THE WHOLE PERSON CONCEPT AND LIVING WELL WITH CHRONIC ILLNESS
WHOLE PERSON CONCEPT
It sounds like a simple idea “the whole person concept “and it is. But it’s one that medical disciplines are slow to adopt. Most of the time you hear the concept used as an assist in getting to a high level of wellness. How does this youthful lingo apply to a chronic illness like Alzheimer’s disease/dementia?
If you examine all the areas of the whole person (mental, physical, emotional, social, and spiritual) and try to preserve the strengths in them, then your person with Alzheimer’s disease/dementia can often be “well” even with a chronic disease. “Wellness” is more than the absence of illness. It is a general sense of well-being and can be felt by a chronically ill person, most especially in the absence of acute symptoms and pain. A “well” person with Alzheimer’s disease/dementia is easier to care for than one with complications. It is true that the person with Alzheimer’s disease/dementia will gradually deteriorate no matter what you do; but the process can be slowed in some cases, allowing you more quality time with your person.
Generally, all skills are lost in the order in which they were gained. It is like reverse growth and development. An adult with Alzheimer’s disease gradually becomes a teenager and then regresses through childhood into infancy. The skills one has had the longest are the last to go. Most caregivers sense the childlike dilemmas when their person with Alzheimer’s disease/dementia can no longer dress him/herself (independent dressing is usually learned at 2-5 yrs. of age). This concept helps to explain the gradual decline and childlike behavior. If given time and no other diseases interfere, a person will progress to infantile behavior and even assume a fetal posture. At this juncture your person would have to be fed artificially through a tube in his or her nose or stomach. This theory of retrogenesis– reverse development can help caregivers understand the problems they face and some of the appropriate strategies to use to manage behavior. One of the largest dilemmas is how to use strategies that one might use on a child but at the same time preserve his/her dignity. You can overcome this problem by using basic encouragement and support that helps to work with the strengths and skills that each person has until their strengths and skills are lost.
A person in the middle period of Alzheimer’s will often have strengths in each of whole person areas—strengths that you can work with. This does not have to become a total devotion, but some thought and planning can make your life easier. The following paragraphs will talk about strengths and weaknesses in each area and hopefully give you something to think about.
We all know that a person with Alzheimer’s disease/dementia has many losses in this area. The person with Alzheimer’s disease/dementia has a lot of short-term memory loss, but often can remember the distant past. During the middle madness period your person can often obey certain one-step requests but cannot usually “think” him/herself out of problems. The person with Alzheimer’s disease needs to be watched carefully, but it is good to let him/her be busy for periods during the day. Give your person one-step commands to do small chores/activities that make him/her feel useful (there are a lot of suggestions in the main problem solving section of this book). As the disease progresses your person will be able to do fewer and fewer chores/activities and for shorter periods of time. It is worth continuing to encourage him/her in the highest level of function until your frustrations draw some natural lines.
In this area, losses often appear in the later stages of the disease as your person with Alzheimer’s disease/dementia begins to loose the ability to walk, talk, and eat. Until that time you often have a fairly spry person on your hands who has little or no common sense. There is no harm in encouraging walking. It can be a soothing activity for persons with Alzheimer’s disease/dementia (possibly stimulating endorphins or natural painkillers). Escorted walks are best, but keep an eye on your person even in a locked yard. Adult daycare centers can be a good source of supervised walks and mild exercise.
A word should be said here for encouraging good nutrition. You don’t have to go on hyper-nutritional vitamin diet to get health gains. Since people with Alzheimer’s disease usually cannot cook for themselves, you have a big say over what they are offered to eat. Getting your person with Alzheimer’s disease/dementia to eat at all can be a battle royal, but a simple moderate-to-low fat diet with fiber can slow weight loss and help alleviate constipation and chronic bowel problems (sweetened oatmeal can be a miracle food). Pay attention to your person’s natural hunger cycles. Some like eating breakfast and have dwindling appetites as night falls. Take advantage of these patterns to encourage consumption of more wholesome calories. Remember this is not a cure so don’t create manias for yourself. Check with your doctor or nutritionist for diet regimes for specific illnesses.
Alzheimer’s disease/dementia can create mood changes and emotions that don’t match the circumstances. The person with Alzheimer’s disease can laugh when he/she should be sad and vice versa. One cannot predict when this will happen. The person with Alzheimer’s disease/dementia can get into some intense short-term anxieties and agitation, but memory loss can sometimes prevent a person with Alzheimer’s disease/dementia from consistently remembering chronic worries. This in turn can sometimes alleviate flare-ups of emotionally related diseases such as ulcers. Remember that you are not always the cause of his/her emotional upsets. S/he can make up the death of a friend or relative and cry over it without any thought or understanding of the truth. S/he will fill in the blanks of their lives with new stories often believable to outsiders. People in general find it very hard to live with blanks in their lives. Filling in the blanks is a natural process that is greatly exaggerated in Alzheimer’s disease/dementia. This process is called confabulation (making up stories to explain lost memories) and it can be quite entertaining and/or enraging depending on your mental health and attitude at the time.
Depending on how social a person with Alzheimer’s disease/dementia is, his/her basic social skills can stay intact for quite a long time. The key here is stimulation. If s/he has no one to talk or listen to s/he can become disinterested and uncommunicative. In truth it is not always easy or enjoyable to converse with a person with Alzheimer’s disease/dementia, but s/he will often settle for light chitchat. Here again, daycare can be a valuable resource. Daycare assistants often enjoy the challenge of talking to persons with dementia (these assistants can escape at the end of the day). A day at the center can satisfy a person with Alzheimer’s disease/dementia’s need for socialization with peers and take the pressure off you as a caregiver.
This is indeed a challenging and often overlooked area that does not have to be limited to organized religion. A person with Alzheimer’s disease/dementia has spiritual depths as all people do and may grow closer to the divine as s/he becomes less attached to the reality defined in this world. If your person’s communication skills are still intact, s/he can discuss thoughts and feelings about his/her spiritual beliefs. Discussion can help a demented person through the natural stages of mourning over chronic illness and death to create a bit of peace in his/her soul before all communication is lost and the intense march toward death begins. Conflicted feelings and lack of peace can prolong the death process. Encourage your person with Alzheimer’s disease/dementia to engage his/her spiritual belief as a resource. You may need to find a cooperative minister, priest, or spiritual director who would like the challenge of communicating with a person with dementia. Do not be put off by the loss of memory; effects can be created in the moment that may add to your person’s inner peace in ways no outsider will ever know. Spiritual feeling can continue even after communication is marred. Church, spiritual rituals and prayers can sometimes be helpful in sustaining these feelings. For others, ritual is meaningless and a simple expression of feelings by someone who cares can be enough. Verbal and non-verbal communication of love is a powerful tool.