Saturday, May 2, 2020
Final Update
Update to close the story of my mother. Mom has passed away. She was progressively worse over time, forgetting everyone and everything, including her own identity. Eventually, she began to stash food in her cheeks when she was being fed. One of those times, she inhaled her food and ended up with pneumonia from the inhalation. She passed from pneumonia in June of 2016. I will miss her.
Wednesday, January 1, 2014
January starts a New Year
I haven't updated the blog in a while. There isn't really that much new to report.
Mom continues to slide into the Alzheimer's Disease fog. She is settled in to her new surroundings. She sleeps a lot during the day. She doesn't talk, but she will giggle sometimes. She does not know her own name, has little awareness of passing time, cannot follow a story, a TV show, or a game. Although she smiles in greeting when I walk through her door, she seems unaware of our relationship. If I ask her if she knows me, she smiles and shakes her head. No. Ah, well.
She wanders around at night, as she did when she was with us. She enters other residents rooms and tidies them up -- even at 3 am and sometimes she wakes the resident. The nurses say she is cheerful, but a handful with her wandering. She now has a night-owl roommate that clues the nursing staff in as soon as Mom goes off on an adventure -- so they can intervene before she has the entire floor awake. So far, they have not alarmed her bed, as they don't want her to just stay in bed 24/7. They have put an alarm anklet on her, so if she goes to the door or elevator or other "dangerous" area she sets off the alarm. Because she has swapped night and day, she dozes most of the day. She has to eat pureed foods now, as she can no longer remember to chew her food and chokes at the slightest provocation. So far, she can still feed herself. She cannot dress herself, and wears diapers.
Alzheimer's is such a nasty disease.
Mom continues to slide into the Alzheimer's Disease fog. She is settled in to her new surroundings. She sleeps a lot during the day. She doesn't talk, but she will giggle sometimes. She does not know her own name, has little awareness of passing time, cannot follow a story, a TV show, or a game. Although she smiles in greeting when I walk through her door, she seems unaware of our relationship. If I ask her if she knows me, she smiles and shakes her head. No. Ah, well.
She wanders around at night, as she did when she was with us. She enters other residents rooms and tidies them up -- even at 3 am and sometimes she wakes the resident. The nurses say she is cheerful, but a handful with her wandering. She now has a night-owl roommate that clues the nursing staff in as soon as Mom goes off on an adventure -- so they can intervene before she has the entire floor awake. So far, they have not alarmed her bed, as they don't want her to just stay in bed 24/7. They have put an alarm anklet on her, so if she goes to the door or elevator or other "dangerous" area she sets off the alarm. Because she has swapped night and day, she dozes most of the day. She has to eat pureed foods now, as she can no longer remember to chew her food and chokes at the slightest provocation. So far, she can still feed herself. She cannot dress herself, and wears diapers.
Alzheimer's is such a nasty disease.
Friday, June 7, 2013
Mom is Doing Great!
Mom has been living in the Nursing Home for nearly two months, and she seems to have really improved. She is HAPPY, and that makes me happy.
There is so much for her to do there! She is always surrounded by people, and that is really good for her. She goes to the various activities, and even if she does not always actively participate, she is there, and surrounded by others who are having fun, and it stimulates her to be more active. I was amazed to discover that she actually won a prize at Bingo. She is talking a little now -- a few words here and there -- and seems so much more alert than before. I am sure that it is a direct result of all the activity surrounding her. She had always been highly resistant to any organized activities, and had flown into terrible temper tantrums if I even suggested visiting the local senior center. What a change!
The staff members are really very nice and so are the other residents. All the residents I've spoken with are delighted to be where they are, and love the place. My Mom's roommate has been there three years, and says it is the nicest place she has ever been. She is the same age as Mom, and is very active -- despite being confined to her wheelchair.
Mom recently changed rooms and is now on the 2nd floor. She still wanders, but they have an alarm system and Mom wears an anklet that sets off the alarm if she tries to go into the elevator or off the floor. They are very aware of the various needs of dementia patients, and actually have some special activities planned for the late afternoon "sundowning" times, when many Alzheimer's patients seem to have greater confusion and disorientation periods.
There is so much for her to do there! She is always surrounded by people, and that is really good for her. She goes to the various activities, and even if she does not always actively participate, she is there, and surrounded by others who are having fun, and it stimulates her to be more active. I was amazed to discover that she actually won a prize at Bingo. She is talking a little now -- a few words here and there -- and seems so much more alert than before. I am sure that it is a direct result of all the activity surrounding her. She had always been highly resistant to any organized activities, and had flown into terrible temper tantrums if I even suggested visiting the local senior center. What a change!
The staff members are really very nice and so are the other residents. All the residents I've spoken with are delighted to be where they are, and love the place. My Mom's roommate has been there three years, and says it is the nicest place she has ever been. She is the same age as Mom, and is very active -- despite being confined to her wheelchair.
Mom recently changed rooms and is now on the 2nd floor. She still wanders, but they have an alarm system and Mom wears an anklet that sets off the alarm if she tries to go into the elevator or off the floor. They are very aware of the various needs of dementia patients, and actually have some special activities planned for the late afternoon "sundowning" times, when many Alzheimer's patients seem to have greater confusion and disorientation periods.
Saturday, March 30, 2013
From Rehab to the Nursing Home
After a couple of weeks having Mom in the Rehab Center, we have made a decision to transfer Mom from Rehab to the Resident portion of the Home.
Although she can now slowly walk with the aid of a walker, she still has problems with her balance. She can still feed herself, but now has to have soft, pureed foods. She is totally incontinent, as she was here. They have done some profiling on her and determined that she is entering the severe stage of Alzheimer's Disease. She almost never speaks, then only one syllable words or sounds. She needs cues for every activity. Someone sits with her to remind her how to eat. She does not understand the nurse call button, despite frequent reminders from the staff and from me. She no longer knows my name, and only twice in the last month has she had any idea of who I am. She does not know my husband (of nearly 50 years) at all.
My goals in all of this are pretty simple. I want her to be safe and happy.
She is safer there than she could ever be here, with just me to watch out for her. She still wanders around all night, but with the 24-hour staffing, and no stairs, that is not a danger for her. Here, there are stairs everywhere.
She seems to be quite happy there, too. She has always been very extroverted and loves to be around people. There are lots of things going on around her, and although she no longer speaks more than a few words a day, she can watch and enjoy the hustle-bustle of the nurses, therapists, and other residents. There are lots of daily activities, and she enjoys observing, if not participating in, everything from bingo to crafts to concerts. She is always wearing a smile and the nurses report that she loves ice cream (which I've known for years!).
I've start completing all the necessary paperwork -- a mountain of forms and information to complete and compile.
The house is quiet at night, and I am finally catching up on some much-needed rest. The first night she was in the hospital, and the next day, I slept nearly 36 hours straight and still wanted more. Two years of sleeping day-after-day getting only 20-minute catnaps (adding up to less than 3 hours a night) were taking a toll on me and I was losing my own health. Even after more than two weeks of full nights, I'm still tired enough to want to sleep 11 hours a day. But my energy and zest for life are returning and I will soon be back to my pre-caregiver health.
Although she can now slowly walk with the aid of a walker, she still has problems with her balance. She can still feed herself, but now has to have soft, pureed foods. She is totally incontinent, as she was here. They have done some profiling on her and determined that she is entering the severe stage of Alzheimer's Disease. She almost never speaks, then only one syllable words or sounds. She needs cues for every activity. Someone sits with her to remind her how to eat. She does not understand the nurse call button, despite frequent reminders from the staff and from me. She no longer knows my name, and only twice in the last month has she had any idea of who I am. She does not know my husband (of nearly 50 years) at all.
My goals in all of this are pretty simple. I want her to be safe and happy.
She is safer there than she could ever be here, with just me to watch out for her. She still wanders around all night, but with the 24-hour staffing, and no stairs, that is not a danger for her. Here, there are stairs everywhere.
She seems to be quite happy there, too. She has always been very extroverted and loves to be around people. There are lots of things going on around her, and although she no longer speaks more than a few words a day, she can watch and enjoy the hustle-bustle of the nurses, therapists, and other residents. There are lots of daily activities, and she enjoys observing, if not participating in, everything from bingo to crafts to concerts. She is always wearing a smile and the nurses report that she loves ice cream (which I've known for years!).
I've start completing all the necessary paperwork -- a mountain of forms and information to complete and compile.
The house is quiet at night, and I am finally catching up on some much-needed rest. The first night she was in the hospital, and the next day, I slept nearly 36 hours straight and still wanted more. Two years of sleeping day-after-day getting only 20-minute catnaps (adding up to less than 3 hours a night) were taking a toll on me and I was losing my own health. Even after more than two weeks of full nights, I'm still tired enough to want to sleep 11 hours a day. But my energy and zest for life are returning and I will soon be back to my pre-caregiver health.
Friday, March 15, 2013
The Fall
Last Saturday evening, Mom fell in her bedroom. She wasn't able to tell anyone if/where she hurt, so the ambulance staff put her on a backboard and stabilized her neck just in case. After a slew of tests, the medical staff determined that she wasn't injured, but they discovered she had a kidney infection and kept her for a few days to treat it with IV antibiotics. She was released on Tuesday, and within an hour of the release, fell again. She was extremely unstable and kept lurching into the wall as she walked. I had to support her every step of the way. As she got to the top of the stairs, she just stopped and could not go on. I had been right behind her, holding her up for each step, but I'm not strong enough to carry her up the stairs. At the top of the stairs she sank forward onto her knees and was not willing or able to get up. Once again the EMTs came it took four of them to get her to her room, and we determined that she needed to go back into care. Again, she was uninjured, but terribly weak, essentially unable to move at all.
She is now in a Rehab Center to regain strength/mobility and, while there, try to recapture some basic skills, such as talking and eating on her own. We expect her to be there for a couple of weeks, until she can come home safely.
The staff members at the rehab center are very nice, and wonderful with the patients. Wednesday when I visited her, the Speech Therapist was working with mom, who has a great deal of difficulty in communication with anyone. Later, the Occupational Therapist came in for her visit. Each day, Mom will have sessions with Speech, Occupational and Physical Therapists. Yesterday during my visit, the activity center had a pianist playing for the patients for an hour in the afternoon. Mom enjoyed the concert.
She is now in a Rehab Center to regain strength/mobility and, while there, try to recapture some basic skills, such as talking and eating on her own. We expect her to be there for a couple of weeks, until she can come home safely.
The staff members at the rehab center are very nice, and wonderful with the patients. Wednesday when I visited her, the Speech Therapist was working with mom, who has a great deal of difficulty in communication with anyone. Later, the Occupational Therapist came in for her visit. Each day, Mom will have sessions with Speech, Occupational and Physical Therapists. Yesterday during my visit, the activity center had a pianist playing for the patients for an hour in the afternoon. Mom enjoyed the concert.
Thursday, February 28, 2013
The Night Watch Goes On
Mom still wanders around during the night. She still gets up around 11 pm and wanders out of her room and all over the house, talking and opening/closing doors, until around 4 am. She is totally unaware of this behavior.
The doors are alarmed, and the alarms make it possible for me to catnap during the night, because if she tries to go out, rather than just troll the hallways, the alarm will wake me.
We have security cams operating all the time, so we can easily catch up with her if she actually goes outside. Mostly, she just opens the front door and looks outside, then goes back to her room. Leaving the front door wide open.
Although that lets the heat out for a minute, we just get up, shut the door and that's that. Lately, however, a new concern has arisen.
The Bear. There is a large bear wandering around and we have found tracks just a couple of feet from the front door. He/she has been on the porch. The bear is large enough to reach 8 feet into the air and remove our suet feeders. Large enough to be a threat to a rather frail old lady. Curious enough to come into the house through the left-open door if he/she smells food. Dangerous enough that I don't want to be face-to-face with an annoyed bear at 2 am!
I think my catnaps at night have just ended. At least, until we can come up with yet another type of lock that she cannot reach or work, and the pressure-sensitive, alarm-sounding floor mat for the hallway arrives and is installed.
The doors are alarmed, and the alarms make it possible for me to catnap during the night, because if she tries to go out, rather than just troll the hallways, the alarm will wake me.
We have security cams operating all the time, so we can easily catch up with her if she actually goes outside. Mostly, she just opens the front door and looks outside, then goes back to her room. Leaving the front door wide open.
Although that lets the heat out for a minute, we just get up, shut the door and that's that. Lately, however, a new concern has arisen.
The Bear. There is a large bear wandering around and we have found tracks just a couple of feet from the front door. He/she has been on the porch. The bear is large enough to reach 8 feet into the air and remove our suet feeders. Large enough to be a threat to a rather frail old lady. Curious enough to come into the house through the left-open door if he/she smells food. Dangerous enough that I don't want to be face-to-face with an annoyed bear at 2 am!
I think my catnaps at night have just ended. At least, until we can come up with yet another type of lock that she cannot reach or work, and the pressure-sensitive, alarm-sounding floor mat for the hallway arrives and is installed.
The Tooth Fairy Doesn't Come Here
I do wish the Tooth Fairy would visit here and give me a hand. Mom keeps losing her teeth...well, maybe losing is not the right word...her teeth keep disappearing and she claims to know nothing about it.
Mind you, she does not brush her teeth. Or wash her hands. Or anything else. The Home Health Aide and I force those actions. Three times a week, the Aide comes and gives Mom a shower, shampoo, and tends to all those grooming needs. The other four days, I do everything but the shower and the shampoo. I do a sponge bath when needed and the hands, face, and oversee the toothbrush exercise. She doesn't care if nothing is cleaned. It is too much effort, and she can't see the usefulness of it.
The dentist says the removable bridge is a perfect fit. She seems not to be aware of it at all. So why do I find it in the trash can, all wrapped in a tissue every so often? She doesn't miss it and is not even aware of it being out of her mouth.
I can't empty the trash without first checking to see if she has her teeth in.
I wonder if there is a tooth-worthy super glue somewhere in Tooth Fairy land...it would sure come in handy!
Mind you, she does not brush her teeth. Or wash her hands. Or anything else. The Home Health Aide and I force those actions. Three times a week, the Aide comes and gives Mom a shower, shampoo, and tends to all those grooming needs. The other four days, I do everything but the shower and the shampoo. I do a sponge bath when needed and the hands, face, and oversee the toothbrush exercise. She doesn't care if nothing is cleaned. It is too much effort, and she can't see the usefulness of it.
The dentist says the removable bridge is a perfect fit. She seems not to be aware of it at all. So why do I find it in the trash can, all wrapped in a tissue every so often? She doesn't miss it and is not even aware of it being out of her mouth.
I can't empty the trash without first checking to see if she has her teeth in.
I wonder if there is a tooth-worthy super glue somewhere in Tooth Fairy land...it would sure come in handy!
Monday, December 31, 2012
The Hat
Imagine my surprise when I walked into the kitchen this morning to find my mother all dressed and sporting a baseball cap. This isn't your normal baseball cap -- it is made of plush rose-colored corduroy and is somewhat "fluffy" so I will call it a hat and not a cap. But it does have a baseball cap styled brim.
When I asked what the occasion was that called for a fancy hat, she looked like I had grown a second head. So...I switched to the straight-forward approach:
Me: Why are you wearing that hat?
Mom: What hat?
Me: The one on your head.
Mom: I'M NOT WEARING A HAT!
(I give her a quizzical look. I cannot imagine how she is unaware of the hat -- the brim is half over her eyes. She puts her hands to her head and discovers the hat. Now, she has a quizzical look.)
Mom: Who put that there?
Me: I think you must have. Did you find it in your closet?
Mom: No. (Then she mumbles something which I will take for "I don't know anything about it." although it sounded more rude than that.)
(The hat has been in her closet for several years. I suppose she has been "rearranging" things again and it surfaced. She puts the hat back on, eats her breakfast and goes off for her morning nap. I wonder if she slept in the hat.)
Now, if only her fashion sense would lend itself to clean clothes.
When I asked what the occasion was that called for a fancy hat, she looked like I had grown a second head. So...I switched to the straight-forward approach:
Me: Why are you wearing that hat?
Mom: What hat?
Me: The one on your head.
Mom: I'M NOT WEARING A HAT!
(I give her a quizzical look. I cannot imagine how she is unaware of the hat -- the brim is half over her eyes. She puts her hands to her head and discovers the hat. Now, she has a quizzical look.)
Mom: Who put that there?
Me: I think you must have. Did you find it in your closet?
Mom: No. (Then she mumbles something which I will take for "I don't know anything about it." although it sounded more rude than that.)
(The hat has been in her closet for several years. I suppose she has been "rearranging" things again and it surfaced. She puts the hat back on, eats her breakfast and goes off for her morning nap. I wonder if she slept in the hat.)
Now, if only her fashion sense would lend itself to clean clothes.
Monday, December 17, 2012
The Laundry Mountain
Laundry has become an unending task. Every day brings more and more. Sisyphus and I have something in common.
I hadn't really ever counted the number of loads in a week until this last week.
28 loads.
My husband and I together had 5 loads: whites, colors, jeans, towels, bedding. One load for kitchen towels, placemats, napkins and such.
The rest was all for Mom. One person, 22 loads.
Unbelievable.
I hadn't really ever counted the number of loads in a week until this last week.
28 loads.
My husband and I together had 5 loads: whites, colors, jeans, towels, bedding. One load for kitchen towels, placemats, napkins and such.
The rest was all for Mom. One person, 22 loads.
Unbelievable.
Sunday, December 16, 2012
Changing Takes Time
Changing clothes is a huge time thief for Mom (and me). She can no longer do this for herself.
I always ask if she wants to change her top or bottom garments first. She always picks one, then immediately starts with the opposite. Okay. I can learn to work with that.
Choosing the right sequence is really hard for her. For example, she will put her pajama bottoms on OVER her pants and shoes. Of course, it doesn't work very well. So, nowadays, I have to step into the confusion and sort it out. She cannot understand that if I ask her to first remove her shoes, I really mean it. Instead, she will begin rearranging the clean things laid out on the bed. She enjoys arranging things; she does not enjoy changing clothes.
So, I have to repeat "Take off your shoes, please." Her hearing seems very selective. I used to ask a dozen times. Now, three times is my limit (and tomorrow it may drop to just one) before I take her by the hand, make her sit down, and remove the shoes myself.
Sometimes, she goes directly to taking off her pants, then struggles when they get snagged on the shoes. Then, getting the shoes and her narrow-bottomed pants unscrambled takes a quite a few minutes and some colorful language on my part, particularly when I get kicked in the face as they finally separate.
At any time during this entire process, she will return to her arranging activities, forgetting all about the real goal.
Getting her out of street clothes and into her pajamas takes at least half an hour. Sometimes much longer. The same for pajamas into street clothes. Add a bath and count on three hours of struggle. When she has an "accident" we get to do it all over again. Sometimes, 4 or 5 times a day.
Time flies when it is standing still.
I always ask if she wants to change her top or bottom garments first. She always picks one, then immediately starts with the opposite. Okay. I can learn to work with that.
Choosing the right sequence is really hard for her. For example, she will put her pajama bottoms on OVER her pants and shoes. Of course, it doesn't work very well. So, nowadays, I have to step into the confusion and sort it out. She cannot understand that if I ask her to first remove her shoes, I really mean it. Instead, she will begin rearranging the clean things laid out on the bed. She enjoys arranging things; she does not enjoy changing clothes.
So, I have to repeat "Take off your shoes, please." Her hearing seems very selective. I used to ask a dozen times. Now, three times is my limit (and tomorrow it may drop to just one) before I take her by the hand, make her sit down, and remove the shoes myself.
Sometimes, she goes directly to taking off her pants, then struggles when they get snagged on the shoes. Then, getting the shoes and her narrow-bottomed pants unscrambled takes a quite a few minutes and some colorful language on my part, particularly when I get kicked in the face as they finally separate.
At any time during this entire process, she will return to her arranging activities, forgetting all about the real goal.
Getting her out of street clothes and into her pajamas takes at least half an hour. Sometimes much longer. The same for pajamas into street clothes. Add a bath and count on three hours of struggle. When she has an "accident" we get to do it all over again. Sometimes, 4 or 5 times a day.
Time flies when it is standing still.
Friday, December 14, 2012
Sundowning: A schedule interrupted
Mom goes to bed early. During the winter months, that is about 4:00 every afternoon. She becomes very agitated and cannot be deterred. It is night and she WILL go to bed. She is too tired to stay up another minute. The fact that she napped after lunch is forgotten.
This afternoon agitation and fixation behavior is called "Sundowning" and is common in Alzheimer's patients.
But going to bed so early has its drawbacks, too. It means I have to wake her up to have dinner. She isn't happy about it. Dinner is an interruption to her sleep.
Sometimes, she will eat at 4:00 and then go off to bed. Mostly, not. She wants lunch at 1 or 1;30, and 4 is just too soon after lunch (and her afternoon snack) for her to be hungry. Plus, if she eats at 4, she gets hungry during the night and then she's full of complaints -- we don't let her have any food!!!!!!!!
Of course, she is up again by 11:00 pm, and wanders around the house from then until around 4 in the morning. After all, she just had many hours of sleep. She isn't tired.
I am. I don't sleep when she is turning lights on and off, talking, opening and closing doors, and generally disrupting everyone.
Here is her current "schedule" for a typical day:
Up at 9, dress
Breakfast around 9:30
Spends time at the "Portal" catching up on news.
Naps for about an hour
Rearranging closet, drawers, general wandering around
Another 1/2 hour nap
Repeat: Rearranging and wandering activities
Lunch around 1;30
Naps for about an hour
Has a snack
More "Portal" time - sometimes used for escape planning with her
imaginary friends
More rearranging stuff OR attempted escape
Getting dark, time for bed by 4:00
Sleep until 6:30
Awakened for dinner
Back to bed until 11:00
Then wandering around, on the Portal, back to rearranging,
trawling the halls, talking/mumbling, opening/closing
doors, and going up and down the stairs until about
4:00 am
Back to bed until 9. Start over.
I think she sleeps about 13 hours, maybe more, every day. There are other little cat-naps along the way. Part way through lunch; at the Portal; whenever the mood strikes. Her neurologist says that curtailing daytime sleeping will not help with the nighttime wandering. Her behavior lets me get about 5 hours of sleep on a good night. Sometimes, much less.
She won't watch TV (can't follow the plot), can no longer really read, doesn't want to talk on the phone, has abandoned the crossword puzzles and word-find puzzles she used to enjoy. She doesn't want to spend much time with live people, she prefers the imaginary world within the "Portal" for all her social interaction.
What she really wants is to have me be available 24/7 to provide anything she wants, including a fresh, hot meal of her choosing at any moment of the night.
I don't think so.
This afternoon agitation and fixation behavior is called "Sundowning" and is common in Alzheimer's patients.
But going to bed so early has its drawbacks, too. It means I have to wake her up to have dinner. She isn't happy about it. Dinner is an interruption to her sleep.
Sometimes, she will eat at 4:00 and then go off to bed. Mostly, not. She wants lunch at 1 or 1;30, and 4 is just too soon after lunch (and her afternoon snack) for her to be hungry. Plus, if she eats at 4, she gets hungry during the night and then she's full of complaints -- we don't let her have any food!!!!!!!!
Of course, she is up again by 11:00 pm, and wanders around the house from then until around 4 in the morning. After all, she just had many hours of sleep. She isn't tired.
I am. I don't sleep when she is turning lights on and off, talking, opening and closing doors, and generally disrupting everyone.
Here is her current "schedule" for a typical day:
Up at 9, dress
Breakfast around 9:30
Spends time at the "Portal" catching up on news.
Naps for about an hour
Rearranging closet, drawers, general wandering around
Another 1/2 hour nap
Repeat: Rearranging and wandering activities
Lunch around 1;30
Naps for about an hour
Has a snack
More "Portal" time - sometimes used for escape planning with her
imaginary friends
More rearranging stuff OR attempted escape
Getting dark, time for bed by 4:00
Sleep until 6:30
Awakened for dinner
Back to bed until 11:00
Then wandering around, on the Portal, back to rearranging,
trawling the halls, talking/mumbling, opening/closing
doors, and going up and down the stairs until about
4:00 am
Back to bed until 9. Start over.
I think she sleeps about 13 hours, maybe more, every day. There are other little cat-naps along the way. Part way through lunch; at the Portal; whenever the mood strikes. Her neurologist says that curtailing daytime sleeping will not help with the nighttime wandering. Her behavior lets me get about 5 hours of sleep on a good night. Sometimes, much less.
She won't watch TV (can't follow the plot), can no longer really read, doesn't want to talk on the phone, has abandoned the crossword puzzles and word-find puzzles she used to enjoy. She doesn't want to spend much time with live people, she prefers the imaginary world within the "Portal" for all her social interaction.
What she really wants is to have me be available 24/7 to provide anything she wants, including a fresh, hot meal of her choosing at any moment of the night.
I don't think so.
Thursday, December 13, 2012
Going Home
Okay, today she ventured out into the sub-freezing weather in just a thin pair of pants, t-shirt, and a cardigan sweater. Her flimsy loafers, as usual. This time, no tote bag.
She came to the studio and announced that she was "going home."
Sigh. Again.
She did have a pocket full of snickers bars (she robbed my husband's stash) and a handful of lifesavers. And she actually had her glasses on, which she generally forgets. I suppose from her point of view, she was very well prepared.
After an hour in the studio, she decided a nap sounded good, so she went back in the house to her favorite napping spot -- her rocker-glider.
Of course, all this napping makes it possible for her to wander around the house all night, doesn't it? From about 11 till 4, she is up every 10 minutes.
My husband, a sound sleeper, never hears a thing. I hear it all. Lucky me.
She came to the studio and announced that she was "going home."
Sigh. Again.
She did have a pocket full of snickers bars (she robbed my husband's stash) and a handful of lifesavers. And she actually had her glasses on, which she generally forgets. I suppose from her point of view, she was very well prepared.
After an hour in the studio, she decided a nap sounded good, so she went back in the house to her favorite napping spot -- her rocker-glider.
Of course, all this napping makes it possible for her to wander around the house all night, doesn't it? From about 11 till 4, she is up every 10 minutes.
My husband, a sound sleeper, never hears a thing. I hear it all. Lucky me.
Tuesday, December 11, 2012
Names are such fleeting things
Names. We all have them. Before a child is ever born, parents agonize over "what to name the baby" and everyone has an opinion. From our first memories, we know our own names. It is a part of us that no one takes away. Yes, we accumulate nicknames and shortened versions of our name over the course of a lifetime. My father, for example, was born "Henry," spent his young years referred to as "H" or "H C" and eventually became "Hank" to just about everyone.
Alzheimer's messes with that. It steals names.
Mom needed to sign some papers the other day. She hasn't signed anything for a couple of months. She took pen in hand, and asked what she was supposed to do. The visitor said she needed to sign her name at the "X." Mom looked a bit bewildered, and looked to me for clarification. I said she should just sign her name, just like she has done thousands of times in her nearly 85 years of life. So she started to sign, writing very slowly and in very tiny letters. When she was done, the visitor asked if she could sign a second paper. She nodded that she would.
I glanced at the first sheet and asked to see it more closely. She had signed it "Anne Tracey **********" with an unreadable last name. Now, that would be fine, except that her name is NOT Anne or Tracey or even the unreadable-but-clearly-not-her-last-name as signed. Her name is Lois.
When I said that it was not her signature, the visitor stopped her from completing the second page signature. What she had started there was "Claire." I had to sign the first page, the second, and several more. We teased her about using various aliases and she laughed with us. But it was clear something was really wrong.
Later, I asked her about the names she had signed. She hemmed and hawed a bit, finally just shrugging. I asked her if she could remember her name -- and sadly, she could not. Nor could she remember my name, but she did know that I am her daughter. A photo of my Father revealed that she had forgotten his name, too. I should have realized it was a bad day for her when the visitor asked how many children she had and she promptly answered "3." the visitor looked at me for confirmation and I said "1." But we've had the counting error before and it doesn't alarm me.
Mom doesn't seem upset about forgetting her own name. She says no one uses it anyway. I suppose she is right in a sense, as my husband and I call her Mom. Others call her Lois, but she isn't sure who they are, most of the time, and the name must not sink in. She seems happy enough to go around without a name. Maybe they really are just fleeting.
In the meantime, I am Vickie. I will remember. Always. I think.
Alzheimer's messes with that. It steals names.
Mom needed to sign some papers the other day. She hasn't signed anything for a couple of months. She took pen in hand, and asked what she was supposed to do. The visitor said she needed to sign her name at the "X." Mom looked a bit bewildered, and looked to me for clarification. I said she should just sign her name, just like she has done thousands of times in her nearly 85 years of life. So she started to sign, writing very slowly and in very tiny letters. When she was done, the visitor asked if she could sign a second paper. She nodded that she would.
I glanced at the first sheet and asked to see it more closely. She had signed it "Anne Tracey **********" with an unreadable last name. Now, that would be fine, except that her name is NOT Anne or Tracey or even the unreadable-but-clearly-not-her-last-name as signed. Her name is Lois.
When I said that it was not her signature, the visitor stopped her from completing the second page signature. What she had started there was "Claire." I had to sign the first page, the second, and several more. We teased her about using various aliases and she laughed with us. But it was clear something was really wrong.
Later, I asked her about the names she had signed. She hemmed and hawed a bit, finally just shrugging. I asked her if she could remember her name -- and sadly, she could not. Nor could she remember my name, but she did know that I am her daughter. A photo of my Father revealed that she had forgotten his name, too. I should have realized it was a bad day for her when the visitor asked how many children she had and she promptly answered "3." the visitor looked at me for confirmation and I said "1." But we've had the counting error before and it doesn't alarm me.
Mom doesn't seem upset about forgetting her own name. She says no one uses it anyway. I suppose she is right in a sense, as my husband and I call her Mom. Others call her Lois, but she isn't sure who they are, most of the time, and the name must not sink in. She seems happy enough to go around without a name. Maybe they really are just fleeting.
In the meantime, I am Vickie. I will remember. Always. I think.
Thursday, November 15, 2012
Just a Five Minute Walk
Today, Mom tried again to make an escape. The door alarm was my first clue. Sometimes she just wants to get a little air, so I watched her for a moment or two on the driveway cam to see what she was doing.
First, she tried to open the garage door. It was locked. So she set off walking. I went out and intercepted her.
Me: What's up?
Mom: I'm going home.
(This is a common goal for Alzheimer's patients. It is not so much a place, but to a time in the past when they were happy and felt secure. It can be childhood, but we have discovered that home for her is about 1978, when my Dad was still alive and in good health.)
Me: Are you walking? You have forgotten to wear a coat.
Mom: It isn't that far. I'll be fine.
Me: It is over 2000 miles, it is winter, you have no wallet, no money, no credit card, no coat, a pair of flimsy loafers that will be useless in 20 miles. You seem to have a tote bag with you, though, and a couple of pairs of pants under your elbow. What is in the tote?
Mom: (Peeking into tote. I look, too.) My slippers and some food.
Me: Well, when your shoes give out, your slippers will probably last another 5 miles. Then you will have to walk barefooted. What do you plan to eat? There is only a lolipop in your tote bag, that won't last long. To walk 2000 miles will take you several months. One lolipop will be gone in an hour. And where will you sleep?
Mom: I don't know. I'm going, now.
Me: Do you have a map? Can you tell me which direction would point to Florida?
Mom points in all directions and begins to laugh.
Me: Why don't we go inside and have lunch. Then we can think this through a little better.
(Mom agrees and we go indoors.)
We have lunch. A few snowflakes fall. I mention that she would have been getting a little cold in the snow. She laughs and goes to her room for a nap.
Another escape thwarted. I'm just the jailer.
First, she tried to open the garage door. It was locked. So she set off walking. I went out and intercepted her.
Me: What's up?
Mom: I'm going home.
(This is a common goal for Alzheimer's patients. It is not so much a place, but to a time in the past when they were happy and felt secure. It can be childhood, but we have discovered that home for her is about 1978, when my Dad was still alive and in good health.)
Me: Are you walking? You have forgotten to wear a coat.
Mom: It isn't that far. I'll be fine.
Me: It is over 2000 miles, it is winter, you have no wallet, no money, no credit card, no coat, a pair of flimsy loafers that will be useless in 20 miles. You seem to have a tote bag with you, though, and a couple of pairs of pants under your elbow. What is in the tote?
Mom: (Peeking into tote. I look, too.) My slippers and some food.
Me: Well, when your shoes give out, your slippers will probably last another 5 miles. Then you will have to walk barefooted. What do you plan to eat? There is only a lolipop in your tote bag, that won't last long. To walk 2000 miles will take you several months. One lolipop will be gone in an hour. And where will you sleep?
Mom: I don't know. I'm going, now.
Me: Do you have a map? Can you tell me which direction would point to Florida?
Mom points in all directions and begins to laugh.
Me: Why don't we go inside and have lunch. Then we can think this through a little better.
(Mom agrees and we go indoors.)
We have lunch. A few snowflakes fall. I mention that she would have been getting a little cold in the snow. She laughs and goes to her room for a nap.
Another escape thwarted. I'm just the jailer.
Friday, June 8, 2012
I've died, and I didn't know it
Mom was upset today. She came out to the studio and cried for a time. This is not all that odd. She goes through mood swings as part of the Alzheimer's Disease, and sad times usually only last a couple of minutes.
After a bit, she started to get back to herself and I asked what was bothering her.
"My daughter died."
Now, I feel pretty lively for a dead person. This statement came as a great surprise. Since I'm an only child, it was also a little confusing.
So we talked about it. She finally said that it wasn't me that died, but her "other" daughter. Ahhhhh. In her mind, I have always been confusing. I've never been the daughter she pictures in her fantasy.
She has an idealized daughter, one that is always sweet and agreeable, and ready to wait on Mom hand and foot. THAT one died. That leaves only me, the one she has begun to think of as her jailer. I make her do things she doesn't want to do...baths, eat real food, not just candy, brush her teeth, wash her hands, change clothes and sheets and lots of unpleasant, unnecessary stuff. I won't let her go off with the mystery ride in the white truck. The jailer.
So, now that goody-two-shoes is gone, she is left with me. No wonder she was crying.
After a bit, she started to get back to herself and I asked what was bothering her.
"My daughter died."
Now, I feel pretty lively for a dead person. This statement came as a great surprise. Since I'm an only child, it was also a little confusing.
So we talked about it. She finally said that it wasn't me that died, but her "other" daughter. Ahhhhh. In her mind, I have always been confusing. I've never been the daughter she pictures in her fantasy.
She has an idealized daughter, one that is always sweet and agreeable, and ready to wait on Mom hand and foot. THAT one died. That leaves only me, the one she has begun to think of as her jailer. I make her do things she doesn't want to do...baths, eat real food, not just candy, brush her teeth, wash her hands, change clothes and sheets and lots of unpleasant, unnecessary stuff. I won't let her go off with the mystery ride in the white truck. The jailer.
So, now that goody-two-shoes is gone, she is left with me. No wonder she was crying.
Wednesday, May 23, 2012
The Return of the Suitcase
The suitcase is back. She has it right by the door to her bedroom. The overnight bag is right next to it. She is ready.
Last week, "Kelly" was coming to pick her up. By all calculations, Kelly is over 120 years old. He was a friend of her mother. She talks to him all the time over the portal. She finally confessed that she has never met him face-to-face. Yet, somehow, she feels that she can just go off to some unknown place, for some unknown length of time, with this specter. I was able to convince her that it wouldn't be such a great idea.
I suppose the packed suitcase tells me that she may be rethinking that decision. I am using the term "thinking" rather loosely. I don't really know how much actual "thinking" she is capable of nowadays. To actually "think" that a 120+ year old man would drive all the way from Florida to Massachusetts in only a few minutes time (if at all!!!!!!!) shows the level of her ability.
Sad.
Last week, "Kelly" was coming to pick her up. By all calculations, Kelly is over 120 years old. He was a friend of her mother. She talks to him all the time over the portal. She finally confessed that she has never met him face-to-face. Yet, somehow, she feels that she can just go off to some unknown place, for some unknown length of time, with this specter. I was able to convince her that it wouldn't be such a great idea.
I suppose the packed suitcase tells me that she may be rethinking that decision. I am using the term "thinking" rather loosely. I don't really know how much actual "thinking" she is capable of nowadays. To actually "think" that a 120+ year old man would drive all the way from Florida to Massachusetts in only a few minutes time (if at all!!!!!!!) shows the level of her ability.
Sad.
Wednesday, April 25, 2012
It is Soooooo Quiet
No bowls of milk. No waiting for a ride. No pacing. No fussing.
She is happy today....and THAT makes me happy.
She is happy today....and THAT makes me happy.
Monday, April 23, 2012
The Bowl of Milk
It happened again today. I went downstairs to the dining room and found Mom's place setting all arranged on the table: placemat, knife, fork, spoon, napkin, glass, bread plate, soupbowl. Nothing really odd about that, except that she was nowhere to be seen, and the soupbowl was totally FULL of milk. Milk. Right to the brim.
This happened twice last week, but the bowl was a small, dessert-type bowl. Both times, I just dumped the bowl and went about my day. Today, I thought I might approach the mystery.
Since I was busy fixing lunch for the two of us, I left the bowl in place. When she came down, I pointed it out and asked if she knew anything about it. She didn't. So I tried a different approach and asked if she had been wanting a bowl of cereal at midmorning. She didn't.
I suppose the muffin elf, who is still very busy here in the house, is thirsty but doesn't use a glass.
I think I am missing the message. Where is Hercule Poirot when you need him?
This happened twice last week, but the bowl was a small, dessert-type bowl. Both times, I just dumped the bowl and went about my day. Today, I thought I might approach the mystery.
Since I was busy fixing lunch for the two of us, I left the bowl in place. When she came down, I pointed it out and asked if she knew anything about it. She didn't. So I tried a different approach and asked if she had been wanting a bowl of cereal at midmorning. She didn't.
I suppose the muffin elf, who is still very busy here in the house, is thirsty but doesn't use a glass.
I think I am missing the message. Where is Hercule Poirot when you need him?
Friday, April 13, 2012
A Bath????????????? !!!!!!!!!!!!!!!!!!!!
What is it about little kids and little old ladies with AD? Is it *really* so awful to get clean?
Thursday, April 12, 2012
The Muffin Elf
Okay, I am catching up today, so two posts.
A confession: My mother is a Muffin Elf. She loves muffins. Cranberry-orange ones. She eats them...lots of them. Every day. About 4 of them, actually. In secret, most of the time, although we know she is doing it (we buy the muffins, after all). They just disappear from the box and she has no idea where they have gone. Ever. Sometimes, she shares with the wonderful woman who does respite care for us. Mostly, not.
Her other favorite food: Nutri-Grain bars. Several per day. A whole box, if she could.
Mind you, she is VERY thin. You would think that she would gain a lot, but she never does.
She still eats her dinner. For a while, she just pushed it around on her plate, but lately she is actually cleaning her plate.
We've noticed that she is is pretty indifferent to most foods, but loves things that are sweet. So, add a tiny touch of honey to her carrots and she eats them up; a dab of apricot jam on her ham sandwich and she will finish it, instead of eating two bites. Although the constant sweetening doesn't appeal to my husband or to me, she finds it irresistible and it helps her to get a better variety of foods down. She still hates vegetables, can't stand fruit (unless it is in jam) and is, at best, indifferent to most everything else. She only picks at meats, pasta is ignored. "I'm not hungry," she'll say, immediately followed with "Is there anything for dessert?"
Her doctor says it is probable that she can only taste sweet foods. And, if she eats at least something nutritious every day, that the muffins and bars are okay.
She admits only to eating a single muffin every day. But the muffins disappear. The bars disappear.
There must be an Elf.
A confession: My mother is a Muffin Elf. She loves muffins. Cranberry-orange ones. She eats them...lots of them. Every day. About 4 of them, actually. In secret, most of the time, although we know she is doing it (we buy the muffins, after all). They just disappear from the box and she has no idea where they have gone. Ever. Sometimes, she shares with the wonderful woman who does respite care for us. Mostly, not.
Her other favorite food: Nutri-Grain bars. Several per day. A whole box, if she could.
Mind you, she is VERY thin. You would think that she would gain a lot, but she never does.
She still eats her dinner. For a while, she just pushed it around on her plate, but lately she is actually cleaning her plate.
We've noticed that she is is pretty indifferent to most foods, but loves things that are sweet. So, add a tiny touch of honey to her carrots and she eats them up; a dab of apricot jam on her ham sandwich and she will finish it, instead of eating two bites. Although the constant sweetening doesn't appeal to my husband or to me, she finds it irresistible and it helps her to get a better variety of foods down. She still hates vegetables, can't stand fruit (unless it is in jam) and is, at best, indifferent to most everything else. She only picks at meats, pasta is ignored. "I'm not hungry," she'll say, immediately followed with "Is there anything for dessert?"
Her doctor says it is probable that she can only taste sweet foods. And, if she eats at least something nutritious every day, that the muffins and bars are okay.
She admits only to eating a single muffin every day. But the muffins disappear. The bars disappear.
There must be an Elf.
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