Posts
This is the sixth in a series of six posts based on information from the Global Deterioration Scale adaptation by Dr. Doug Drummond from Reisberg, Barry et al. This scale is for the assessment of primary degenerative dementia and Dr. Drummond includes the "Usual Care Setting" for people in this phase, which is very helpful from a pragmatic point of view.
The information from the GDS will be italicized for clarity of origin.
Stage 7 Severe dementia
Verbal abilities will be lost over the course of this stage
Incontinent
Needs assistance with feeding
Loses ability to walk
\Usual Care Setting: Complex Care
Though we have been dealing with dementia for about ten years now, we have not reached this stage completely yet. I have to admit that I pray we never do.
Our mother requires assistance walking, but occasionally still "takes off" on her own, which is of course dangerous in terms of falling and resulted in a broken hip about two years ago.
At times, she is able to feed herself, but of late she has required assistance in feeding. She would simply not eat if no one helped her. During the approximate two years she has been in assisted living, she has had periods where she totally fed herself with prompting and other times where she had to have total help. Some of that has seemed to depend upon other physical issues and how her general health was at the time.
Incontinence becomes common for most at this stage.
Her verbal abilities continue to be intact, but on a recent visit, she talked nonstop for the entire day, much of it undecipherable. The staff said that occasionlly happened. Other days, she is quiet, but will always respond to us when spoken to. Sometimes she will surprise us with an insight about someone when we didn't realize she was observing at all.
Two incidents come to mind. One of my brother-in-laws was visiting along with my younger sister, and they had taken Mother outside to enjoy the nice weather. Rick said, "I wonder if there's a grill around here."
Mother then responded, "Well, I don't think I've seen a gorilla around here."
Rick teased her,, saying, "Don't you really think if you'd seen a gorilla around here you'd remember that?" and explained what he had said.
She laughed, and agreed that she would have remembered that for sure.
Another day, a different brother-in-law took a wet wipe that had been used for some cleanup between his thumb and forefinger, barely touching it, before tossing it in the trash, and Mother remarked that she didn't know he was so "dainty", which brought a laugh.
There have been other light moments where she made the staff laugh by some observation she made about something they did or said.
Dementia Hint: Music is said to reach a part of the brain that speech cannot. When speech fails, music may provide a bridge, so sing with the person, or if you are not musically inclined, make sure that they are exposed to music through headphones or other means.
Dementia Hint: There are personal alarm devices that can be used to try to avoid persons getting up on their own since a fall can end up being lethal. These can be attached to chair, wheelchair, and bed.
Installed
Sunday, February 21, 2010
Tuesday, February 9, 2010
VASCULAR DEMENTIA IN THE ELDERLY: GLOBAL DETERIORATION SCALE/PART 5/STAGE 6
This is the fifth in a series of six posts based on information from the Global Deterioration Scale adaptation by Dr. Doug Drummond from Reisberg, Barry et al. This scale is for the assessment of primary degenerative dementia and Dr. Drummond includes the "Usual Care Setting" for people in this phase, which is very helpful from a pragmatic point of view.
The information from the GDS will be italicized for clarity of origin.
Stage 6 Moderately Severe Dementia
May occasionally forget name of spouse
Largely unaware of recent experiences and events in their lives
Will require assistance with basic ADLs.
May be incontinent of urine.
Behavioural and psychological symptoms of dementia (BPSD) are common e.g. delusions, repetitive behaviours, agitation
Usual Care Setting: Most often in Complex Care facility.
Several things had happened while our mother was still in her home that began to point to more serious dementia symptoms, but hard as it may be to believe, we were still able to convince ourselves, or let her convince us, that these new confusions were reality. In fact, so determined was I to believe what she was telling me about seeing elephants at her neighbor's house at night, that I walked the 100 or so yards to the back dividing fence with her to see what might be over there.
The neighbors had Great Pyrenees dogs which have a very deep distinctive bark, so I decided that yes, she could be hearing the dogs, seeing lights there at night (they had spotlights shining into the woods) and maybe she had thought the shadows were elephants because of how the dogs sounded. By now, you are probably laughing. Now, I agree.
But you do not know how convincing our mother could be, even with advanced dementia symptoms. In May, just after she turned 87, she had cataract surgery. The nurses came in, asked her which eye was to be repaired, and she told them the wrong eye. When I corrected the information, they looked at me, looked at her, and said they would look at the chart. I certainly thought that was a good idea.
Mother never backed off, insisting on the wrong eye, authoritatively. Fortunately, they checked the chart. After that surgery, everyone pitched in. My brother went and put drops in her eye several times a day, and everyone made extra trips down to see about her.
But that marked a signal change. I hated to leave her several days post surgery, and it was patently clear that she could not stay there without more care and probably fulltime care. We all decided that we must act soon and decide on a plan.
No one wanted to go up against her will, not because she would really fight with us or even get mad, but it was just difficult because she continued to cling to her independence and we had not made the transition to being the "parents".
We made a one month plan, and as I've detailed in an earlier post, "Thank God for watermelon angels", we were lucky. On the day before my sisters went down to get her to take her to the doctor for evaluation, she made a last stand of independence that, but for the grace of God ,could have been her last stand.
She became less able leading up to this phase to remember names. And her memory as far as events was suspect and unreliable, though she told things with great authority. We realized at this juncture that she had to have pretty intense observation, so we made the decision for her to come and live in my home for a while, at least, until we figured out what to do.
Once she was here, we determined that we would not be comfortable leaving her alone for even an hour once she arrived. We arranged for caregivers. I'll do one more post on the last stage of the GDS and then I will move to a more detailed account of the approximately 1 1/2 years she was in my home and in Stage 6.
DEMENTIA HINT: You will have to become as a parent to your parent. This is more difficult for some people than others. When the shift changes, the more quickly you acclimate the better, for there will be all sorts of decisions to make, and if you wait for your parent to make them, it will just never happen.
Installed
The information from the GDS will be italicized for clarity of origin.
Stage 6 Moderately Severe Dementia
May occasionally forget name of spouse
Largely unaware of recent experiences and events in their lives
Will require assistance with basic ADLs.
May be incontinent of urine.
Behavioural and psychological symptoms of dementia (BPSD) are common e.g. delusions, repetitive behaviours, agitation
Usual Care Setting: Most often in Complex Care facility.
Several things had happened while our mother was still in her home that began to point to more serious dementia symptoms, but hard as it may be to believe, we were still able to convince ourselves, or let her convince us, that these new confusions were reality. In fact, so determined was I to believe what she was telling me about seeing elephants at her neighbor's house at night, that I walked the 100 or so yards to the back dividing fence with her to see what might be over there.
The neighbors had Great Pyrenees dogs which have a very deep distinctive bark, so I decided that yes, she could be hearing the dogs, seeing lights there at night (they had spotlights shining into the woods) and maybe she had thought the shadows were elephants because of how the dogs sounded. By now, you are probably laughing. Now, I agree.
But you do not know how convincing our mother could be, even with advanced dementia symptoms. In May, just after she turned 87, she had cataract surgery. The nurses came in, asked her which eye was to be repaired, and she told them the wrong eye. When I corrected the information, they looked at me, looked at her, and said they would look at the chart. I certainly thought that was a good idea.
Mother never backed off, insisting on the wrong eye, authoritatively. Fortunately, they checked the chart. After that surgery, everyone pitched in. My brother went and put drops in her eye several times a day, and everyone made extra trips down to see about her.
But that marked a signal change. I hated to leave her several days post surgery, and it was patently clear that she could not stay there without more care and probably fulltime care. We all decided that we must act soon and decide on a plan.
No one wanted to go up against her will, not because she would really fight with us or even get mad, but it was just difficult because she continued to cling to her independence and we had not made the transition to being the "parents".
We made a one month plan, and as I've detailed in an earlier post, "Thank God for watermelon angels", we were lucky. On the day before my sisters went down to get her to take her to the doctor for evaluation, she made a last stand of independence that, but for the grace of God ,could have been her last stand.
She became less able leading up to this phase to remember names. And her memory as far as events was suspect and unreliable, though she told things with great authority. We realized at this juncture that she had to have pretty intense observation, so we made the decision for her to come and live in my home for a while, at least, until we figured out what to do.
Once she was here, we determined that we would not be comfortable leaving her alone for even an hour once she arrived. We arranged for caregivers. I'll do one more post on the last stage of the GDS and then I will move to a more detailed account of the approximately 1 1/2 years she was in my home and in Stage 6.
DEMENTIA HINT: You will have to become as a parent to your parent. This is more difficult for some people than others. When the shift changes, the more quickly you acclimate the better, for there will be all sorts of decisions to make, and if you wait for your parent to make them, it will just never happen.
Installed
Wednesday, February 3, 2010
VASCULAR DEMENTIA IN THE ELDERLY: GLOBAL DETERIORATION SCALE/PART 4/STAGE 5
This is the fourth in a series of six posts based on information from the Global Deterioration Scale adaptation by Dr. Doug Drummond from Reisberg, Barry et al. This scale is for the assessment of primary degenerative dementia and Dr. Drummond includes the "Usual Care Setting" for people in this phase, which is very helpful from a pragmatic point of view. The information from the GDS will be italicized.
Stage 5 Moderate Dementia
Can no longer survive without some assistance
Unable to recall major relevant aspects of their current lives, e.g. an address or telephone number of many years, names of grandchildren, etc.
Some disorientation to date, day of week, season, or to place.
They require no assistance with toileting, eating, or dressing, but may need help choosing appropriate clothing.
USUAL CARE SETTING- At home with live-in family member. In seniors' residence with home support. Possibly in facility care, especially if behavioral problems or comorbid physical disabilities.
This was the stage, though we did not know she was in it per se, when things got really "dicey".
She was on almost no medicine, or it would have gotten more complicated, and we likely would have had to have more care, sooner.
Our biggest problem continued to be food, or her lack of intake, which had to be addressed. She began to be unable to operate the microwave, the can opener and we began to have concerns about the gas burners on the stove although she was still capable of this.
During this phase, we had our only gentle confrontation in which the three sisters and her met together and came to a meeting of three of the four minds. Hers did not meet at all, but a plan was introduced regarding a caregiver, and one was hired to go three days per week, more if needed. This plan worked for about a year, and the social interaction was good for her. She would say "I know you're trying to help me, but I don't need anyone."
There were aspects of her "self" that were largely intact, including her judgment. The problem continued to be her memory. It was not that she would do something foolish, rather that she might forget she had done something. Again, we balanced her need to be independent with her safety.
And I do want to add here that I learned when she was in my home for a while that the elderly can fall, suddenly, with the caregiver present, and without your having any way of predicting or preventing it. I became less critical after having her with me 24 hours a day, realizing that like a child, they can get hurt in spite of your best efforts.
I would suggest people should err on the side of caution, but the pros and cons must be weighed.
Here are just a few considerations: 1. A person who has been in her/his own home may be more susceptible to contagious disease initially upon being placed in an institutional setting, so it isn't that everything is always better. It's a tradeoff.
2. Many families walk this fine line with an elderly parent and may delay putting them into the higher level of oversight for more time than someone else thinks they should
3. The bottom line is the person's psychological wellbeing and their safety
Our mother still maintained a strong rationality about her even though her thoughts and memories were draining from her like honey dripping from the comb. So it was during this phase or maybe a year prior that I felt like I started exerting my will on her.
She liked to "burn brush" outside, and we had cut a lot of undergrowth from the yard one weekend and had to leave it stacked out by the pond (tank to all you Texans), so I knew she'd want to burn it. I called and left a message on her recorder "DO NOT BURN" and repeated it a number of times. Then I called several times during the week to reinforce the message.
I think my siblings heard the message and may have thought I was being rude, but I needed to make the idea stick. And it did. She never burned that pile of brush until someone offered to help her later.
She had begun to forget names of some of the extended relatives, but mostly knew her children, their spouses and others that she saw regularly.
She used a calendar since about Stage 2 and kept it beside her telephone. She noted when someone called or visited, and other important events. During Stage 5, at some point, she stopped keeping the calendar.
Still, as noted in the information set out by Drummond, she could still take care of all her personal needs with the exception of preparing her food. And she could hop in and out of the bathtub like a teenager. Her agility was amazing for her age.
As she progressed further into this stage, we increased the caregiving to five days per week, and then her adult children checked on her on the weekend.
My next post will deal more with all the changes that took place during this phase.
DEMENTIA HINT: During this phase is a good time for the caregivers to start keeping notes and informing the family about things that are changing because at the end of this phase, the family will likely be looking at how to provide 24 hour care, if they have not already. If you are a spouse or child caring for a parent without outside caregivers, the notes will still help you assess changes, although you may not have time to do them.
Installed
Stage 5 Moderate Dementia
Can no longer survive without some assistance
Unable to recall major relevant aspects of their current lives, e.g. an address or telephone number of many years, names of grandchildren, etc.
Some disorientation to date, day of week, season, or to place.
They require no assistance with toileting, eating, or dressing, but may need help choosing appropriate clothing.
USUAL CARE SETTING- At home with live-in family member. In seniors' residence with home support. Possibly in facility care, especially if behavioral problems or comorbid physical disabilities.
This was the stage, though we did not know she was in it per se, when things got really "dicey".
She was on almost no medicine, or it would have gotten more complicated, and we likely would have had to have more care, sooner.
Our biggest problem continued to be food, or her lack of intake, which had to be addressed. She began to be unable to operate the microwave, the can opener and we began to have concerns about the gas burners on the stove although she was still capable of this.
During this phase, we had our only gentle confrontation in which the three sisters and her met together and came to a meeting of three of the four minds. Hers did not meet at all, but a plan was introduced regarding a caregiver, and one was hired to go three days per week, more if needed. This plan worked for about a year, and the social interaction was good for her. She would say "I know you're trying to help me, but I don't need anyone."
There were aspects of her "self" that were largely intact, including her judgment. The problem continued to be her memory. It was not that she would do something foolish, rather that she might forget she had done something. Again, we balanced her need to be independent with her safety.
And I do want to add here that I learned when she was in my home for a while that the elderly can fall, suddenly, with the caregiver present, and without your having any way of predicting or preventing it. I became less critical after having her with me 24 hours a day, realizing that like a child, they can get hurt in spite of your best efforts.
I would suggest people should err on the side of caution, but the pros and cons must be weighed.
Here are just a few considerations: 1. A person who has been in her/his own home may be more susceptible to contagious disease initially upon being placed in an institutional setting, so it isn't that everything is always better. It's a tradeoff.
2. Many families walk this fine line with an elderly parent and may delay putting them into the higher level of oversight for more time than someone else thinks they should
3. The bottom line is the person's psychological wellbeing and their safety
Our mother still maintained a strong rationality about her even though her thoughts and memories were draining from her like honey dripping from the comb. So it was during this phase or maybe a year prior that I felt like I started exerting my will on her.
She liked to "burn brush" outside, and we had cut a lot of undergrowth from the yard one weekend and had to leave it stacked out by the pond (tank to all you Texans), so I knew she'd want to burn it. I called and left a message on her recorder "DO NOT BURN" and repeated it a number of times. Then I called several times during the week to reinforce the message.
I think my siblings heard the message and may have thought I was being rude, but I needed to make the idea stick. And it did. She never burned that pile of brush until someone offered to help her later.
She had begun to forget names of some of the extended relatives, but mostly knew her children, their spouses and others that she saw regularly.
She used a calendar since about Stage 2 and kept it beside her telephone. She noted when someone called or visited, and other important events. During Stage 5, at some point, she stopped keeping the calendar.
Still, as noted in the information set out by Drummond, she could still take care of all her personal needs with the exception of preparing her food. And she could hop in and out of the bathtub like a teenager. Her agility was amazing for her age.
As she progressed further into this stage, we increased the caregiving to five days per week, and then her adult children checked on her on the weekend.
My next post will deal more with all the changes that took place during this phase.
DEMENTIA HINT: During this phase is a good time for the caregivers to start keeping notes and informing the family about things that are changing because at the end of this phase, the family will likely be looking at how to provide 24 hour care, if they have not already. If you are a spouse or child caring for a parent without outside caregivers, the notes will still help you assess changes, although you may not have time to do them.
Installed
Monday, February 1, 2010
VASCULAR DEMENTIA IN THE ELDERLY: LIB'S LAW PRECEDED KATIE'S LAW
This is just a short post about how our mother stopped driving. It is one of the lighter things that happened and about which we can always laugh. I know most families will face this if they have an elderly parent, and in social work in the past, I have dealt with many families who had to prevent their parents from driving when it became hazardous.
My mother has always been independent and stubborn in matters related to what she will and will not do in regard to healthcare, staying in her home, doing what she wants in the pasture, around the cows, etc.
In other matters, she wasn't stubborn, always being so easy to please in regard to where she wanted to go, what she wanted to do. Very easy to be with and always cooperative, not having to have her way.
But her independent spirit was strong, her will strong and when one has been the child, it is hard to become the parent, as we, and many of you, have found out.
So of course we dreaded having to stop her from driving. But she self-monitored on many issues. And driving happened to be one of them. As noted before, we noticed that her car would be dead on almost every visit, and these were weekly, so we knew she wasn't driving very much. One day she announced that she didn't drive her car very much, so she wanted to sell it. We thought it was a good idea and one less thing to worry about, so the car was sold.
She had several friends older than she was, and both of them still drove. She was 86 at this time, I believe. They would occasionally come to visit her and sit on the front porch, sipping iced tea and discussing how the world had changed. Mother somehow focused a lot of effort during these visits and was able to stay in these conversations.
The bigger problem got to be that she could convince others of things that were not true, so earnest and forceful was she in her speech.
"My kids made me sell my car," she told a longtime friend, age 88, one day in our hearing. "You know you can't drive in Texas after you're 83. You're going to have to stop driving. If they catch you, you'll get a ticket."
He seemed confounded by the information, but she insisted that it was true. She continued in this vein , but changed the age because she couldn't remember what exactly her "law" stated. We called it Lib's Law, so it was pretty poignant when a real Katie's Law was passed to govern the elderly continuing to drive. She may have had dementia, but that didn't keep her from being prescient.
Installed
My mother has always been independent and stubborn in matters related to what she will and will not do in regard to healthcare, staying in her home, doing what she wants in the pasture, around the cows, etc.
In other matters, she wasn't stubborn, always being so easy to please in regard to where she wanted to go, what she wanted to do. Very easy to be with and always cooperative, not having to have her way.
But her independent spirit was strong, her will strong and when one has been the child, it is hard to become the parent, as we, and many of you, have found out.
So of course we dreaded having to stop her from driving. But she self-monitored on many issues. And driving happened to be one of them. As noted before, we noticed that her car would be dead on almost every visit, and these were weekly, so we knew she wasn't driving very much. One day she announced that she didn't drive her car very much, so she wanted to sell it. We thought it was a good idea and one less thing to worry about, so the car was sold.
She had several friends older than she was, and both of them still drove. She was 86 at this time, I believe. They would occasionally come to visit her and sit on the front porch, sipping iced tea and discussing how the world had changed. Mother somehow focused a lot of effort during these visits and was able to stay in these conversations.
The bigger problem got to be that she could convince others of things that were not true, so earnest and forceful was she in her speech.
"My kids made me sell my car," she told a longtime friend, age 88, one day in our hearing. "You know you can't drive in Texas after you're 83. You're going to have to stop driving. If they catch you, you'll get a ticket."
He seemed confounded by the information, but she insisted that it was true. She continued in this vein , but changed the age because she couldn't remember what exactly her "law" stated. We called it Lib's Law, so it was pretty poignant when a real Katie's Law was passed to govern the elderly continuing to drive. She may have had dementia, but that didn't keep her from being prescient.
Installed
VASCULAR DEMENTIA IN THE ELDERLY: 7 STAGES OF THE GLOBAL DETERIORATION SCALE/PART 3/STAGE 4
This is the third in a series of six posts based on information from the Global Deterioration Scale adaptation by Dr. Doug Drummond from Reisberg, Barry et al. This scale is for the assessment of primary degenerative dementia and Dr. Drummond includes the "Usual Care Setting" for people in this phase, which is very helpful from a pragmatic point of view. The information from the GDS will be italicized.
Stage 4 Early dementia
Clear-cut deficits on careful clinical interview
Difficulty performing complex tasks e.g. handling finances, traveling
Denial is common. Withdrawal from challenging situations
Usual care setting-might live independently-perhaps with assistance from family or caregivers
At this time our mother turned her financial affairs over to my sister who began paying bills, doing her taxes, and tending to other financial matters.
I mentioned that she had stopped teaching her Sunday School class, which she had done for many years. toward the end of Stage 3. In retrospect, I believe she knew she was unable to concentrate to study or that some other aspect of her cognitive skills were weakening and she knew it before we did. As noted in the GDS, it appears that she withdrew from this challenging situation.
I believe during this stage she stopped going to church regularly. Friends offered to pick her up, but she always made an excuse. This we could never figure out either, except that maybe she would forget when it was Sunday, forget to set the alarm, etc. She did not want to bother anyone, so it was easier to stay home than try to remember. This increased her social isolation because she lived out in the country and church activities had been her main social activity.
To add to the severity of this change, she also apparently cut way back on driving and eventually stopped herself from driving, but "blamed" it on her adult children. I'll do a post on that specific thing later. It is actually one of the things that we still laugh about. Her strong will still very intact, she would not accept that she really couldn't drive, but rather that we "meanies" made her quit.
So at the beginning of this phase, she was still driving, still living independently with assistance and oversight from all four of her children, but it was getting harder for the adult children to forsee the needs and make sure all of her needs were met. We knew that soon we would have to have more "boots on the ground" to keep her in her own home.
My brother visited her most days, we sisters brought food; in addition, my older sister shopped for her weekly and delivered food and supplies along with prepared food. She could still take care of showering and washing her hair. We had paid someone without her knowledge to deliver food three times a week, but that system had broken down. We were at least five years into dementia proper, with the possibility that we had been dealing with it a few years prior but without objective symptoms. Mother was 86.
DEMENTIA HINT: It is less important to know why than to know what. You may never be given a reason for the behavior. Just observe it and figure out what to do to adjust the environment for the person to keep them safe.
Installed
Stage 4 Early dementia
Clear-cut deficits on careful clinical interview
Difficulty performing complex tasks e.g. handling finances, traveling
Denial is common. Withdrawal from challenging situations
Usual care setting-might live independently-perhaps with assistance from family or caregivers
At this time our mother turned her financial affairs over to my sister who began paying bills, doing her taxes, and tending to other financial matters.
I mentioned that she had stopped teaching her Sunday School class, which she had done for many years. toward the end of Stage 3. In retrospect, I believe she knew she was unable to concentrate to study or that some other aspect of her cognitive skills were weakening and she knew it before we did. As noted in the GDS, it appears that she withdrew from this challenging situation.
I believe during this stage she stopped going to church regularly. Friends offered to pick her up, but she always made an excuse. This we could never figure out either, except that maybe she would forget when it was Sunday, forget to set the alarm, etc. She did not want to bother anyone, so it was easier to stay home than try to remember. This increased her social isolation because she lived out in the country and church activities had been her main social activity.
To add to the severity of this change, she also apparently cut way back on driving and eventually stopped herself from driving, but "blamed" it on her adult children. I'll do a post on that specific thing later. It is actually one of the things that we still laugh about. Her strong will still very intact, she would not accept that she really couldn't drive, but rather that we "meanies" made her quit.
So at the beginning of this phase, she was still driving, still living independently with assistance and oversight from all four of her children, but it was getting harder for the adult children to forsee the needs and make sure all of her needs were met. We knew that soon we would have to have more "boots on the ground" to keep her in her own home.
My brother visited her most days, we sisters brought food; in addition, my older sister shopped for her weekly and delivered food and supplies along with prepared food. She could still take care of showering and washing her hair. We had paid someone without her knowledge to deliver food three times a week, but that system had broken down. We were at least five years into dementia proper, with the possibility that we had been dealing with it a few years prior but without objective symptoms. Mother was 86.
DEMENTIA HINT: It is less important to know why than to know what. You may never be given a reason for the behavior. Just observe it and figure out what to do to adjust the environment for the person to keep them safe.
Installed
Saturday, January 30, 2010
VASCULAR DEMENTIA IN THE ELDERLY: 7 STAGES OF THE GLOBAL DETERIORATION SCALE /PART 2
This is the second of six posts based on information contained in the Global Deterioration Scale as adapted by Dr. Doug Drummond from Reisbert, B. et al from the Global Deterioration Scale. Stage 3 is set out in italics with personal observations to follow.
Stage 3 Mild Cognitive Impairment (MCI)
Earliest clear-cut deficits
Functionally normal but co-workers may be aware of declining work performance
Objective deficits on testing.
Denial may appear.
Usual care setting: Independent
At this phase our mother was still living independently. We noted that she began to put all her groceries out on the counter rather than in the cabinet, and this eventually included dishes also. This could have been due to deficits in her memory or deficits in organization. She was finding solutions and ways to cope.
We asked about the new method for food storage, but were never given an explanation. If we put all the items away, they would be back out the next time, so we stopped "helping" in that way.
She stopped drinking coffee, which she had always loved, because she couldn't operate the coffeemaker. Denial definitely kicked in at this phase. She insisted that she didn't like coffee any more, but always drank it when offered if we prepared it.
She could still operate the microwave at this phase, but lost that ability in the next few years.
While we all felt bad that she couldn't enjoy the simple pleasures like coffee anymore just because she couldn't operate the coffeemaker, we always weighed these things against her fierce need for independence. Independence always won, maybe too many times, but we kept watching her balancing on the tightrope, hoping she'd never fall, but praying that our safety net would catch her if she did.
She became unable to arrange for minor or major repairs, so those duties were handled by various of her children.
And she stopped teaching her Sunday School class, which she had done for about 20 years. We were not given a reason even when we pressed her. It was "just time", she said. She continued attending church and driving during this phase. That too, would stop in time, but for now, she was able to, and did faithfully.
DEMENTIA HINT: Observe what is changing, assist with what you can, and help the person with dementia to cope in the ways they have adapted in their environment unless it is unsafe or a health hazard.
Installed
Stage 3 Mild Cognitive Impairment (MCI)
Earliest clear-cut deficits
Functionally normal but co-workers may be aware of declining work performance
Objective deficits on testing.
Denial may appear.
Usual care setting: Independent
At this phase our mother was still living independently. We noted that she began to put all her groceries out on the counter rather than in the cabinet, and this eventually included dishes also. This could have been due to deficits in her memory or deficits in organization. She was finding solutions and ways to cope.
We asked about the new method for food storage, but were never given an explanation. If we put all the items away, they would be back out the next time, so we stopped "helping" in that way.
She stopped drinking coffee, which she had always loved, because she couldn't operate the coffeemaker. Denial definitely kicked in at this phase. She insisted that she didn't like coffee any more, but always drank it when offered if we prepared it.
She could still operate the microwave at this phase, but lost that ability in the next few years.
While we all felt bad that she couldn't enjoy the simple pleasures like coffee anymore just because she couldn't operate the coffeemaker, we always weighed these things against her fierce need for independence. Independence always won, maybe too many times, but we kept watching her balancing on the tightrope, hoping she'd never fall, but praying that our safety net would catch her if she did.
She became unable to arrange for minor or major repairs, so those duties were handled by various of her children.
And she stopped teaching her Sunday School class, which she had done for about 20 years. We were not given a reason even when we pressed her. It was "just time", she said. She continued attending church and driving during this phase. That too, would stop in time, but for now, she was able to, and did faithfully.
DEMENTIA HINT: Observe what is changing, assist with what you can, and help the person with dementia to cope in the ways they have adapted in their environment unless it is unsafe or a health hazard.
Installed
Wednesday, January 27, 2010
VASCULAR DEMENTIA IN THE ELDERLY:
First, let me start this post by saying that someone is reading these posts, but because I'm not very technological, I don't really know how many people. I am enjoying doing them, but think I would be better motivated if I had a larger audience than my two sisters and a few nieces and cousins. So far, the only written blog comment I've had is from my sister, and some emails from some very nice friends.
I'm not sure I have anything to say, but really love writing and sharing stories. I've always driven people crazy where I worked telling my stories, so now I can do it and only drive the people crazy who care to read them. And they can be driven crazy on their own timetable and in their own home. So it's a much better scenario.
Increasingly, as I approach the big six o, so many people of our age are dealing with elderly parents. My older sister, who is a few years older than I, has for the past three years or so emailed me details of the drama that many of her friends are living through with their parents.
They include some of the issues that have been dealt with in these posts: people taking advantage of the elderly, especially financially; care issues; placement issues; medical issues; quality of life versus independence; and all the things we have come to know represent life situations and choices both for the elderly and their baby boomer children, who are mostly grandparents and even great-grandparents themselves.
I'm not sure I have anything to say, but really love writing and sharing stories. I've always driven people crazy where I worked telling my stories, so now I can do it and only drive the people crazy who care to read them. And they can be driven crazy on their own timetable and in their own home. So it's a much better scenario.
Increasingly, as I approach the big six o, so many people of our age are dealing with elderly parents. My older sister, who is a few years older than I, has for the past three years or so emailed me details of the drama that many of her friends are living through with their parents.
They include some of the issues that have been dealt with in these posts: people taking advantage of the elderly, especially financially; care issues; placement issues; medical issues; quality of life versus independence; and all the things we have come to know represent life situations and choices both for the elderly and their baby boomer children, who are mostly grandparents and even great-grandparents themselves.
VASCULAR DEMENTIA IN THE ELDERLY: THE 7 STAGES OF THE GLOBAL DETERIORATION SCALE
Dementia staging is an inexact art, but several tools have been developed to help with ascertaining where your loved one may be in the process. The bigger problem is that no one knows definitely how long a stage will last, or for sure that every person with the disease will pass through every stage.
These tools can assist caregivers with understanding and planning. They more clearly define the disease progression and what they could face if the symptoms persist and the person continues to live with the disease. Many people with dementia have co-existing health problems, many of which may have contributed to the development of dementia in the first place.
We will set out the 7 stages offered in the Global Deterioration Scale developed by Dr. Barry Reisberg as adapted by Dr. Doug Drummond in six posts with personal observations about our own experience detailed after each stage. Stages 1 and 2 will be combined in one post. Please feel free to offer comments, tell us your own experience, and state your opinions about information offered in the posts.
Dr. Drummond's stages will be italicized for clarity of origin and personal observations will follow.
Dr. Drummond's information assesses the following:
Stage 1 Subjectively and objectively normal. Usual Care Setting-independent.
Stage 2 Subjective complaints of mild memory loss. Objectively normal on testing. No functional deficits. Usual care setting-independent.
As mentioned in previous posts, we spent a lot of time looking for hearing aids, less frequently, but still often, for glasses. My mother had a good habit of putting her purse in a certain place, and that helped as this stage moved forward. She would occasionally forget names or words during the second phase, and she expressed frustration when these eluded her.
An adaptation of the GDS by Dr. Doug Drummond and published in the American Journal of Psychiatry breaks the stages into "Deficits in cognition and function" and explains the "Usual Care Setting" for the person at that stage.
When the initial symptoms started slowly surfacing, our mother was still able to drive, manage herself and her household. In fact, one of the things we laughed about was that when we insisted that she get a physician (she honestly had not had a family physician in over 25 years-I do not suggest this as a plan to emulate), he gave her a little test of some sort to check her mental status. One of the things he asked her to do was write a paragraph. My sister, a professional writer, had taken her for the appointment, and said that Mother had written an eloquent paragraph with quite a few four syllable words written in her tiny flowing cursive. It certainly made us look like we were imagining things.
To sum up, we knew something was wrong, but we couldn't prove it. Just as well, we continued to monitor, grateful for every day that she was able to function on her own and live independently.
DEMENTIA HINT: Take your loved one for an examination by a physician if you suspect memory or cognitive issues. Early intervention or medication could help, but if not recommended, at least you have a baseline test for cognitive and functional ability.
Installed
These tools can assist caregivers with understanding and planning. They more clearly define the disease progression and what they could face if the symptoms persist and the person continues to live with the disease. Many people with dementia have co-existing health problems, many of which may have contributed to the development of dementia in the first place.
We will set out the 7 stages offered in the Global Deterioration Scale developed by Dr. Barry Reisberg as adapted by Dr. Doug Drummond in six posts with personal observations about our own experience detailed after each stage. Stages 1 and 2 will be combined in one post. Please feel free to offer comments, tell us your own experience, and state your opinions about information offered in the posts.
Dr. Drummond's stages will be italicized for clarity of origin and personal observations will follow.
Dr. Drummond's information assesses the following:
Stage 1 Subjectively and objectively normal. Usual Care Setting-independent.
Stage 2 Subjective complaints of mild memory loss. Objectively normal on testing. No functional deficits. Usual care setting-independent.
As mentioned in previous posts, we spent a lot of time looking for hearing aids, less frequently, but still often, for glasses. My mother had a good habit of putting her purse in a certain place, and that helped as this stage moved forward. She would occasionally forget names or words during the second phase, and she expressed frustration when these eluded her.
An adaptation of the GDS by Dr. Doug Drummond and published in the American Journal of Psychiatry breaks the stages into "Deficits in cognition and function" and explains the "Usual Care Setting" for the person at that stage.
When the initial symptoms started slowly surfacing, our mother was still able to drive, manage herself and her household. In fact, one of the things we laughed about was that when we insisted that she get a physician (she honestly had not had a family physician in over 25 years-I do not suggest this as a plan to emulate), he gave her a little test of some sort to check her mental status. One of the things he asked her to do was write a paragraph. My sister, a professional writer, had taken her for the appointment, and said that Mother had written an eloquent paragraph with quite a few four syllable words written in her tiny flowing cursive. It certainly made us look like we were imagining things.
To sum up, we knew something was wrong, but we couldn't prove it. Just as well, we continued to monitor, grateful for every day that she was able to function on her own and live independently.
DEMENTIA HINT: Take your loved one for an examination by a physician if you suspect memory or cognitive issues. Early intervention or medication could help, but if not recommended, at least you have a baseline test for cognitive and functional ability.
Installed
Tuesday, January 19, 2010
VASCULAR DEMENTIA IN THE ELDERLY:I CAN DO THAT MYSELF; YOU DON'T HAVE TO DO IT
The following is the sixth in a series of posts based on the list of dementia symptoms published by the Agency for Health Care Policy and Research, and published in the Johns Hopkins Guide to Understanding Dementia, which is referenced on this page. Information from the Guide is in italics for clarity of origin and followed by personal observations.
BEHAVIOR Personality changes emerge. For example, the person appears more passive and less responsive than usual, or more suspicious and irritable. Visual or auditory stimuli may be misinterpreted.
Our mother's strong personality remained largely intact for many years after she began to show symptoms . When we decided to have a "meeting" and confront her about her weight loss about 4 years into the symptoms, she stood strong against us, finally striking out by telling us that we could "stand to lose a little weight" and that we were "know it alls".
It was her only way of fighting back, with her words, which she had always used to good advantage. This was the point at which we insisted on having someone come into the home to help with cooking and housecleaning. She never agreed, but her good manners took over, and she ended up enjoying the company of the caregiver very much.
The caregiving was only about two or three days a week for 4 hours each day to begin. The only other noteworthy change of behavior during this period, and it could have been due to lack of social interaction, was that she became enamored of watching a particular bird that lived in a bush in front of the house. Watching it was not what concerned us, but rather that on some days, she seemed more intent on what the bird was doing than on having a conversation. That was unusual, and for her it was uncharacteristic behavior. She always preferred people to animals.
Again, we count our blessings. She was for the most part, her old self, just unable to remember, and the less she could remember, the more dangerous it became for her. Still, we were walking a tightrope, the line held taut between the decision to leave her at home with help or move her somewhere with more oversight.
DEMENTIA HINT: When it is time to change the environment, moving toward greater care, have a family meeting. Be firm, but kind. You cannot reason with a person who is too far down the road of dementia, but allow them to be a part of the decision as far as they can. Ultimately, you will have to do what you deem best and hope they cooperate. Installed
Wednesday, January 13, 2010
VASCULAR DEMENTIA IN THE ELDERLY: BUT I JUST ANSWERED THAT QUESTION:DEALING WITH DEMENTIA
This is the fifth in a series of posts based on symptoms delineated in the Johns Hopkins Guide to Understanding Dementia. Information from the guide will be italicized for clarity of origination and followed by personal observations .
LANGUAGE. The ability to speak or comprehend seems impaired, and the person may have problems following or participating in conversations.
Language held a vaunted place in our mother's life. Mealtime conversation often meant that word meanings were discussed, and someone was dispatched to bring the dictionary so that the matter could be cleared up before the potatoes grew cold.
As the dementia progressed, she often searched for words, substituting a definition for the word itself, almost a classic way of responding. Since her vocabulary was large, she could often come up with a simpler word, or more often than not, we jumped in to assist her, rather than causing her embarrassment.
The most difficult language symptom to everyone was the period when she repeated herself. It might be a story told several times in one day or one hour, or it could be the same question asked over and over even when adequate answers had been given.
Our mother is in a different phase now. She doesn't talk as much most days; other days she may talk ceaselessly, but it is different than the repetition phase. Other patients in the assisted living home where she now lives are in the repetition phase. It is taxing to answer their questions over and over, and it can stretch the patience of the most saintly of caregivers.
One has to wonder if at this phase they are just at the "jumping off" point between clarity and the vagueness of mind that is dementia. Perhaps the repetition is a way of trying to hold on to their reality.
Over time, though, this phase changes too and gives way to other symptoms or an odd silence which begins to make one feel that the person is slowly leaving.
DEMENTIA HINT: The repetition phase is difficult for the caregiver. This would be just one suggestion for handling it. Answer the question as many times as you (the caregiver) are tolerant of answering it, then change the subject. Distracting the person with an activity, snack, drink or a walk may help take their mind in a new direction. For the moment, anyway. Repeat as necessary. Call in help. Give yourself a break. Installed
LANGUAGE. The ability to speak or comprehend seems impaired, and the person may have problems following or participating in conversations.
Language held a vaunted place in our mother's life. Mealtime conversation often meant that word meanings were discussed, and someone was dispatched to bring the dictionary so that the matter could be cleared up before the potatoes grew cold.
As the dementia progressed, she often searched for words, substituting a definition for the word itself, almost a classic way of responding. Since her vocabulary was large, she could often come up with a simpler word, or more often than not, we jumped in to assist her, rather than causing her embarrassment.
The most difficult language symptom to everyone was the period when she repeated herself. It might be a story told several times in one day or one hour, or it could be the same question asked over and over even when adequate answers had been given.
Our mother is in a different phase now. She doesn't talk as much most days; other days she may talk ceaselessly, but it is different than the repetition phase. Other patients in the assisted living home where she now lives are in the repetition phase. It is taxing to answer their questions over and over, and it can stretch the patience of the most saintly of caregivers.
One has to wonder if at this phase they are just at the "jumping off" point between clarity and the vagueness of mind that is dementia. Perhaps the repetition is a way of trying to hold on to their reality.
Over time, though, this phase changes too and gives way to other symptoms or an odd silence which begins to make one feel that the person is slowly leaving.
DEMENTIA HINT: The repetition phase is difficult for the caregiver. This would be just one suggestion for handling it. Answer the question as many times as you (the caregiver) are tolerant of answering it, then change the subject. Distracting the person with an activity, snack, drink or a walk may help take their mind in a new direction. For the moment, anyway. Repeat as necessary. Call in help. Give yourself a break. Installed
Sunday, January 10, 2010
VASCULAR DEMENTIA IN THE ELDERLY: THANK GOD FOR WATERMELON ANGELS
This is the fourth of a series of six posts on symptoms of dementia delineated in a Johns Hopkins special report Guide to Understanding Dementia. The information from Johns Hopkins will be in quotes for this post with personal information following.
"SPATIAL ABILITY AND ORIENTATION" "Driving and finding one's way in familiar surroundings become difficult or impossible, and the person may have problems recognizing known objects and landmarks."
Related to driving, this particular symptom either did not show up, or was indistinguishable because our mother had never had ANY sense of direction and NO ability to navigate anywhere but known routes. Again, we felt we were lucky.
Going out of town, she always rode with someone else. But about the time she was getting fully into the symptoms of dementia, there was a tragic circumstance in the area where an elderly woman became lost in her car and died, maybe as a result of exposure. There are numerous dangers attendant to this symptom as the person could die of exposure in cold temperatures, dehydration in hot temperatures, be at the mercy of persons with ill intentions, and a number of other dangers too difficult to contemplate and too numerous to expound on.
Later in the illness, the actual night before my sisters were coming to take her to the doctor for further assessment of her mental status, she decided to take a walk. For months before this, she had not left the porch or yard area, so we were not worried about this particular thing, focusing instead on hazards around and in the house. She left the house where she had lived for almost 50 years and walked down the road about 1/4 mile. She turned around to walk back because it was getting dark.
She became disoriented, but kept to the pasture fence that ran alongside the county road. Then she decided she needed to get out of the road and tried to climb through the fence but fell and hurt her ribs. She was very likely directly in front of my brother's house, but he of course didn't dream that she would have ventured out on the road as she had not done that in several years. So no one in the family found her.
The next morning my sisters arrived to take her to the doctor and found her under the sheets in her bed, moaning slightly, with rock and grass covering her legs. She had managed to change into her nightclothes. Unsure what had happened, they were able to piece together the story in bits.
Mother stuck to her story that a young man hauling a load of watermelons had stopped and driven her back to the house. We could never confirm this. The road is low traffic and definitely not on the way to any major market, but she stuck to this. We called him our "watermelon angel."
After a trip to the emergency room, where it was determined that she had bruised or possibly cracked several ribs, her long independent run of 87 years came to an abrupt halt. She was not left alone after this, and we realized that we were very lucky that nothing more serious happened. It was late June, about seven years into the symptoms.
Note: I want to say again that this is our personal experience. Someone may read it and say we allowed our mother to stay in her home far too long, at some personal risk. While that may be true, I can also say that other families,(and I have had occasion to deal with many families in the throes of decision-making related to an aging parent), walked this tightrope between allowing the parent independence and forcing their hand for change.
DEMENTIA HINT: If your parent is still at home, go through the house and assess the dangers. Make a list, and correct what you can. Think of the house as you would when you are childproofing.
There is a service that allows your parent to wear a necklace or bracelet that will allow them to call for help, simply by pushing a button. There are some complications in using this service with a dementia patient, so a physician would need to evaluate whether it would be useful.
Installed
Tuesday, January 5, 2010
VASCULAR DEMENTIA IN THE ELDERLY: WHEN REASONING IS IMPAIRED
This is the third in a series of six posts with information taken from the Johns Hopkins Guide to Understanding Dementia. Information from the Guide will be italicized, and the additional information is from our own personal experience with our mother's long trek through dementia territory.
ABILITY TO REASON
"The person finds it difficult to respond appropriately to everyday problems, such as a flat tire. Or, a previously responsible, well-adjusted person may display poor judgment about social or financial matters."
I believe our family was lucky in regard to the latter part of the above symptoms. Our mother's normally adequate social skills stayed intact, and she transferred her financial matters to a trusted daughter when she realized she was no longer able to competently handle them.
The idea of losing the ability to respond appropriately to everyday problems manifested itself in all sorts of ways. Each time we visited mother either weekly or in my case, monthly, the car battery was dead. We always jumped the battery, ran the car for a while, and had it in working order when we left, only to find it dead on the next trip. We realized during this time that she had almost quit driving.
A month or so prior to the car being dead on arrival each visit, she had a wreck and ended up giving a man a check for $200 rather than call the police or insurance. "He was in a hurry to go to a funeral," she reported to us, and he had pressed her for a decision. That would never have happened prior to the dementia.
She didn't want to get the very large crushed-in place on her car fixed, either, but we insisted. One day was spent searching for a hubcap to replace the one that flew off after the fender bender. She had decided that she liked the way it looked without a hubcap.
There were other problems even more pressing than the car. We often spent the night at her home. It was a long ranchstyle with three bedrooms and a bath on one end, her room being separated from this part by a small distance. One night while visiting, my college age daughter woke me to say that her eyes were burning and watering, and she thought she smelled fire. It took me only a few seconds to recognize the odor. I grew up in the country; my daughter didn't.
It was skunk scent, so strong that it made our eyes water. We got up, moved to another part of the house, took all our clothes to the car, and tried to figure out what we had to do. The next day we moved to my mother-in-law's house nearby.
We hired a pest control company to trap the skunks and remove them from under the house. I am not exaggerating when I tell you that they removed 15 skunks and one feral cat. It took several weeks, and unbelievably, the skunks returned the next spring and tried to set up housekeeping again. We phoned our best friend, the pest control guy, and he again trapped skunks for several weeks, this time getting only seven. Although we had him put wire around the whole base of the house, which was old and was pier and beam foundation, they had dug with a dogged determination to return to their birthplace, and some succeeded. It felt like being under attack, but Mother was oblivious.
She had simply been living with the odor, not realizing, since her sense of smell was compromised, that her clothes and home at times smelled like a skunk den.
Around this same time, we had an infestation of ants in the windows, not termites, but daunting still. Our much loved pest control friend helped us out again.
We had to arrange for repair of her back porch on one visit, when it was noted that the floor was "spongy". My brother ended up taking out the larger part of the back porch down to the flooring studs and replacing all the underlayment and flooring. Mother admitted it needed to be fixed, but I suppose the hot water heater would have fallen through the floor before the problem really got her attention had we not attended to it.
During this same time, she had stopped using the shower in one bathroom because it was leaking and caused the problem on the porch. She didn't resume using the shower even after she was told she could.
Just to make sure we got everyone in on the action, my brother-in-law was assigned, no, he actually volunteered, to repair the bathroom. He got all the needed supplies, spent days hammering, sawing, nailing, repairing the plumbing, and when he finished, Mother had come to the conclusion that she would not use that bathroom any more, and she didn't.
DEMENTIA HINT: Try to enlist the person's cooperation in any project, but don't get mad if all the effort seems wasted at the time. It's just part of the confusion that surrounds dementia.
Installed
ABILITY TO REASON
"The person finds it difficult to respond appropriately to everyday problems, such as a flat tire. Or, a previously responsible, well-adjusted person may display poor judgment about social or financial matters."
I believe our family was lucky in regard to the latter part of the above symptoms. Our mother's normally adequate social skills stayed intact, and she transferred her financial matters to a trusted daughter when she realized she was no longer able to competently handle them.
The idea of losing the ability to respond appropriately to everyday problems manifested itself in all sorts of ways. Each time we visited mother either weekly or in my case, monthly, the car battery was dead. We always jumped the battery, ran the car for a while, and had it in working order when we left, only to find it dead on the next trip. We realized during this time that she had almost quit driving.
A month or so prior to the car being dead on arrival each visit, she had a wreck and ended up giving a man a check for $200 rather than call the police or insurance. "He was in a hurry to go to a funeral," she reported to us, and he had pressed her for a decision. That would never have happened prior to the dementia.
She didn't want to get the very large crushed-in place on her car fixed, either, but we insisted. One day was spent searching for a hubcap to replace the one that flew off after the fender bender. She had decided that she liked the way it looked without a hubcap.
There were other problems even more pressing than the car. We often spent the night at her home. It was a long ranchstyle with three bedrooms and a bath on one end, her room being separated from this part by a small distance. One night while visiting, my college age daughter woke me to say that her eyes were burning and watering, and she thought she smelled fire. It took me only a few seconds to recognize the odor. I grew up in the country; my daughter didn't.
It was skunk scent, so strong that it made our eyes water. We got up, moved to another part of the house, took all our clothes to the car, and tried to figure out what we had to do. The next day we moved to my mother-in-law's house nearby.
We hired a pest control company to trap the skunks and remove them from under the house. I am not exaggerating when I tell you that they removed 15 skunks and one feral cat. It took several weeks, and unbelievably, the skunks returned the next spring and tried to set up housekeeping again. We phoned our best friend, the pest control guy, and he again trapped skunks for several weeks, this time getting only seven. Although we had him put wire around the whole base of the house, which was old and was pier and beam foundation, they had dug with a dogged determination to return to their birthplace, and some succeeded. It felt like being under attack, but Mother was oblivious.
She had simply been living with the odor, not realizing, since her sense of smell was compromised, that her clothes and home at times smelled like a skunk den.
Around this same time, we had an infestation of ants in the windows, not termites, but daunting still. Our much loved pest control friend helped us out again.
We had to arrange for repair of her back porch on one visit, when it was noted that the floor was "spongy". My brother ended up taking out the larger part of the back porch down to the flooring studs and replacing all the underlayment and flooring. Mother admitted it needed to be fixed, but I suppose the hot water heater would have fallen through the floor before the problem really got her attention had we not attended to it.
During this same time, she had stopped using the shower in one bathroom because it was leaking and caused the problem on the porch. She didn't resume using the shower even after she was told she could.
Just to make sure we got everyone in on the action, my brother-in-law was assigned, no, he actually volunteered, to repair the bathroom. He got all the needed supplies, spent days hammering, sawing, nailing, repairing the plumbing, and when he finished, Mother had come to the conclusion that she would not use that bathroom any more, and she didn't.
DEMENTIA HINT: Try to enlist the person's cooperation in any project, but don't get mad if all the effort seems wasted at the time. It's just part of the confusion that surrounds dementia.
Installed
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