About Alzheimer's and its effects
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. Speaking distinctly and slowly will also help.
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. Trouble swallowing is also a definite eating problem and is seen in many AD situations.
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.