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.

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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.

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.

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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

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

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.
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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.






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