Loss of identity with Alzheimer's hard to bear

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How is your mom doing?” I asked a friend of mine recently.

“Well, physically she’s actually pretty good. Mentally, though, she’s slowly leaving us. It’s tough.”

My mother was just the opposite—mentally sharp, but physically unable to walk or care for herself. I don’t know what is worse if you are the elderly person, or the caregiver.

My friend went on to say, “Yesterday, she kept calling me her sister’s name. I tried to correct her, but finally gave up. I get so frustrated, yet I know she can’t help it.”

“How do you cope?” I asked.

“Thankfully, I have a brother and sister I can talk to. We try to keep the good memories alive and not take offense when she doesn’t recognize us.”

When the dementia— or Alzheimer’s-afflicted parent — presents a defiant or abusive side, it is especially challenging. I remember having my aunt and uncle visit years ago. Her memory had been gradually failing from the age of 50. In the middle of the night, we heard a commotion in the backyard. As we listened, we could hear my Uncle Al trying to coax Aunt Tommy back into the house. She loudly refused, and he patiently urged her to keep her voice down. This went on for 15 minutes with her yelling at him to keep his hands off her. She finally came back in.

I can only imagine the conflicting emotions that come with these scenarios. Grief and sadness at the loss of a relationship, frustration over their lack of cooperation, anger at their loss of memory and lack of appreciation for everything you do for them — not to mention the physical toll on you from lack of sleep or trying to carry on your household while taking care of your parent. There can also be feelings of guilt, isolation and depression.

Symptoms of depression might include feelings of worthlessness, guilt, hopelessness. Sleep disturbances, becoming easily frustrated or agitated, fatigue, difficulty with concentration, loss of pleasure in everyday activities, changes in weight or appetite, and thoughts of dying or suicide are all signs of depression. You also might have other physical symptoms that you haven’t found an explanation for, such as, headaches, digestive disorders or pain.

These are not symptoms to be ignored. Make an appointment with your physician if any of the symptoms persist. Don’t try to be the hero or heroine. As the airlines always direct, put your oxygen mask on first, then you can take care of your family member.

As far as taking care of your parent, keep the following in mind:

Physical exercise, proper nutrition, good general health, and socialization are important for people with Alzheimer’s disease.

Plan daily activities to help provide structure, meaning and a sense of accomplishment for the person with Alzheimer’s. It is always best to establish a routine with which the person can become familiar.

Choose the best times to do activities according to the part of the day when the person is usually at his/her best.

As functions are lost, adapt activities and routines to allow the person with Alzheimer’s to participate as much as possible.

Keep activities familiar and satisfying, and keep instructions simple.

Allow the person with Alzheimer’s to complete as many things as possible by him/herself, even if you have to initiate the activity.

Provide “cues” for desired behavior. For example, if you label a drawer according to what it should contain, the person is more likely to put things in the correct place.

Keep the individual with Alzheimer’s out of harm’s way by removing things that could endanger him or her. For example, hide the car keys and matches. Also try to keep the environment safe. Remember: What appears safe to you may not be safe for a person with Alzheimer’s.

As a caregiver, it is important to understand and act according to your own physical and emotional limitations. Be sure to take care of yourself, and allow yourself periods of rest and relaxation.

If you need information about early-stage caregiving, middle-stage caregiving, or late-stage caregiving, go to the Alzheimer’s Association website at http://www.alz.org/care/overview.asp.

Sources: 2011 WebMD, National Institute on Aging: “Caring for a Person with Alzheimer’s Disease.”

Alzheimer’s Association: “Caring for Alzheimer’s,” “Daily Care.”

Patty Knittel is employed at Walla Walla University’s School of Nursing. An only child, she was caregiver for her aging parents, and writes about caregiving and other aging-related topics. She and her husband, Monty, live in Walla Walla. Email her at knittelpa@gmail.com.

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