Accepting a loved one’s illness

Becoming a caregiver is not an easy task for family and friends. The role change is often involuntary and imposed. This new role also comes at an emotional time.

Family members, and in particular caregivers, must go through different stages in order to accept the illness affecting their loved one. Everyone goes through the process differently and the stages can overlap.

Denial

During this stage, caregivers may try to persuade themselves that:

• The symptoms are simply due to aging and not Alzheimer's disease.
• The doctor must have made a mistake.
• The situation is not as bad as it seems.
• The denial stage is important, as it allows the caregiver to take action and begin facing the disease.

Anger

Caregivers may experience anger towards anything that confirms the diagnosis of Alzheimer's disease:

• Anger towards the doctor
• Anger towards the system
• Anger towards the person affected
• Anger towards family members

Negotiation

During this stage, people try everything to slow down the process. The caregiver searches for a solution that could change the situation.

Depression

This stage comes with the realization that the process is inevitable and that no cure is available. The caregiver realizes that he or she will have to become the "guide" for the person with the illness.

Depression is also a consequence of exhaustion and stress related to the health condition of the loved one. Insomnias, wandering and agressiveness are often a source of stress that increases depression.

Acceptance

The emotions that caregivers experience at this stage are often contradictory. They may want the illness to end soon but may not want to lose their loved one at the same time.

The different kinds of grief

Anticipatory grief

Anticipatory grief is the grieving that takes place for people who are alive, but who little by little lose their mental capacities. They are physically present, but it is now impossible to have the same kind of relationship with them.

Grief for the previous relationship

People with Alzheimer's disease no longer recognize their circle of friends, are disoriented in time and space, and stop being able to express themselves correctly; in other words, their relationships are no longer the same.

Grief for previous roles

The ill person needs to find support, meaning that roles are often reversed: the child becomes the parent and vice versa. It is also common for a spouse to become a caregiver and tasks are then redistributed. This means the caregiver risks being overprotective or, conversely, becoming disengaged.

Grief for normality

People suffering from the disease exhibit uncommon behaviour, meaning that the life that came before must be mourned as well.

The loss of predictability

Planning ahead is no longer possible. The caregiver no longer has peace of mind and must now think for the other person.

The loss of meaning

Life no longer makes sense.

Caregivers will go through many periods of grief as time goes on. To help get through these periods, they must:

• Recognize and accept their grief
• Accept themselves as well as their feelings of impatience and other emotions
• Focus on what can be done rather than on what is no longer possible
• Organize their schedules so that they have time for themselves
• Seek out and accept the support of family and friends
• Surround themselves with living things (plants, animals etc.)
• Take time for rest and relaxation
• Cultivate their spiritual side

Communicating and interacting with an affected people

Types of communication

• Verbal: sounds, words, concepts etc
• Non-verbal: expressions, affection, behaviour etc
• Written/visual: cues, letters, images, gestures etc
• Sensory: touch, empathy etc

How do you communicate your message?

• Prepare the environment by eliminating distractions.
• Get the person’s attention
• Establish visual contact at the same level
• Lightly touch the arm or hand of the person
• Only express one message at a time and keep sentences short
• Watch for non-verbal cues
• React to emotions
• Repeat the same words
• Give visual cues
• Leave time for the person to understand and respond

Encourage conversation

• Avoid isolation
• Ask closed questions that can be responded to with yes/no/maybe/I don’t know (e.g.: Would you like to watch TV? Would you like to take a walk? Would you like a coffee?)
• Open questions require a more detailed response (e.g.: What did you do today? Would you like something to drink?)
• Talk about the past, happy times etc. Use points of reference like photos or music

The communication approach

• Go slowly, one step at a time
• Lightly touch the person’s arm or hand
• Give the person time to reflect and respond
• Speak clearly, keep your sentences short and express one message at a time
• Use visual cues

If they do not understand you

• Show that you recognize the facts (e.g.: I understand that this is frustrating for you)
• Reassure (touch the person’s arm, express empathy etc.)
• Use diversions (change the subject, change rooms, change activity, fill the time with something the person likes)
• Use validation (validate feelings, repeat sentences and verify that you understand, reassure, verify the feelings expressed etc.)

How do I say no?

• I would really like to but…
• It's a good idea, but I don't have time
• I think it,s too cold today
• Maybe another time

Don't forget:

• A person afflicted with Alzheimer's disease still has feelings and can perceive and appreciate loving gestures until the end of the illness
• We communicate everything through emotion, gestures and touch
• Taking someone's hand or smiling can communicate more than words
• Be conscious of the message that your body is communicating. A severe and impatient look can be just as hurtful as harsh words
• Include the person in your conversations. It is difficult to hear people talking about you as though you are not there
• Use visual cues. Put an image on a door to identify a room (such as a toilet to identify the bathroom). Point out and identify other household objects, such as kitchen utensils

Need help ?

For more information, consult the ressources for family support and the brochure Tips to better deal with anger – Guide for the family.