17
Caring for a Loved One with Dementia

I look into your face,

Your eyes stare into space,

I try to search deep into your soul,

To find the man I once knew,

But he is not there.

The emptiness goes beyond compare.

Where are you . . . ? I ask.

Where have you gone . . . ?

Carolyn A. Haynali, “The Empty Face,” Poetry from the Heart by an Alzheimer’s Caregiver, 2005

Her freckled face, strawberry blonde hair, and petite stature made me smile when I first saw her. Despite her middle age, she projected a youthful aura. She initially reminded me of a high-school cheerleader, until I saw the first glimpse of the pain she worked so hard to conceal, the heartache that was eclipsing the light from her eyes.

Margaret was forty-four years old and for the last five years had been the primary caregiver to her mother, who was slowly dying from Alzheimer’s disease. Initially, it wasn’t so bad. Mom could still do all the routine things such as bathe, toilet herself, dress herself, and prepare meals. In the beginning Margaret only supervised her medications and finances. At first she didn’t really notice much was wrong. There was the occasional forgotten conversation, misplaced item, and inability to recall a name, place, or date, but her mother always knew her and was glad to see her. But that was five years ago.

The neuronal grim reaper had taken many victims since then. Mom’s brain was now much smaller than it once had been. With each passing day, with each brain cell lost, a little more of Mom faded away until all that remained was a living, empty shell that little resembled the person her mom used to be.

Margaret’s mother could no longer dress herself, feed herself, or bathe or toilet herself. It had been several years since she had known the time, date, or where she was. It was only the rare occasion that Mother recognized Margaret, and more often than not she referred to her daughter as “mama.” Mom would frequently wander through the house at night, see people who didn’t exist, and accuse Margaret of being an intruder. Margaret couldn’t remember the last time she had a full night’s sleep, and she spent all day and most of every night caring for her parent. She was tired. But physical fatigue was not why she had come to see me.

Margaret had come to me because she felt torn, trapped, and consumed with guilt. Her mother had made her promise some years before that Margaret would never put her into a nursing home. This promise was made before either of them knew about the Alzheimer’s. Margaret had worked exhaustively to keep that promise but was wearing out. She physically could no longer keep up. She needed help and thought more frequently of placing her mother in a nursing home, but with every such thought she was pummeled with guilt: How could I just abandon my mother after all she did for me? A loving daughter wouldn’t do such a thing. You promised Mom you wouldn’t.

Margaret’s internal struggle is a common battle faced by those caring for a parent who is unable to care for themselves. Often people find themselves in a terrible bind between what their heart would prefer to do and what in reality they are capable of doing. For many, rather than choosing what is objectively best they instead push on with what they would prefer, until they exhaust themselves so severely that they collapse and can no longer function. Only then do they get the help they have needed for quite some time. This seems to be especially true when dealing with parents who are aging.

I asked Margaret, If her mother had a broken leg, would she try to set the bone herself or seek professional help? If her mother needed heart surgery, would she clear off the kitchen table and do it herself or get a heart surgeon? Because her mother’s decline was so gradual, so insidious, so slow, she never really stopped to define the objective medical criteria that would necessitate seeking external help. The question Margaret needed to answer was, Did her mother have a condition that objectively required assistance beyond that which Margaret could reasonably provide? In fact, would Margaret, by refusing to get such assistance, be placing her mother in greater danger?

The answer was obviously yes. Mother had wandered out of the house one night after Margaret fell into an exhausted sleep. Neighbors, several blocks away, called the police when Mom tried to get into their house screaming nonsense. Margaret realized that in order to fulfill her loving obligation to Mom, she needed to find assistance in caring for her.

At long last, Mom was placed in a very nice nursing facility that specialized in treating those with dementia. She was receiving more comprehensive care than Margaret could give, but Margaret didn’t significantly improve. She continued to be stressed, conflicted, torn, and guilt ridden. There was more troubling her than she had yet disclosed.

After gentle prodding she finally told me the dark secret that had been troubling her, the shameful thoughts that had been eating at her, the awful ideas that had stolen her peace. Margaret broke into tears and said, “For the last year I have wished my mother would just die. How horrible is that? How could I? What kind of a daughter would have thoughts wishing her mother would die?”

I sat quietly for a few moments, allowing the words she had spoken to sink in. Then I said, “Margaret, let’s say I had two buttons on the wall. If you push the button on the left your mother will be miraculously and instantly healed, restored to vitality, her mind and health fully recovered, and she will be as you had always known her. If you push the button on the right your mother will instantly die. Now, which button would you push?”

“The one on the left!” she said instantly.

“Margaret, you have never wanted your mother to die. You have only wanted her suffering to stop. You realize when she dies her suffering will be over. But you would restore her to health if you could. Isn’t that right?”

Margaret paused, eyes wide in contemplation, then sobbed as she nodded her head, overcome with relief. Margaret’s situation is representative of the struggles many people face and many more will soon face when caring for aging parents: the objective needs of their condition, which require time, money, energy, in addition to the subjective struggles of love, grief, guilt, frustration, and anger. One often is torn between competing responsibilities, those to one’s own children, grandchildren, and spouse versus those to aging parents. Should I keep Mother in the home, impacting my family, missing their events in order to care for a parent? What is the cost to the rest of the family? Should I put my parent in a long-term care facility? Is that right after all they have done for me? This is often the struggle.

There are many websites with helpful and practical advice as well as resources to assist in caring for a loved one with dementia. Following is a list of a few of them:

These sites are filled with practical guidance and are readily accessible; therefore, I am not going to reproduce all that information here. My goal in this section is to facilitate honesty, to help people acknowledge that these struggles are real and to bring them out in the open so they can be resolved. Only then can these real-life dilemmas be evaluated and addressed effectively.

We must also recognize that every situation is unique and what works best for one family might not be the best solution for another. I will describe several principles that guide our decisions, but the situation will determine the specific action that is best.

For instance, love—seeking to do what is best for the other—is a principle, but the situation determines what action love takes. Do you let your parent drive or do you take the keys? Love wants a parent to have as much autonomy as possible but at the same time wants to protect them from serious risk of injuring themselves or others. What determines whether the keys to the car are taken or not? The actual functional ability of the parent. When dealing with our aging parents, the principle of love leads us to seek what is best for them, but the situation will determine what action is actually needed.

Can you identify the principle at work in the famous adage “Love your neighbor as yourself”? I learned this principle when running an inpatient psychiatric unit. The first rule of a psychiatric unit is staff safety—not patient safety. Why? Because if the staff are not safe, then the patients are not safe and no care is provided. This principle is true for everyone who helps others. A farmer who won’t eat will not feed anyone. In order to be of use, to be capable of helping others, we must take actions necessary to safeguard, protect, and promote our own health. If we don’t, then instead of being in a position to help others we will need to be cared for by others. Even Jesus Christ regularly took time away from the needy masses to rest, eat, and spend time in prayer in order to rejuvenate himself for ministry to the people.

Caretakers need to establish the minimum objective requirements they must meet in order to maintain their own health, energy, and wellness, including mental well-being, so that they avoid exhaustion, burnout, and physical and mental breakdown. This would include such things as a healthy diet, routine exercise, and regular sleep but also time away from caregiving for mental decompression and rejuvenation. Failure to attend to one’s own health will result in wearing out; rather than being able to provide care to another, the caregiver breaks down and will need to be cared for by others.

With this in mind, let’s review some practical approaches to caring for an aging parent with Alzheimer’s disease.

Be sure your parent has a health-care provider who is familiar with the unique health problems of aging and specifically with dementia. This may entail having a primary care physician as well as a specialist such as a neurologist or psychiatrist to manage the dementia-related problems.

In conjunction with your loved one’s physician, set reasonable goals for your parent. These goals will change with time, but examples of reasonable goals for late-stage AD would be maintaining nightly sleep, good nutrition, avoiding hostility and anger outbursts, preventing wandering off, and stopping hallucinations.

Establish objective criteria that automatically trigger changes in care. For example, one reasonable goal would be to maintain regular sleep of seven to eight hours each night. A measurable criterion that would trigger a change in care would be a change in sleep. If your loved one is up wandering throughout the night unable to sleep, this should trigger a visit to the doctor, who will assess if something has changed in their underlying health—such as a urinary tract infection. If such a problem is identified and treated and sleep is stabilized, then care at home continues. However, if the inability to maintain regular nightly sleep despite medical intervention occurs, this would be an example of a measurable criterion that for some families would be the trigger to seek placement in a long-term care facility.

Establishing such criteria before they occur can make the process of executing the action (moving a loved one into long-term care) easier. It would be understood that this is based on the needs of the aging loved one. It’s not an unwillingness to provide care but an actual inability to provide the care needed.

Safety at Home

Many of the actions one needs to take when dealing with loved ones suffering with dementia are similar to dealing with small children—making the home safe. When the memory of a person with AD is impaired they may start activities and then get distracted and forget what they started, contributing to dangerous situations. For instance, a person might start cooking or ironing, and then the phone rings or a deer walks by a window and they walk over to look, and so on. But having left the stove or iron, they forget what they were doing and don’t turn it off, thus creating a potential fire hazard. When persons who are at home have this level of memory impairment it is important to protect them and everyone else from such dangers. One way to do this is to put the iron away where it cannot be accessed and turn the electrical breaker or gas off to the stove or range so it cannot be turned on. Matches, lighters, and other fire starters should be removed, guns should be locked away, and medicines should be placed in locked and secured containers. Medications should not only be locked up but also be dispensed by a third party as people with dementia often either forget to take their meds or forget they have already taken them and take multiple doses.

Other actions to promote safety include changing out shoes with shoelaces for ones with Velcro straps. These are not only easier for the aging person to manage on their own but also reduce tripping and falling risks. Ensure that shoes are worn most of the time, even indoors, to reduce risk of foot injury. Circulation is often compromised in the elderly and frequently there is neuropathy, the loss of temperature and pain sensation, which means an elderly person can injure their foot and not know it. If this happens infection can set in and cause serious problems, especially in diabetics.

If your loved one has a real risk of getting up and wandering at night, consider a bed alarm, which will sound should they get out of bed. This can allow you to sleep without worrying about whether your loved one is still in bed.

Guardianship versus Power of Attorney

I am not an attorney and am not giving legal advice, but I am pointing out some circumstances that call for legal counsel. One of these is determining legal authority—power of attorney or guardianship. The difference between guardianship and power of attorney (POA) is that POA is granted by a person who is competent and who authorizes another person to act for them in legal matters. In this case, it would be granted by the parent to the child. Granting power of attorney to someone else does not remove the ability of the person who granted the POA to act on their own behalf. Further, POA can be rescinded by the one granting it at any time. This means if your parent has granted you POA you have legal authorization to act for them in any matter for which the power was granted you (sometimes the POA is limited to specific actions such as medical decision-making; other times it is a general POA). However, your parent can still legally take actions for themselves.

Guardianship, on the other hand, is granted by a court and is given when a person is no longer capable of acting in their own behalf. Guardianship removes the legal right of a person to act in their own behalf in legal matters, which means your parent cannot sell their house, open a credit card, buy a car, write checks, donate money, and so on without the authorization of the guardian. This is an important distinction to understand, as there are less-than-honorable people in our society who prey upon the elderly. Obtaining guardianship, when it is appropriate, is one way to protect our parents from such exploitation.

Avoid Arguing

When dealing with a parent who is no longer reasoning at their previous level, who forgets, who may draw erroneous conclusions, who may even misidentify loved ones and believe they are in a different time and place, it is important not to argue with them or seek to make them admit they are wrong. It is also important not to get your feelings hurt or take accusations personally. Arguing and demanding your parent admit he or she is wrong will only cause agitation and hostility and will not result in learning. Remember, your parent has lost the brain matter necessary to learn and remember so arguing with them is pointless.

As individuals dement, their capacity to assimilate and process new information is strained, and life can become overwhelming and stressful. Such things as meeting new people, navigating the parking lot, processing the sights and noises from people in a store can be frightening and distressful. Commonly, as people begin to lose cognitive abilities, they will choose to isolate and stay at home where things are routine and familiar. If this happens do not force your parent to attend activities that are stressful to them; instead, consider ways to minimize the amount of mental tracking and strain that will be placed on them. In this way the activities will be less stressful and they will be more likely to engage.

Because a person who is deteriorating has impaired ability to assimilate and learn new information, including new surroundings, if your loved one has to be moved to a long-term care facility do everything possible to make their new abode feel homey and familiar. Bring pictures, furniture, blankets, beds, towels, and anything that can be reasonably incorporated into the new facility with them. This reduces their feeling of strangeness and brings comfort, reducing agitation and acting out.

Finally, don’t go it alone. If you have supportive family, reach out and get help. If you don’t have family, then reach out to your church, neighbors, or local Alzheimer’s Association. Connecting with others provides encouragement, understanding, and real help in carrying out the caregiving responsibilities.

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As long as we are living, we cannot avoid growing older—the only question is how do we want our passages through time to unfold? I hope this book has inspired you not only to live long but also to live well and to incorporate into your life these various evidenced-based practices, which not only promote health but actually slow decline, preserve function, and prevent dementia.

LEARNING POINTS

  1. Caring for an aging parent is a time of great emotional anguish filled with conflicting feelings and additional responsibilities.
  2. In order to be able to provide care to another we must be vigilant to maintain our own health. This requires thoughtful establishment of those things necessary for our own self-care.
  3. Ensure your parent is under the care of a physician familiar with the problems of the elderly and those with dementia.
  4. Establish, in conjunction with the physician, a reasonable list of goals.
  5. Take specific actions, as necessary, to make the home safe.
  6. Establish measurable criteria that will automatically trigger a change in care.
  7. If you must move your loved one to a new living situation, bring as many of their personal belongings as possible to make the new place familiar to them.
  8. Determine and establish the best legal status for your situation—power of attorney or guardianship.
  9. Don’t argue when your parent doesn’t remember things.
  10. Don’t take accusations personally.
  11. Don’t go it alone—get help.