Advice From One Caregiver to Another

Dealing with dementia-related care takes knowledge and patience

Over 30 years ago, I started working with families and professional caregivers of people dealing with Alzheimer’s disease and dementia, as the executive director of an Alzheimer’s Association chapter. Over the years, I’ve talked with thousands of people personally dealing with dementia. In 2010, my mother-in-law was diagnosed with Alzheimer’s disease and I then tried to incorporate what I had learned throughout all these years into my own caregiving strategies. Here is some advice I gleaned and offer now to help others dealing with dementia in their personal lives.

Learn as much as you can about your loved one’s disease. There is a wealth of information available today online, in the public library, and at local educational sessions. Misunderstanding about dementia still exists, so utilize reputable websites and don’t rely on anecdotes from neighbors or friends.

Caring for someone with significant memory impairment can be very difficult. In some cases caring for a loved one with dementia is impossible for just one person. Force yourself to reach out for help and support (see the February 2018 article in Warrenton Lifestyle on caring for yourself.)

If you lose your patience, give yourself a break. Tomorrow is another day. Try to do better next time, but push guilt to the back burner – you’re doing the best you can and you can’t expect perfection. Give yourself a pat on the back for taking on this difficult journey, because not everyone would.

Choose your battles. As the disease progresses, even the smallest task may become a challenge. Your relative may balk or even resist with force at dressing, grooming, bathing, eating, and other activities of daily living. One spouse told me, “There are no ‘pajama police’.” If George refused to change into street clothes, I let him stay in his PJs until lunch and then tried again. As caregivers we need to change our expectations of what is acceptable.”

We need to step into their world; they can’t comprehend ours any more. Even with all my experience, this was a tough one for me to put into practice with my mother-in-law. I had known her for over 30 years when she became confused, forgetful, and belligerent. I experienced difficulty reconciling the differences.

We can’t “convince” a person with dementia of anything, nor can we “teach” them. They typically don’t “lie”. What we perceive as an untruth is usually what they believe to be true.

Don’t take things personally. When your mother accuses you angrily of stealing her purse, it’s useless to argue – it’s unlikely you’ll win. A good response might be, “I think I saw your purse in the kitchen, let’s go look for it.” You can also use a technique called redirection. Change the subject or the location; this takes advantage of your loved one’s short-term memory loss, and he or she may forget the accusation.

Establish a routine. People with dementia are more comfortable with a daily schedule. Whenever possible try to complete the same tasks at the same time each day. But, expect some difficulty when the agenda is disrupted, such as going to a doctor’s appointment.

Offer choices. Instead of asking your loved one: “What would you like for breakfast?” Ask, “Would you like eggs or waffles this morning?” As the disease progresses, present the person with food you select and say: “Time for breakfast.”

Give one “command” at a time. Break your conversation into phrases. Rather than saying: “Put on your pants.” Simply say: “Sit on the bed.” Then provide guidance on the next step, such as saying “put the pants on.”

Each individual with dementia is different, but these are general principles that work most of the time. When it comes to caring for someone with memory impairment knowledge and patience are power.

 

The Ten Absolutes:

Don’t argue, agree.

Don’t reason, divert.

Don’t shame, distract.

Don’t lecture, reassure.

Don’t command; ask or model.

Don’t condescend, encourage or praise.

Don’t force, reinforce.

Don’t say “remember?”, instead, reminisce.

Don’t say, “I told you”, instead, repeat.

Don’t say, “You can’t”, instead, say, “Do what you can”.

Excerpt from the book Alzheimer’s Disease: Help and Hope by Jo McDonnell Huey, copyright 2001, second edition, 2008; published by Alzheimer’s Institute, page 113.

 

Carol Simpson
About Carol Simpson 8 Articles
Carol Simpson is a graduate of Georgetown University. She was executive director of the Alzheimer’s Association of Greater Washington, trainer at Home Instead Senior Care, and development manager at the Alzheimer’s Association of Central/Western Virginia before becoming executive director of Aging Together.

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