The Unique and Long Goodbye of Dementia

Feelings of loss and grief are profound and deep for those who have assumed the role of caregiver for a loved one. Those that care for a person with dementia have unique challenges associated with these emotions because of the characteristics of this disease.

Dementia is a degenerative disease that most experts agree occurs in stages with the patient getting progressively worse. There is no definitive answer in terms of how long these stages last. As caregivers, we are not given a time frame to try to emotionally prepare ourselves. Clues of degeneration initially slowly slip out in stage one as we experience loved ones forgetting words, names, events, and conversations. You may not initially be able to identify the cause. A dementia patient can also be doing well physically even performing daily tasks on their own independently at least in the early stages. This makes it all the more confusing for family, friends, and caregivers with the onset of new symptoms.

Cracks in communication skills eventually become more apparent as the disease progresses. Visible markers in the middle stage of dementia include increased confusion and anxiety. As cognitive abilities decline, the ability to engage in self-care tasks also diminishes. The person you knew and loved begins to slip away as the symptoms of dementia invade the body and the mind. Caregivers feel a huge sense of helplessness, sadness, and loss, as a loved one gets increasingly incapacitated. Often personality changes occur in the dementia patient. There is a sense of increased loss and separation from the person you knew and loved in this stage and the final one.

The final stage is particularly challenging with the losses of communication and comprehension that disable your ability as a caregiver to engage in meaningful conversation with your loved one.

One of the most devastating aspects of dementia is that as a caregiver you cannot experience a sense of closure with a person who has dementia. How do you grieve and say goodbye to someone who is physically still a part of your life but is emotionally, psychologically, and behaviorally absent? The person you knew has disappeared. In a sense the caregiver is forced to experience two deaths. The physical death and the death of the personality of a loved one. Questions regarding quality of life and end of life make this most difficult of times even more complex and overwhelming because of the nature of this disease. Caregivers are forced to read the minds of loved ones imagining what they are understanding and experiencing potentially creating more confusion and feelings of helplessness.

The losses created by dementia are gradual but powerful. They include:

Loss of personality
Loss of your partner or other close relationships because of dementia.
Loss of future dreams and a life together
Loss of their physical and emotional support
Loss of communication
Loss of other outside relationships relating to your role as primary caregiver
Potential loss of job as you assume the role of primary caregiver
Loss of shared responsibilities and clear, identifiable roles.
Loss of shared experiences and memories.

So what can you do as a caregiver to cope with the difficult challenges that dementia creates?

Recognize when these feelings of loss, sadness, and grief arise and get help for yourself from friends, family, and/or healthcare professionals.

Sometimes connecting with others who are in a similar situation can help you feel less alone and normalize all that you are feeling. Use chatrooms, dementia websites, Facebook support groups such as Caregivers Connect and in-person support groups as resources as you need them. Use them while you are a caregiver and seek them out after your loved one has died. This can really help cope with feelings of grief and give insights about what is the best next step for you.

Relish the moments of lucidity and quality time together that you have with a loved one with dementia.

Reminiscing can be a powerful tool for you as a caregiver and for the dementia patient. Accessing old memories through stories, music, and photographs can sometimes facilitate and revive the memories of people with dementia. Speaking in a native language can also enhance communication at times. Reliving those wonderful times together can help all participants have a sense of contentment.

All caregivers must be consistent in their interactions with a person with dementia. That consistency is imperative in terms of enhancing the possibility of engagement and a positive response from a person with dementia. It also helps caregivers know what they need to do.

Respond as compassionately as possible to the emotion of what the dementia patient is trying to express. Try to guess what they are feeling. For example, if they are asking for a person who has died say something like “You seem to be really missing mom. What do you miss most about her?” In these situations, it is OK to not be truthful if the truth will be painful and they will be forced to relive it

Distraction is an important skill for caregivers. If a dementia patient is being physically or emotionally aggressive using distraction can calm them down. Distraction can also help in instanced like the one above when what they are asking can require an answer that will cause distress.