Showing posts with label Stages of Caregiving. Show all posts
Showing posts with label Stages of Caregiving. Show all posts

Thursday, June 18, 2015

STAGES OF DEMENTIA

(alzheimers.net)
What are the 7 stages of  Alzheimer's Disease?
Every person with Alzheimer’s disease experiences the disease differently, but patients tend to experience a similar trajectory from the beginning of the illness to its merciful end. The precise number of stages is somewhat arbitrary. Some experts use a simple three-phase model (early, moderate and end), while others have found a granular breakdown to be a more useful aid to understanding the progression of the illness.
The 7 Stages of Alzheimer's Disease
The most common system, developed by Dr. Barry Reisberg of New York University, breaks the progression of Alzheimer’s disease into seven stages. This framework for understanding the progression of Alzheimer’s disease has been adopted and used by a number of healthcare providers as well as the Alzheimer’s Association.
Here is summary of the seven stages of Alzheimer’s disease based on the ideas of Dr. Resiberg:

Stage 1: No Impairment

During this stage, Alzheimer’s disease is not detectable and no memory problems or other symptoms of dementia are evident.

Stage 2: Very Mild Decline

The senior may notice minor memory problems or lose things around the house, although not to the point where the memory loss can easily be distinguished from normal age related memory loss. The person will still do well on memory tests and the disease is unlikely to be detected by physicians or loved ones.

Stage 3: Mild Decline

At this stage, the friends and family members of the senior may begin to notice memory and cognitive problems. Performance on memory and cognitive tests are affected and physicians will be able to detect impaired cognitive function.
Patients in stage 3 will have difficulty in many areas including:
  • finding the right word during conversations
  • remembering names of new acquaintances
  • planning and organizing
People with stage three Alzheimer’s may also frequently lose personal possessions, including valuables.

Stage 4: Moderate Decline

In stage four of Alzheimer’s disease clear cut symptoms of Alzheimer’s disease are apparent. Patients with stage four Alzheimer’s disease:
  • Have difficulty with simple arithmetic
  • May forget details about their life histories
  • Have poor short term memory (may not recall what they ate for breakfast, for example)
  • Inability to manage finance and pay bills

Stage 5: Moderately Severe Decline

During the fifth stage of Alzheimer’s, patients begin to need help with many day to day activities. People in stage five of the disease may experience:
  • Significant confusion
  • Inability to recall simple details about themselves such as their own phone number
  • Difficulty dressing appropriately
On the other hand, patients in stage five maintain a modicum of functionality. They typically can still bathe and toilet independently. They also usually still know their family members and some detail about their personal histories, especially their childhood and youth.

Stage 6: Severe Decline

Patients with the sixth stage of Alzheimer’s disease need constant supervision and frequently require professional care. Symptoms include:
  • Confusion or unawareness of environment and surroundings
  • Major personality changes and potential behavior problems
  • The need for assistance with activities of daily living such as toileting and bathing
  • Inability to recognize faces except closest friends and relatives
  • Inability to remember most details of personal history
  • Loss of bowel and bladder control
  • Wandering

Stages 7: Very Severe Decline

Stage seven is the final stage of Alzheimer’s disease. Because Alzheimer’s disease is a terminal illness, patients in stage seven are nearing death. In stage seven of the disease, patients lose ability to respond to their environment or communicate. While they may still be able to utter words and phrases, they have no insight into their condition and need assistance with all activities of daily living. In the final stages of the illness, patients may lose their ability to swallow.


The 7 Stages of Dementia Global Deterioration Scale The Global Deterioration Scale (GDS), developed by Dr. Barry Reisberg, provides caregivers an overview of the stages of cognitive function for those suffering from a primary degenerative dementia such as Alzheimer's disease.

It is broken down into 7 different stages. Stages 1-3 are the pre-dementia stages.

Stages 4-7 are the dementia stages.

Beginning in stage 5, an individual can no longer survive without assistance.

Within the GDS, each stage is numbered (1- 7), given a short title (i.e., Forgetfulness, Early Confusional, etc followed by a brief listing of the characteristics for that stage.

Caregivers can get a rough idea of where an individual is at in the disease process by observing that individual's behavioral characteristics and comparing them to the GDS. (From geriatric- resources) _____________________________

The Global Deterioration Scale for Assessment of Primary Degenerative Dementia Level 1 � NO COGNATIVE DECLINE: No subjective complaints of memory deficit.

No memory deficit evident on clinical interview.

Level 2 � VERY MILD COGNATIVE DECLINE (Age Associated Memory Impairment): Subjective complaints of memory deficit, most frequently in following areas:

(a) forgetting where one has placed familiar objects;

(b) forgetting names one formerly knew well.

No objective evidence of memory deficit on clinical interview.

No objective deficits in employment or social situations.

Appropriate concern with respect to symptomatology.

Level 3 � MILD COGNATIVE DECLINE (Mild Cognitive Impairment): Earliest clear-cut deficits.

Manifestations in more than one of the following areas:

(a) patient may have gotten lost when traveling to an unfamiliar location;

(b) co-workers become aware of patient's relatively poor performance;

(c) word and name finding deficit becomes evident to intimates;

(d) patient may read a passage or a book and retain relatively little material;

(e) patient may demonstrate decreased facility in remembering names upon introduction to new people;

(f) patient may have lost or misplaced an object of value;

(g) concentration deficit may be evident on clinical testing.

Objective evidence of memory deficit obtained only with an intensive interview.

Decreased performance in demanding employment and social settings.

Denial begins to become manifest in patient.

Mild to moderate anxiety accompanies symptoms.

Level 4 � MODERATE COGNITIVE DECLINE (Mild Dementia):

Clear-cut deficit on careful clinical interview.

Deficit manifest in following areas: (a) decreased knowledge of current and recent events;

(b) may exhibit some deficit in memory of ones personal history;

(c) concentration deficit elicited on serial subtractions;

(d) decreased ability to travel, handle finances, etc.

Frequently no deficit in following areas:

(a) orientation to time and place;

(b) recognition of familiar persons and faces;

(c) ability to travel to familiar locations.

Inability to perform complex tasks.

Denial is dominant defense mechanism.

Flattening of affect and withdrawal from challenging situations frequently occur.

Level 5 � MODERATELY SEVERE COGNITIVE DECLINE (Moderate Dementia): Patient can no longer survive without some assistance.

Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated.

Frequently some disorientation to time (date, day of week, season, etc.) or to place.

An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s.

Persons at this stage retain knowledge of many major facts regarding themselves and others.

They invariably know their own names and generally know their spouses' and children's names.

They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.

Level 6 - SEVERE COGNITIVE DECLINE (Moderately Severe Dementia): May occasionally forget the name of the spouse upon whom they are entirely dependent for survival.

Will be largely unaware of all recent events and experiences in their lives.

Retain some knowledge of their past lives but this is very sketchy.

Generally unaware of their surroundings, the year, the season, etc.

May have difficulty counting from 10, both backward and, sometimes, forward.

Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will be able to travel to familiar locations.

Diurnal rhythm frequently disturbed.

Almost always recall their own name.

Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment.

Personality and emotional changes occur.

These are quite variable and include:

(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;

(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;

(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;

(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action.

Level 7 - VERY SEVERE COGNITIVE DECLINE (Severe Dementia): All verbal abilities are lost over the course of this stage.

Frequently there is no speech at all -only unintelligible utterances and rare emergence of seemingly forgotten words and phrases.

Incontinent of urine, requires assistance toileting and feeding. Basic psychomotor skills, e.g., ability to walk, are lost with the progression of this stage.

The brain appears to no longer be able to tell the body what to do.

Generalized rigidity and developmental neurologic reflexes are frequently present. __________________

The alzheimers association now has a plain English version of the seven stages, available at http://www.alz.org/AboutAD/Stages.asp

From Act mental health consultants-- A simplified version of 7 stages. Seems to describe the problems and care requirements seen in the nursing home. Very understandable.

Also gives range of time duration for each stage. http://www.actmentalhealth.com/News%202000,%2011-12.htm __________________

By the way, most doctors do not bother trying to determine the stage the person is in - except that they might indicate mild, moderate or severe.

The doctors are more interested in treating the individual patient and the problems he/she is having at the time of the visit.

They find no value in staging the dementia patient.

Caregivers tend to want the staging system to get an idea of where their LO is in the process and what lies ahead. -----------------------------------------

A simplified checklist version of the seven stages is the Functional Assessment Staging Test (FAST).

Note that stages 6 and 7 are broken down into smaller steps.

1 No difficulties, either subjectively or objectively

2 Complains of forgetting location of objects; subjective word finding difficulties only.

3 Decreased job functioning evident to coworkers; difficulty in traveling to new locations.

4 Decreased ability to perform complex tasks (e.g., planning dinner for guests; handling finances; marketing).

5 Requires assistance in choosing proper clothing for the season or occasion.

6a Difficulty putting clothing on properly without assistance.

6b Unable to bathe properly; may develop fear of bathing. Will usually require assistance adjusting bath water temperature.

6c Inability to handle mechanics of toileting (i.e., forgets to flush; doesn't wipe properly).

6d Urinary incontinence, occasional or more frequent. 6e Fecal incontinence, occasional or more frequent.

7a Ability to speak limited to about half a dozen words in an average day.

7b Intelligible vocabulary limited to a single word in an average day.

7c Nonambulatory (unable to walk without assistance).

7d Unable to sit up independently.

7e Unable to smile.

7f Unable to hold head up.

Comment on the FAST by dementia expert Geri Hall "You look for the stage which is the highest number where your person has symptoms because the losses are cumulative.

If a patient is in stage 3, I expect them to have some issues with money, working, driving, shopping, short-term memory, time sense, etc --

In stage 4 I see issues with driving, shopping, cooking, cleaning, doing chores, participating in higher level activities and social affairs.

But the person brings the deficits from stage 3 with them into stage 4. The deficits don't resolve.

And, there are those of us who work with these patients day to day who strongly disagree with several points on the FAST Scale.

The one major issue is bathing. Problems with bathing are the hallmark of the beginnings of stage 5.

G Hall recaps the seven stages --- Problems with driving, managing money, and shopping = stage 3.

If you notice she can't cook, clean, or do the laundry = stage 4.

If she requires help (or strong encouragement to bathe, clean her teeth, or select different clothing each day = stage 5.

If she has trouble with falling or bowel and bladder control and/or falling, she is in stage 6.

If she can no longer walk, stage 7.

The losses are cumulative and not every patient has exactly the same losses.

Tuesday, June 9, 2015

F I DON’T DO IT, WHO WILL? TRANSITIONING FROM DAUGHTER TO CAREGIVER



(Donna Webb, The Bear Hug Waltz)

At 93 years old, mom is fragile and strong, smart and sometimes ‘fuzzy’.  She has a great sense of humor and a twinkle in her blue eyes.  If she gets mad, she could give you such a whop, if she wanted to …which she doesn’t.

We had been looking after mom for quite a few years.  Living next door made that pretty easy.  Each year we have had to take on more and more of her responsibilities, laundry, shopping, paying bills and eventually food preparation.

She continued doing some simple cooking, fixed microwave meals and of course had to have a dish of frozen yogurt before bed!  That was her daily ‘fix’!  I started having meals on wheels delivered to her when the cooking became something that she really should not be doing any longer.  It was becoming dangerous for her.  The meal that came she could just pop in the microwave, she could handle that ok….. for awhile.

She was still able to toilet herself.  She had a port-a-potty in her bedroom to use, or when she was in the front room she could use the regular bathroom.

But bathing was being eliminated more and more, so I needed to step in and assist with that, as well as doing her hair and nails.  No problem, as I said, we just lived next door.  You do what you need to do.

On November17, 2005, our home burned, we moved in with mom that day.

So, now what?

Thank God we had a place to go.  We slept in the front room on the hide-a-bed.  Since we were living here now, we could tend to mom much more effectively.  She was still able to look after herself during the day while we were at work.  But that would soon be coming to a halt.

Mom had been living alone for many years and as a result had established very bad habits and routines, or I should say lack of routines.  As she got older her once very routine day turned into a do whatever, whenever or not at all day!  That included sleeping, eating, bathing and so on.  She would get up at all hours of the night, sometimes getting dressed and having breakfast at midnight!  Well, needless to say we lost a lot of sleep for awhile until we could get her into a good routine, for all of our sakes!  I got her on a schedule of when to get up, eat, take a nap and go to bed.  She still will frequently rebel against the schedule or routine, “I will go to bed when I want to!”  Having a routine was absolutely necessary for our sanity and even though she doesn’t realize it, so very beneficial for her.

Now we make sure she gets a good breakfast, at breakfast time!  She gets her correct meds when she should have them, and make sure she drinks enough liquids, which she always fell short of her whole life.  Water consumption is critical for everyone, but certainly for the elderly.  She usually takes 2 to 3 hours to eat her breakfast so most of the time she doesn’t eat lunch, maybe just a light one.  Then I fix the three of us supper, which is often a challenge.  Getting accustomed to her kitchen took me awhile.  I lost my creative cooking ability for awhile, but of course, I still had to cook.  Cooking for mom has been the real challenge as she cannot chew many foods, she can’t smell or taste either.
So, I have the task everyday to find and prepare foods that she can eat, that are colorful, have the right texture, good for her, and then make up weekly menus using those foods.  It has been a chore.

Since I was living here, it was easier to help mom with her personal care needs, like bathing.  I’d run the water, put her special seat in the tub for her, and whatever assistance she might need.  Then I would let her get herself washed up, dried off and dressed for bed.  One particular bath night, I had to wake up to the realization that she could not take baths this way anymore.  It was getting difficult for her, and she was washing maybe two body parts!  So, the next bath night, I had her sit on the end of the seat and do a sponge bath using the sink.  I was still trying to allow her some independence and privacy.  Truth is, if water never touched her body again, she would be just fine with that!  It was all to much work for her.

The reality of it all was, I was postponing or ignoring the inevitable fact….I needed to giver her her baths, start to finish.  I had been doing her hair at the kitchen sink, that worked ok, but it to would have to change.  But this bath thing, I knew she was barely washing at all, but what do I do?  I knew what I had to do, I just had a hard time coming to grips with it…moving into the full time role of caregiver.  If I don’t do it, who will?

Realizing and acknowledging was the first step in removing my “daughter’s coat” and putting on my “caregiver’s coat”.  When I finally made the decision to take over mom’s bath time completely, the coat was on all the way.  It is a mental shifting of gears, a pocketing of emotions that only those who have had to do it can understand.  It is likened to a death and burial.  A changing of the guard.  The daughter is now the nurse…dietician…rule maker…comforter…prison guard or warden...companion…all-around caregiver…mom’s mom.

Where did the daughter go to?  Well, she is beginning to find herself again.  It has taken almost a year, but it is happening little by little.  Being able to share with others helps me to be somebody, to have an identity.  My world became very isolated and lonely.  That too is changing.

On Easter of 2006, mom fell and broke her ankle.  That same week she passed out from a TIA.  That’s a little clot that makes a nuisance of itself then disappears – my medical terminology.  Thus bringing more trials to a already difficult situation.

Going from the broken ankle to the passing out, mom spent several days in the hospital going through a battery of tests, all which showed nothing.  They gave her different meds to thin her blood and slow her heart rate down, and also changed her blood pressure meds.  All of which put her in a stupor like I have never seen before.  I actually thought she was dying.  Being in a strange place, not having someone around her all the time, not being handled in a way that made her feel secure, combined with the effects of the meds, I really thought I was losing her.

The day I was to bring her home, I took charge, got her dressed gave her instructions as to how to move and gave her the security that she had not gotten while there.  She responded so well with understanding and strength, I was just a hollering!  I had my mom back!  I couldn’t wait to get her home and give her the care I knew she needed.

So, we learned how to function in a cast from her knee down.  The first time I moved her, I thought she had gained 50 pounds!  But I quickly got used to the added weight. She coped very well with it.  When she was in bed she would just flip that leg back and forth like nothing… there was no pain that’s why.

See, it had actually been over two weeks before they actually discovered her ankle was broken!   That was after being in the emergency room, having x-rays and so forth!  A therapist had come to work with mom and she was concerned that mom’s foot still hurt so much.  She really felt there was a fracture.  She got after one of the Drs., and we got an appointment for her.  New Drs., and new x-rays, and the fracture was found!  So, mom was going through all those days in pain, we were told it was a sprain!  When she stayed in the hospital, they only wrapped her foot in an ace bandage, and never once x-rayed it in the five days she was there!

She was in a cast for about a month, and then a month of getting used to putting her weight on her foot and ankle.  At the end of that month I stood her up and asked her to put some weight on her foot, asked her how it felt.  She said it felt like she wanted to walk!  I said let’s go out to the front room!  She walked through the whole house, as strong as can be!  I told her she was off and running.  She said, well I’m off, but I’m not running anywhere!

There is no summing up of this chapter or others to follow.  It is a job that continues 36 hours a day, day after day, month after month, however long you must wear that coat.  If it wasn’t for my husband, I couldn’t even do this, he is the only helper I have.  We do have “mommie” sitters that we hire from time to time so we can actually go somewhere together!  It is his love and commitment to my mom that allows him to put on his “caregiver’s coat” when he is needed.



Friday, June 5, 2015

ASKING FOR HELP



(CaregiverSpace.Org)
Perhaps the management skills, fierce loyalty, and big heart that make us such great caregivers also make it difficult for us to ask for assistance.  We tend to see it as a sign of weakness and we feel that our loved ones can't afford to see us as weak.  But listen: when you ask for help you are putting yourself in a vulnerable state.  Others recognize that and respect you for it.  Sharing our vulnerabilities is the basis of human connection.

We understand that as a caregiver, your natural state is a giver of support rather that a receiver.  It's time to change that.  Giving without receiving is an unsustainable practice: if you give all of your time and energy away, you won't have any left to give.  But is you allow yourself a respite with some help, you can re-fill your tank so you can keep moving forward.

Make a list of the tasks you need to accomplish.  Which ones are easy for someone else to pick up?  Which ones do you want to do?  Leave this list somewhere easily accessible and when someone calls check the list and let them know what you need.  Also try to get comfortable reaching out rather that waiting for a friend to call.  Your friend's phone call might not coincide with your crisis.

Have you ever had a really stressful week and found yourself with the flu the next?  Your stress level has a huge influence on your immune system.  Imagine how your body is reacting to the stress level from the full time job of caregiving!  When you're afraid of appearing weak by asking for help with a couple of tasks, think about how much help you will need if you get sick by taking on too much.

The help you need may not only be with tasks and responsibilities.  Be aware that as a caregiver you are prone to loneliness, depression, and fatigue.  If you feel like you may need some emotional support, don't be afraid to ask for it.  It can be from a friend, relative, therapist or support group.  Use your computer as your lifeline-if it's the middle of the night and no one is available, go online and reach out. Check out our forums and chat rooms. Even if no one responds immediately, it is a relief to get it off of your chest.
Take it from us: we wouldn’t have gotten through the rough times if we didn’t ask for a little help. You are not alone in this journey, we’re coming with you.