Written by Charlene Thurston, R.N., A.N.P.

“You matter because you are. You matter to the last moment of your life and we will do all we can, not only to help you die peacefully, but also to help you live until you die.” —Dame Cicely Saunders, M.D., Founder of the present day hospice movement

How do we attend to persons who have lost their ability to communicate with us in language or behaviors with which we’re familiar? Does it matter whether or not we visit with loved ones who may not remember us or who may forget we’ve visited five minutes after we’ve left? Should we continue correcting our loved ones with dementia when they think it’s the wrong day, place, person, etc? How should we interact with people whose thinking ability and memory no longer function normally? These are all questions that leave us searching for answers as we try to care for loved ones with dementia or other conditions that affect cognition or consciousness.

Recently in hospice, we have been trying to address the issue of how to improve the quality of life for patients and families faced with dementia. To date, most of our efforts have focused on how to support family members who provide care for their loved ones, while encouraging them also to care for themselves. Learning how best to interact in ways that keep both patients and families calm and loving is a difficult task, but one which would be enormously beneficial to all. As many of our readers know, we’ve worked closely with Alzheimer’s Services of the Cape and Islands and Elder Services of the Cape and Islands to bring information and support to caregivers of persons with dementia. Also, over the past several weeks, we at HCON have been learning about a program developed in Seattle, Washington, to help caregivers effectively manage difficult behaviors.

Beyond managing behaviors, however, is the importance of remembering that, although the person with dementia may be difficult to recognize in his/her present state of functioning, (s)he is the same person. Locked within is the essence of the person, no matter how unrecognizable because of the symptoms of the disease. While (s)he may not be able to think, communicate, or function normally, the person is still there and still has value, just because (s)he exists.

How to reach or touch this loved one in a way that enhances his/her well-being is a task that we must all learn. This is unchartered territory for most of us, including health care professionals, in some ways similar to the challenge of reaching children with autism.

A whole new set of skills might be warranted, that we’ve never thought of before, since words and actions may not always be appropriate in communicating or in understanding the person’s needs. We must learn this new “language,” taking clues from non-verbal behaviors, body language, facial expressions, etc. We might find that using music, touch or massage, aromas, art supplies, and movement are helpful in enhancing pleasure, releasing tension, and making connections. The use of photographs and memory boxes often help stir familiar memories.

Exercise helps to maintain physical strength and to reduce anxiety and tension. Connecting with nature, plants, pets, and using familiar religious prayers and rituals can often be soothing and comforting. Having family, friends, or paid caregivers who understand how to be present and care for your loved one in a calm and competent manner can provide enjoyment for the patient and time out for the family caregiver.

Most importantly, we must dramatically change our expectations for how to relate to someone we love who has dementia. While first ensuring that an appropriate diagnosis has been made by qualified physicians, that treatable and reversible causes of dementia have been ruled out, and that treatments available to help forestall progress of the disease as much as possible have been put in place, we must begin to adjust to the fact that life as we knew it has changed. The person, as we knew him/her has been profoundly altered, and, although this is the same person, we must relearn how to relate to him/her.

We have every right to grieve this loss with our whole heart and soul. It is truly grievous. We should get help, get support, and use whatever coping strategies help us. And then, when we can begin to put one foot in front of the other again, we must learn how to deal with what’s before us; learn what we need to know to care for this person whom we love and to care for ourselves. Following are some helpful suggestions for the journey:

*Accept what is and learn how to relate to who this person is now.

*Live in and relate to this person in the present moment. (That’s all any of us really has anyway.)

*Let go of your expectations and your need to be acknowledged by the person. Simply be present, without an agenda.

*Don’t feel hurt or insulted because of the person’s comments or behavior toward you. Remember that the disease is causing this change, not you.

*Learn about the disease itself, including what to expect, how to relate and communicate, and how to handle difficult behaviors.

*Create pleasant moments, perhaps drawing on some of the ideas mentioned above. It doesn’t matter whether or not the person remembers them. They’re still experienced at the moment and bring comfort and joy.

*Learn about resources that are available to help you and use them.

*Remember that you need care also, and that you must attend to taking care of yourself as much as you take care of your loved one. One person is not more important than the other.

Above all, remember that your loved one is still the same person, just a person with an illness. No matter how profoundly changed (s)he’s become, there is some level of awareness of your presence. Just being there for him/her is one of the greatest gifts you can offer, and the awareness that you’re able to be there, without expectations, will be one of your greatest rewards.

Funded by the Palliative & Supportive Care of Nantucket Foundation, the Palliative & Supportive Care Program is operated as a department of the Nantucket Cottage Hospital, which is an affiliate of Massachusetts General Hospital, and a member of Partners HealthCare. Palliative & Supportive Care of Nantucket is a specialized health care program dedicated to providing excellent physical, psychological, social, and spiritual care to persons with life-threatening illness and their families.

A Partnership in Caring

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