about our family and I named each member with their ages and where they live. She asked me why she doesn't remember any of this and I simply said that the problem sometimes comes with age, but she's in better shape than many people her age. And she cried. "What's the point of living this long if I can't remember any of these things?", she asked. I am baffled for an answer. All I hear is her anxiety and desperate attempt to hold on to the information and identity that is rapidly being sapped from her. How do I answer and make her feel better when I'm the one that cried?
So, I have experience with crying. But now, I have no ammunition for my mother's crying. She is becoming increasingly aware of her memory loss. I really try to soften the blow, but too many times there is a visit, phone call, doctor's appointment or conversation that she forgets. When it becomes apparent that she has no recollection of the event she is amazed that she could forget such a thing. She recently asked me if any of my children are dating anyone special. I told her that Dan and Scott are already married. She wanted to know why she hadn't been to the weddings and I reluctantly told her that she attended Dan and Jill's wedding and walked down the aisle with Scott and Jeremy. Of course she was surprised to have forgotten such an event. And she cried.
This morning we had a similar discussion. She asked about our family and I named each member with their ages and where they live. She asked me why she doesn't remember any of this and I simply said that the problem sometimes comes with age, but she's in better shape than many people her age. And she cried. "What's the point of living this long if I can't remember any of these things?", she asked. I am baffled for an answer. All I hear is her anxiety and desperate attempt to hold on to the information and identity that is rapidly being sapped from her. How do I answer and make her feel better when I'm the one that cried?
Sunday, March 18, 2012
The Beat Goes On
The same conversation is part of my day, almost every day.
Mom: What is this place I'm in?
Me: It's a nursing facility.
Mom: Why am I in a place like this?
Me: We were following the doctor's suggestion that you need a safe place since you weren't safe at home any more.
Mom: I think that's blown out of proportion-- I was doing fine at home. So what's the story, I need to stay here forever?
Me: We don't know that--for now it's serving the purpose of you having people who take good care of you and make sure that your meals are cooked and that you're safe. You know that's the most important thing for us to know.
Mom: I'm very lonely here-- I don't know anyone. I just got here.
Me: Frank, your brother is on the same floor--he's right down the hall.
Mom: Really? How do I find him?
Me: Turn left out of your room and then go to the end of the hallway.
Mom: I haven't seen him here before.
Me: I think you have-- you probably ate dinner with him last night.
Mom: I really don't remember that.
Me: Mom, we love you and want you to be safe--this isn't easy for any of us, but you know that you had to do the same thing for your father, and we all just have to do what we know will make someone safe.
Mom: Yeah, I know, but I don't have to like it.
We sometimes go this route 2 or 3 times within a conversation, or in a morning.
I am blown away by the fact that life must be so frightening for her and others with dementia. She truly thinks that she's awakening in a different, unfamiliar place each day with no recollection of arriving there. It is the most painful to hear her sounding so afraid and tentative. This is not the person who was so self-assured and sometimes fearless.
The beat goes on, but it's a song without a happy ending.
Mom: What is this place I'm in?
Me: It's a nursing facility.
Mom: Why am I in a place like this?
Me: We were following the doctor's suggestion that you need a safe place since you weren't safe at home any more.
Mom: I think that's blown out of proportion-- I was doing fine at home. So what's the story, I need to stay here forever?
Me: We don't know that--for now it's serving the purpose of you having people who take good care of you and make sure that your meals are cooked and that you're safe. You know that's the most important thing for us to know.
Mom: I'm very lonely here-- I don't know anyone. I just got here.
Me: Frank, your brother is on the same floor--he's right down the hall.
Mom: Really? How do I find him?
Me: Turn left out of your room and then go to the end of the hallway.
Mom: I haven't seen him here before.
Me: I think you have-- you probably ate dinner with him last night.
Mom: I really don't remember that.
Me: Mom, we love you and want you to be safe--this isn't easy for any of us, but you know that you had to do the same thing for your father, and we all just have to do what we know will make someone safe.
Mom: Yeah, I know, but I don't have to like it.
We sometimes go this route 2 or 3 times within a conversation, or in a morning.
I am blown away by the fact that life must be so frightening for her and others with dementia. She truly thinks that she's awakening in a different, unfamiliar place each day with no recollection of arriving there. It is the most painful to hear her sounding so afraid and tentative. This is not the person who was so self-assured and sometimes fearless.
The beat goes on, but it's a song without a happy ending.
Wednesday, January 18, 2012
The RX for the RX
When we visited Mom last week I had the opportunity to meet with her psychiatrist. She was open to my assessment of Mom's behavior and mood. I told her that I was concerned by her increasing time in bed each morning and the sleepiness that just overtakes her on most days. We also discussed the anxiety that prevails each evening and leads to numerous phone calls about going home.
The psychiatrist was open to "tweaking" the anti-anxiety dosage in order to yield a less sleepy beginning to each day. She also suggested that we monitor the change and report back to her in about a week. So far, I have seen no significant change in the sleepiness or the nighttime anxiety. This afternoon I had a conversation with Mom's head nurse who told me that the new medication schedule just is not working. Mom is "testy" and has alienated several residents, including someone at her dinner table who now is afraid to eat with her! The nurse made it clear that she will report to the Dr. that the meds need to be readjusted because her mood is untenable.
I am at a loss. I don't want Mom to be sleeping until noon each day--she's then too lethargic/ misses her shower/ needs to be rushed to get dressed in order to be ready for lunch--it's just not a good scenario. I also don't want people on her floor to be afraid of her and I don't want that meanness to be the most visible part of her personality, since it never was her manner in the past.
So, what do we do? We need a prescription for the prescriptions. My mother who used to just take tylenol or excedrin for a headache now is a pharmacy of drugs that have helped to alter her behavior almost as much as the dementia has. I will leave the solution to the professionals. But at this point, I may need a tylenol for the headache that keeps creeping over my eyes.
The psychiatrist was open to "tweaking" the anti-anxiety dosage in order to yield a less sleepy beginning to each day. She also suggested that we monitor the change and report back to her in about a week. So far, I have seen no significant change in the sleepiness or the nighttime anxiety. This afternoon I had a conversation with Mom's head nurse who told me that the new medication schedule just is not working. Mom is "testy" and has alienated several residents, including someone at her dinner table who now is afraid to eat with her! The nurse made it clear that she will report to the Dr. that the meds need to be readjusted because her mood is untenable.
I am at a loss. I don't want Mom to be sleeping until noon each day--she's then too lethargic/ misses her shower/ needs to be rushed to get dressed in order to be ready for lunch--it's just not a good scenario. I also don't want people on her floor to be afraid of her and I don't want that meanness to be the most visible part of her personality, since it never was her manner in the past.
So, what do we do? We need a prescription for the prescriptions. My mother who used to just take tylenol or excedrin for a headache now is a pharmacy of drugs that have helped to alter her behavior almost as much as the dementia has. I will leave the solution to the professionals. But at this point, I may need a tylenol for the headache that keeps creeping over my eyes.
Thursday, December 15, 2011
Happy 87th Birthday
Dearest Mom,
I know that your birthday was December 2nd but it's taken me this long to write to you because I needed time to process how I feel about another year that has passed. We celebrated your birthday with a special lunch, cake, balloons and presents--much like so many birthday that have come before. Your nearest and dearest who were able to attend were there. You seemed really happy to have the day spent in this way and we were happy for the opportunity to make you feel like "queen for a day." Before I even got home you left a message on my machine that said " it would have been nice to have you at least call me since today is my birthday."
I have a new mantra for all the upcoming special days that we share--if you look happy at the moment, then I've done a good thing. No longer will I agonize over the memories of the time that will elude you-- I will learn to hang onto those memories for both of us. I will document your smile in pictures and I will try to replay your praise for my efforts in my head to ward off the feelings of guilt and sadness that always follow our time together. I will stop myself from asking you "remember when..."-- I remember when and that will have to be enough.
I know that your birthday was December 2nd but it's taken me this long to write to you because I needed time to process how I feel about another year that has passed. We celebrated your birthday with a special lunch, cake, balloons and presents--much like so many birthday that have come before. Your nearest and dearest who were able to attend were there. You seemed really happy to have the day spent in this way and we were happy for the opportunity to make you feel like "queen for a day." Before I even got home you left a message on my machine that said " it would have been nice to have you at least call me since today is my birthday."
I have a new mantra for all the upcoming special days that we share--if you look happy at the moment, then I've done a good thing. No longer will I agonize over the memories of the time that will elude you-- I will learn to hang onto those memories for both of us. I will document your smile in pictures and I will try to replay your praise for my efforts in my head to ward off the feelings of guilt and sadness that always follow our time together. I will stop myself from asking you "remember when..."-- I remember when and that will have to be enough.
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