Trust, Respect, support
Caregivers can either be family members (whose role likely has dramatically changed) or paid employees who are interjecting themselves into sensitive areas of the patient’s life. The role and responsibilities of a primary caregiver can be very demanding and at the same time, deeply rewarding. It is a sensitive tightrope where caregivers help take care of the patient’s basic needs, but also impact the patient’s level of comfort, outlook and quality of life. Caregivers must respect the wishes of those they care for encouraging independence, pride, competency and privacy.
Open communication with the patient
Strong and regular communication with the patient’s loved ones
Maintain a safe, clean and comfortable home environment
Meet the patient’s personal hygiene and grooming needs
Administer and manage medications
Maximize nutrition, exercise, sleep and social activities, as appropriate
Promote the patient’s emotional and intellectual well-being acting as an advocate
Ensure medical appointments are scheduled and kept
Take notes and keep them in an orderly and open manner
Evaluate the level of care the patient needs on an ongoing basis
Help ensure financial and legal matters are in order
Patient/Caregiver Communications and Behavior Can Create a Genuine Bond
For a productive and rewarding relationship, patients and caregivers should bear in mind these basic tips:
Exercise compassion: caregiver for patient and patient toward caregiver. Acknowledging and showing compassion for each other’s circumstances will lead to more honest communication.
Practice respect: Mutual respect puts the patient and the caregiver on the same plane and encourages open communication and a deeper relationship.
Learn to ask for help: Both the patient and the caregiver need to voice their needs and ask for help. To build trust, the patient needs to be able to ask for help and get a timely response. In turn, the caregiver needs to ask clarification when they do not understand the needs of the patient and also reach out to the family when they feel overwhelmed or need help.
Listen carefully: To foster a stronger bond, be an active listener, ask plenty of questions and try not to interrupt one another. Both patient and caregiver should feel comfortable voicing their endurance and strength and emotional limitations.
Be encouraging both to boost the patient’s self esteem and to make the caregiver feel appreciated.
Good communication, empathy, respect and patience goes a long way in creating a caring relationship and an environment that provides comfort and healing.
support for the caregiver
As a primary caregiver, it is a balancing act to juggle your own life with your desire to be present and do your best to support the patient. As a result it is not unusual for caregivers to feel overwhelmed, physically exhausted or emotionally drained. It is stressful and emotionally-draining, even while it is rewarding. It is always important to know when to take breaks and when to ask for help.
It is important to let others know what they can do to help support you. Be honest about what is happening with the person you are caring for and how it is affecting you. Some signs of an overloaded caregiver include: irritability, apathy, withdrawal, fatigue, appetite changes, increased use of alcohol, or even anger. As a caregiver if you are feeling any of these emotions, these are some recommendations:
Arrange for respite care from friends or family that will allow you to take a break
Focus your efforts on the patient and ask for help with the household chores
Make time for yourself to exercise, read, relax, or pursue your hobby, even if it is just one hour a day
Reach out to good listeners
Spend time outside; get some fresh air
Join a caregiver support group
Receiving Care graciously
It is very common for people to feel uncomfortable accepting care. It may be because they have always been “in charge” and have a hard time when someone else is doing things for them or it may be that they feel it is an inconvenience to the caregiver and they do not want to “be a bother.” If the caregivers are children and the patients are their parents, this can lead to an uncomfortable standoff. As an adult child, here are some messages you may find helpful to discuss with your parent:
- Your role and your desire is to empower them. Communicate that you fully support their goal to be self sufficient and at the same time you want them to be safe
- As a caregiver, you will do your best to honor their goals, values and preferences
- You respect their feelings and know that it can be hard or frustrating to become more reliant on others, but that this is part of aging and is a very natural process that everyone will experience
- By accepting some help, they in fact will have more time and energy to focus on the things that are really important to them.
- You enjoy helping them and spending time together; this experience is important to you
- You would like to openly discuss, define and establish boundaries that work for each of you
- It would be very helpful and encouraging if they accepted your care with calm, grace and resolve
- If they do not accept care from you then you both will need to investigate bringing in a health aide and that you are open to this if it is what they prefer
As the patient, here are some things you may find helpful to discuss with your caregiver:
- Your desire to be independent and do as many things as you can, safely on your own
- The physical, mental and social activities you enjoy and which are most important to you
- The practical, task-oriented responsibilities you would like the caregiver to focus upon as well as areas where you would like to be involved
- The kinds of things that give you joy and a sense of accomplishment
- Your fears and areas where you would appreciate their full support
Most of all, it is important to: have open, honest communications; look for and investigate options that align with your goals and focus on the areas where you find common ground; and be patient and compassionate with one another. It is likely both patient and caregiver will need to compromise, but the goal is to build a win/win, happy and healthy relationship.
Dementia and Alzheimer’s Disease
Although dementia and Alzheimer’s are sometimes mistakenly used interchangeably, they are different. Dementia is not a single disease but instead is a general term to describe impairment in memory, communication and thinking. Alzheimer’s is a type of dementia. Although the risk of dementia increases with age, dementia is not a natural part of the aging process. With dementia, the symptoms are severe enough to affect the person’s daily activities and safety and they will most often require a caregiver. There are approximately 47.5 million dementia sufferers worldwide and one new case is diagnosed every 4 seconds. There are approximately 5 million people in the US with Alzheimer’s and the majority are 65 and older. However, 200,000 Americans are under the age of 65 and have what is called “Early-onset Alzheimer’s.”
Symptoms of dementia can vary widely but at least two mental functions must be significantly impaired to be considered dementia:
- Communication and language
- Ability to focus and pay attention
- Reasoning and judgment
- Visual perception
Alzheimer’s and vascular dementia are the two most common forms of dementia. Alzheimer’s is a fatal disorder that results in the loss of brain cells and function and affects 60-80% of those with dementia. Vascular dementia occurs after a stroke and accounts for about 10% of all dementia cases.
If you are experiencing memory problems, it is important to see your physician. Some memory loss and other cognitive issues are caused by medication side effects, vitamin deficiencies or other conditions that can be reversed with proper treatment. For example, in the elderly a urinary tract infection (UTI), which is easily treated, can manifest itself as confusion instead of increased frequency. In some cases it is helpful to write down symptoms of memory loss or other cognitive difficulties and how often they occur over a time period of a week or two and then share these symptoms with your health care provider so they can advise you or do further testing if appropriate.
Care giving for Those with Alzheimer’s
Care giving can be exceptionally stressful for people with Alzheimer’s since they often struggle with:
- Confusion -- time and place
- Completing common tasks
- Planning or problem-solving
- Memory loss
- Trouble understanding visual images and spatial relationships
- Difficulty speaking or writing
- Misplacing things
- Decreased or poor judgment
- Sensitivity to touch and loud noises
- Withdrawal from work, family and social activities
- Changes in mood and personality – apathy, depression, anger, frustration
Improving communication is critical to succeed with day-to-day living activities, reducing their fear/anxiety, increasing cooperation and enhancing their changed self-esteem. Some good communication tips are:
- Making eye contact and calling the person by name
- Keeping sentence structure simple ( However, don’t talk as though you are speaking with a child. No baby talk)
- Breaking down tasks into small steps
- Offering very simple, step by step instructions. Repeating instructions using different words
- Allowing time for the person to think, gather their thoughts and respond
- Limiting the number of choices you provide
- Writing things down or using visual clues
- Allowing time to communicate. Don’t be rushed. Be patient and supportive
- Avoid arguing. If you disagree with something they are saying, just let it be
- Being positive, gentle and polite – “ Let’s try this…”, Please do this…”
- A warm touch and smile can go a long way
People with Alzheimer’s can become frustrated, agitated and aggressive as the disease progresses and they lose more and more control. Often this behavior occurs in response to a specific reason; for instance the person is in pain, feels a great deal of stress, may not be getting enough sleep or is reacting to changes in their environment. To help counteract this frustration, try:
- Speaking calmly and offer reassurance
- Making sure you stick to the routine
- Bringing them a loved object or photograph to help them feel secure
- Puting on soothing music
- Reading them a favorite book
- Taking a walk outside