Ten Things (besides Memory) Alzheimer's Steals from Its Victims
First Known Alzheimer's Patient
My mother, an Alzheimer’s victim, receives visits from someone who is repeatedly offended by her backchats. The visitor thinks that my mother’s rudeness is inconsistent with her seventy years of church membership, which should have made her into a sweet, gentle soul by now.
It does not help to blame my mother, neither to blame her accuser; the one lacks the capability to reason, the other lacks the facts.
My total knowledge of Alzheimer’s before it entered my household was that it steals the memory of its victims. Many other individuals know just as little. Now, after years of close encounter with the disease, plus efforts to learn more about it, many other personal losses to the victim have become obvious.
This list of ten losses is by no means all-inclusive.
Alzheimer's disease leads to nerve cell death and tissue loss throughout the brain. Over time, the brain shrinks dramatically, affecting nearly all its functions.— Alz.org
It is certain that when my mother was capable of exercising caution, she withheld thoughts like those which she now puts into offensive words. However, when Alzheimer’s begins to talk it has no regard for caution. Carol O’Dell warns on Caring.com that the rude remarks may be easier to handle than the silence which the caregiver will face when the Alzheimer’s patient no longer communicates.
The American Alzheimer’s Association offers the expert opinion that depression plagues 40% of Alzheimer’s victims. Sad, hopeless, discouraged or tearful are the usual descriptions of their mood. They withdraw into social isolation; and suggestions to cheer up are usually not helpful. Caregiver or group support may help some; others may require professional services.
Alzheimer’s patients are confused about where they are. They want to go home, even when they’re at home. They may interpret a noise, or the presence of a stranger as an effort to hurt them. They search around them for objects like purses, walking canes, and even pets which they think were in their possession a minute ago (but weren’t). Psychosis may account for voices they hear in the next room or outdoors, and sometimes in their confusion they wander off.
My mother maintained a home which was beautiful as well as clean, and so was she. Now, Alzheimer’s has stolen her sense of cleanliness. Her confusion results in struggles between us to have her shower and change her clothes. We no longer talk about flushing the toilet.
Hearing a caregiver in a home for the elderly shouting to a ninety-year old woman that she was nasty, it became obvious that even some caregivers still have much to learn. Respect for the patient cancels disgust for the situation which Alzheimer's creates.
There are many issues which can create a feeling of discomfort in Alzheimer’s patients. Among them are:
- Unfamiliarity with the surroundings;
- Voices they alone can hear;
- Fear of the dark;
- Nighttime wakefulness;
- Dry mouth caused by some medications;
- Other physical discomfort which they are not always able to explain.
Easing the discomfort requires that caregivers pay attention and make necessary changes to accommodate the changing needs of the patient.
Recently, my daughter came to visit. Some days she and my mother connected, but one day my mother asked her name and promised to remember it since it was the name of someone in her family. There are also days when she addresses me as “Miss.” The disconnection is more than a memory problem. When patients do not connect, they refuse to trust and they reject company.
According to the Alzheimer's Association, one third (33%) of the people with dementia said they lost friends following a diagnosis.
We expect that sense of right and wrong will improve in children as they grow older. In Alzheimer’s patients, that sense is on the decline. Sometimes they understand what they are doing; sometimes they do not.
Biblical Medical Ethics, edited by Ed Payne, M.D. counsels: “If he [the patient] has no consciousness of his actions because of his disease, then his conscience is not ‘active’ and he should not be held accountable for his actions.” The article further suggests that it is better for caregivers to err on the side of greater rather than insufficient understanding.
Alzheimer’s steals the control gradually but continually. Patients are forced to give up responsibilities of driving, shopping, managing finances and maintaining the home. Activities of daily living (ADL) such as bathing, grooming and dressing become difficult then impossible. They eventually revert to the childish dependence on assistance with feeding and toileting.
When patients lose control of their expertise, they also lose their sense of worth. Caregivers have the additional task of helping them feel loved and valuable.
From the Patient's Perspective
"Do not lose your patience with me,
Do not scold or curse or cry.
I can’t help the way I’m acting,
Can’t be different though I try."
See the whole poem written by Owen Darnel
Verbal communication becomes almost impossible when patients lose the capability of expressing themselves accurately. Plus, they very often misunderstand what the other person is trying to communicate. For example, my mother will respond to a request like “Can you please take your cane off the table?” with an angry defense that the cane is hers. She might continue for the next five minutes, listing other things that belong to her which other people are using.
Still, it does not feel right to avoid conversation altogether. Caregivers will learn to pay more attention to the emotions behind the words than to the words themselves. For example, when my mother gets angry about other people using her belongings, she may be asking for assurance that her possessions are safe and that she will have them when she needs them for her personal use.
It is easy to think that my mother tells lies, but that was not characteristic of her before Alzheimer’s. She has told several different stories about who stole her money, her clothes and her dishes. Some of the stories were so convincing that there seemed no reason to doubt their authenticity. It became obvious to me that her credibility was gone when she began to accuse me wrongfully.
For everyone of these losses to the Alzheimer's victims, there are also losses to the relatives and caregivers. It is like watching a robber in slow motion stealing our stuff. Let it not steal our love.