In the role of the caregiver, we
often do what we feel needs to be done at the immediate moment and sometimes give little thought to
ourselves as well as the
feelings that remain in those we are caring for.
Dignity
of the person with Alzheimer's Disease (AD) should not be diminished or ignored.
Preserving his/her dignity becomes one of the biggest
priorities. It is important to
remember that this is still a person who has feelings no matter what
form they take. It also takes extraordinary
empathy,
patience, and
understanding to undertake this
demanding role in a loving way.
Sensitivity
to the feelings of the person being helped can lead to
understanding and cooperation on both parts. The feeling of helplessness
recedes into the background without
jeopardizing the person’s self-esteem.
A
special brand of care is called for to help minimize the
affected person’s disabilities and maximize his/her remaining
abilities. You are
caring for the person with AD but
also caring
about the person. We must remember
that inside that body which is gradually losing its ability to
control itself is
a real person. A
soul still remains of someone’s mother,
father, sister, brother, spouse, etc.
Their spirit is alive and well.
You need to adapt to their needs, not make them adapt to ours.
We have to remember to treat them as a person who
still has needs, someone who had hopes and dreams, someone who
feels, someone who is still capable of giving and receiving love.
How would you like to be treated? Would you want all of your self worth stripped away? AD removes everything from its victim starting with the simplest and ending with the complications of the disease. The least we can do is to allow them to maintain the dignity we all deserve.
Imagine yourself waking up and not being able to remember many everyday things, then gradually losing the ability to even perform normal routine things like tying one's shoes. All of a sudden someone is trying to tell you how to do everything and when you must do it. I’m sure you would probably feel fear, anger, confusion and agitation. Are we really sure of what they can still process in their minds? Maybe the brain knows what should be done but is just unable to carry it out. We don’t know how each individual brain processes the world around them.
If
the caregiver can
remain calm and maintain an unhurried attitude
then most of the problems can be worked out and still leave a sense
of dignity for the person.
Don’t talk about them in front of them as if they are not there and
include them in conversations.
AD affects people in different ways. The way the disease progresses and the symptoms shown are as diverse as people are. Early diagnosis is helpful, but of course, that in itself can be hard to pin down. Caregivers face AD symptoms such as memory loss, sleep disturbances, confusion, communication impairments, incontinence, agitation, depression, aggression, falling. Even daily living activities such as cooking and cleaning, laundry and taking out the trash can be potentially dangerous to a loved one with AD.
She/he may forget to turn off the stove
or get lost taking out the trash. In fact the person with AD may
silently wish for relief from some of these stressful duties.
Changes in behavior and mood can be expected; such as, withdrawal
and anxiety.
The best defense for a caregiver is to understand how to react to
difficult and strange behaviors and be ready for them.
Forgetfulness and confusion: Remembering names, appointments, phone numbers, and details of a conversation are all examples of this lapse in short-term memory. Another problem is doing anything that involves several steps such as shopping and cooking, taking medicine, managing money and balancing a checkbook. Surprisingly long-term memory is usually the last part of the brain affected. It’s the memories of recent events that are lost.
Who hasn’t forgotten a name or a phone number before? We’ve all experienced that. Our lives are so full with information overload that a single incident of forgetfulness is normal. More serious forgetfulness like losing your way home or forgetting to make mortgage payments or in our particular case having too many credit cards and not knowing that was signed up for may be warning signs.
Problem solving and decision-making:
People with AD may not be able to respond quickly. Spatial ability
and orientation are affected also. Reading a map or
following directions, judging depth perception, and feeling lost in
known settings are all symptoms. Driving becomes a safety issue and the
number of accidents goes up.
Communication and language skills:
The person may no longer communicate with words. Rather, they
communicate with feelings. Because of
this, frustration levels can run high, both on the part of the
person with dementia and their caregiver. The communicated message
may not be received or understood. The person with dementia may not
be able to express themselves or even complete a simple sentence.
The person may have trouble finding the right word, writing, or
understanding what is being said so understanding the body language
is of utmost importance.
Incontinence:
It is a good idea for you to implement regular toilet times. This
will keep him/her on a schedule.
This part of the disease can be very
upsetting to them.
Wandering:
Wandering is not an uncommon trait of Alzheimer’s disease or
dementia. Stress in the variety of noise, clutter or crowding can
cause a resident to wander. The best idea is to reduce excess
stress. A person living with Alzheimer’s disease should
be settled in a quiet, clean, and spacious environment.
This will
eliminate many of the unwanted
stressors, which could cause your
loved-one to wander. Other reasons for wandering might be:
feelings of being lost, boredom, need to use the restroom.
Sleeping and Eating Problems:
People living with Alzheimer’s or dementia often experience sleeping
and eating problems. Common causes: discomfort, medication, pain,
dehydration, depression. Sometimes a person with AD cannot express their feelings; if you
sense a change in appetite or sleeping pattern has suddenly occurred
be aware of what might have triggered it. Dehydration is a known factor of
sleeping and eating disturbances. Make sure the resident is drinking
plenty of water. Feeling discomfort sometimes can’t be conveyed
depending upon the severity of the disease. Frequently monitor the
room temperature, lighting, noise level, and chair or bed position.
Agitation, Paranoia, Depression:
Depression can also cause excessive sleeping or eating. Increasing
their exposure to light and reduce or eliminate nap time or snack
time.
You know it isn’t their fault; it is their disease that is making
them scream, cry or yell terrible things out at you.
In order to prevent the person from
feeling lost or foreign to his or her environment,
provide them with familiar objects and reassure them quite
frequently that they are in a safe place. If the person displays
signs of boredom, get them involved in some activity. This will keep
them entertained but won’t frustrate them.
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Seems a bit overwhelming, doesn’t it?
Sometimes a
caregiver at home can deal with forgetfulness and confusion while
care giving, but aggressiveness, wandering and paranoia can really
put them over the edge. Many family
members have gone through the changes that take place in their loved
one, and have tried to educate their family and friends and
struggled to involve others in the care for their loved one. They
probably have been planning for their loved one’s future whether it
is financial, long-term care or end-of–life planning along with
dealing with all the symptoms of the disease, too.
The families may have jobs and/or
children and other things that add to their stress. The families
might be dealing with frustration and anger that is often associated
with giving care.
For some it becomes necessary to place their
loved one in a facility. It is a compassionate and professional staff combined with disease
specific training in the challenges of Alzheimer’s disease in an
appropriate facility that families are looking for when placing a
loved one. The absolute best would be
extraordinary care from phenomenal people that are well
trained in a state of the art facility.
The quality of care, staff, morale and the day-to-day operation of the long-term care institution have a profound impact on behavioral problems. A person with AD needs protection from the risks posed by the disease and can no longer meet his or her needs alone or with a family member’s help. Always remember that Alzheimer’s disease requires very special care making sure they are as comfortable and safe as possible. Sometimes it requires you to think on your feet. The symptoms are sometimes magnified when people are in an environment which is not their home, and which they may have been resistant to enter until they become more comfortable there.
The physical layout of a facility is designed for Alzheimer’s disease and normal age related concerns. A memory care facility will have activities modified and presented with disease symptoms in mind, and will also offer programs for the family such as education seminars or support groups and be strongly involved in community.
Understanding the different levels of
dependence and independence requires insight into the needs and
preferences of the individuals. You have to know how
to manage symptoms with techniques like distraction, reminiscence
and successful non-verbal communication.
A large part of communicating with anyone is knowing who this person
was prior to the dementia.
Although the individual may not be
speaking, their body language is alive with feelings. Is the person
happy, sad? Are they moving around in an agitated manner? What are
the eyes saying? Don’t forget the eyes are the ‘windows to our
soul’.
Sometimes a glimpse of the loved one’s facial expression or a special little smile is the only hope that families have of what used to be. No one can predict their loved one’s journey through this disease. Families should focus on the positive as much as possible and try not to dwell on what used to be, and try to avoid worrying excessively about your loved one’s future. The desire to have close relationships does not stop with a diagnosis of AD.
Help families find ways in which they and their loved one can relate and maintain closeness. Remember that the caregiver is still care giving the loved one even if they are not at home anymore and at a facility. They are looking out for their loved one's interest at all times.
Final Words for a Caregiver:
If
you are assertive without being domineering, helpful without being
overbearing, and kind without being patronizing, patient without
complaining, then the person with the disease is likely to respond
positively to your good intentions.
A gentle touch and a smile goes a long way.
The best that you can do is your best.