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In the early stages of their disease, people who have dementia usually realize something is horribly wrong. They become understandably anxious and afraid of the future. Children who need to put their parents in care need these 5 coping strategies.

Self-awareness is often keen in the early stages of dementia. People with dementia recognize that they can't remember quite as well as they used to, or that they make errors in judgment, or they see and hear things that can't possibly be there. The people who care for people who have dementia reach a point they don't see a choice that allows their loved one to continue to live independently. There is a point that help is clearly needed.

But often help is refused. What do you do then? Here are five suggestions.

Try to put yourself in your loved one's shoes

The actress Bette Davis famously said, "Old age ain't for sissies." There are many changes that make living harder. Your joints may ache. You may have one or two or three or more medical conditions that require daily management. You don't have the income opportunities you once did, and if you didn't plan your finances well, you have constant financial stress. And if you are aware that you are developing dementia, you may understandably feel that you are losing everything.

When you discuss placing a parent in long-term care, it's important to be clear about facts. That means that everyone in the family needs to be on the same page when discussing these matters with the parent. It may be necessary to insulate the parent from the influences of peers and extended family members who would discourage the placement. 

On the other hand, it's also important to be compassionate. You may not be able to avoid nursing care, but you may be able to make the option more acceptable. If your parent isn't already familiar with a new caregiver, make sure there are introductions before their first day on the job. If your parent has to live in a nursing facility, make sure they know some details about it before they go. Exercise empathy. Your good attitude isn't a magic wand, but it helps relieve the huge tensions that come with facing end of life.

Ask questions before you take action

People who have dementia sometimes are more "with it" than you realize. Sometimes they may already have their own ideas about the in-home help they need or the nursing facility where they would like to live. Before announcing your plan, ask open-ended questions  about the kinds of care they think they need. If their self-assessment is ill-considered, completely wrong, or delusional, don't get in a rush to correct them. Ask more questions. Listen to more answers. This procedure doesn't always help, but it is another way to reduce anxiety, agitation, and aggression when your loved one is placed in care.

Be patient during the transition to care

You may need to spend extra time with a parent the first few days they have a new caregiver or they go into a nursing home. Avoid overstimulation. It's fine for a new patient to meet a roommate or a next-door neighbor or to chat with an old friend who happens to be in the same home. But nobody with dementia needs to meet everyone in the facility the first day. 

It also helps to minimize noise and to optimize possessions from home. For photos, consider making a photo board of duplicate photos so the originals won't be destroyed by your parent or by someone else in the home. Write down the locations where important mementos and keepsakes are kept so they can be found if your loved one forgets where they are.

Give your loved ones options whenever possible

Allow your loved one all the independence they can handle. Give choices whenever you can. That can apply to furnishings, clothing, visitors, photographs, and food. They may realize that their independence is illusory, but still appreciate the choices they can make. Avoid situations in which every minute of every day is scheduled by staff, and avoid letting your parent feel rushed. What you lose in waiting time you gain in freedom from agitation.

Take it slow

It is not unusual for an adult child to have "done everything" for a parent and then run into problems of their own. Maybe the child's health is failing. Maybe children need time that has been invested in elder care. Maybe the child is just burning out. 

It's important to realize that your need for your own life is legitimate. But if you have dedicated yourself to taking care of an elder and now you are getting help, it is critical to acclimate your parent to letting other people do things for them.

Intensely personal tasks like using the toilet, changing diapers, and bathing are often areas of service into which children should not venture. If parents are modest about these tasks, it is probably better to use "hired help" from the beginning. For other tasks, just make sure that you don't make your parents feel like an imposition, and do your service to them at their pace, not yours.

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  • Photo courtesy of SteadyHealth

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