Home > Alzheimer's Disease, Dementia & Brain Health > Caring Gracefully for Family Members With Dementia

Caring Gracefully for Family Members With Dementia

A few nights ago, while tossing and turning in bed, too restless to quiet my mind and fall asleep, my husband stirred beside me. I told him I couldn’t sleep. His answer? “Why don’t you get up and go in the other room?” When I lamented that I was hoping he would comfort me, he rephrased his advice as such, “Why don’t you get up and go in the other room, sweetie?” Grrr, what a jerk I thought, but said nothing and turned over. Then I think of my elderly mother, the way she mixes everything up, and doesn’t believe me when I tell her something. I consider myself a patient person, especially with children (because they haven’t yet learned better) and the elderly, but when it comes to family members, I’m not so sure. Often times, many of us seem to reserve a large part our saintly patience and courteous behavior for total strangers.

How would you rate yourself?
On a scale of 1-10 (10 being saintly), how patient are you?
Do you extend the same grace, mercy, and forgiveness to your own family as you do to strangers and co-workers?
Are you more patient with children or the elderly?

If your honest answers to these questions touch a nerve, it may indicate that you are not a good candidate for becoming the sole caregiver of your elderly parents, particularly when the signs of dementia begin to appear. Of course, most of us feel justifiably responsible for helping our elderly parents and treating all of our loved ones with the same patience and respect we afford strangers, and when we struggle with doing so, most of us make an effort to improve. In trying to understand the phenomena, maybe we grow too accustomed to the unconditional love family members provide. We come to depend on their support, understanding, insight and guidance on everything from inconsequential day-to-day events, to important topics such as safety or a family crisis. When our family members don’t come through in a way we expect, albeit from the sleepy stupor such as was with my husband, or the devastating, gradual loss of cognitive skills in the case of my mother, we feel hurt and disappointed. We are insulated from hurt inflected by strangers because we lack a heightened level of intimacy with them.

Understanding the intrinsic layers of decline that accompanies dementia and its effect on a human being may provide us with the knowledge to help us deal with it  our elderly family members more gracefully. The Alzheimer’s Association regularly distributes articles that provide insight for helping family members and outside caregivers deal with those affected by the disease. A recent one, published in the Huffington Post, says, “It is so easy to think that there is no one there anymore when the person in front of you does not talk, or when they make unintelligible sounds, or say things that don’t seem to make sense, or don’t remember what happens from one minute to the next.” Although it may be a normal reaction, talking as if the person is not there or addressing them as you would a child and assuming that your interactions with them do not matter, can create an even more frustrating situation.
The article offered eight truths to help change the way we relate to persons with Alzheimer’s or other dementias.
The fact that the person doesn’t speak does not mean that they do not hear or understand.

No matter how withdrawn or unresponsive aperson may appear, one should act and speak as if they were completely cognizant. This precludes talking about the person in front of them, or ignoring their presence, or using language that is disrespectful. The person should be treated as we want to be treated, only using simpler language and talking more slowly so as to maximize the chances of being understood. Not recalling facts does not mean that the heart does not know or does not remember. To the contrary, persons with forgetfulness are extremely attuned to the quality of their relationships, and carry with them the emotional imprint of prior interactions, whether positive or negative. A parent may not remember that you called them earlier, but the positive effect of the phone conversation could linger for hours afterwards. The loss of abilities, no matter how severe, does not mean that all abilities are lost. Research shows that the following abilities remain, even into advanced stages of dementia: experiencing pride, maintaining dignity, experiencing shame and embarrassment, feeling concern for others, communicating feelings with assistance, maintaining self-esteem and manifesting spiritual awareness. What appears as nonsensical behavior actually makes a lot of sense from the person’s perspective.

Making sounds can be a desperate way of soothing oneself in the face of extreme alienation. Pacing is a way to channel one’s anxiety or boredom. Wandering can be viewed as a search for something missing, like one’s old home, or a lost sense of connection. Crying out is a plea for help. Aggressive gestures are expression of anger from one’s needs not being met adequately, or from one’s frustrations with the many losses attached with the Alzheimer’s or dementia experience. These behaviors are attempts to cope with very real distress. The person is not a child or a baby, although some of their behaviors may cause us to treat them that way.
The person may need assistance with basic activities such as eating, getting dressed, taking a shower and grooming, or they may engage in pre-verbal modes of communication –  behaviors that we normally associate with very young children. But they are not children. They are adults, with years of experience and accumulated wisdom, much of it stored in their heart and spirit. No matter how well intentioned, infantilizing the person will only cause them to feel worse.

It is not all downhill from here, at least not always. The journey through dementia is nonlinear with some remarkable breakthroughs here and there, often precipitated by the right context. Stories abound of persons who start speaking or smiling again after they are moved to a different environment, one where they feel safe, engaged and loved. The fact that a person struggles with initiating tasks does not mean that they are incapable of making any decisions. When in doubt, err on the side of exploring the person’s range of abilities. Preserving the ability to make choices, no matter how small, is especially crucial. Many times  partners or caregivers take over all aspects of a person’s life, unwillingly depriving that person from the opportunity to make even such a simple decision such as which clothes to wear. Which dress, the blue or the red one? All of us want to feel that we are still in control somehow. Asking “what to do” with the person can be the wrong question. We are part of a “doing” culture. Sometimes, all that is required of us is simply to “be” with a person, as in sharing moments sitting, walking, listening to music, watching a sunset or gently touching the person’s hand after we have asked for their permission. The more we understand, the easier it will be on the caregiver and the person in our care, whether we are caregivers of a family member or a stranger.

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About The Author: Gloria Ha’o Schneider is an expert in senior citizen and baby boomer issues. Her topics revolve around Senior Living and Healthcare to provide the latest information to this demographic as well as their families and loved ones.

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