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Who cares for the caregiver?

The mind is a precious gift. Imagine losing it. Our memories shape who we are. The ability to remember, think and reason is paramount in negotiating our environment. Alzheimer disease is unique in that every affected person reacts differently, and symptoms of the disease vary greatly. While some people may become quite anxious, others may become complacent or apathetic. Some individuals have problems expressing themselves, yet others have difficulty with comprehension. While some people recognize friends and families late in the disease, others forget faces relatively early. No matter how the disease manifests itself, the impact is always devastating for the affected individuals and their caregivers.

Not only does the disease present differently in each case, the time spent in each stage varies widely. Thus the caregivers uncertainty and fear of the future is compounded by the unpredictability of the rate of progression. Not knowing what to expect next has been described as one of the most frustrating aspects of the disease. Good days hold promise that the disease is not progressing and bad days bring fear that person is slipping away. The best way to avoid the emotional roller coaster of alternating hope and despair is to make the best of good days. Capitalize on the individual's remaining skills and abilities. No matter how advanced the individual may be, some vestiges of that person are still there and should be encouraged to their fullest potential. See the links below for further information.

As a caregiver, it is essential to get as much information about the disease as possible, to talk about your situation and have plenty of rest. Support groups can be a lifeline for caregivers. Not only can you vent with other people in the same situation, you may come away with practical solutions that have worked for others. It is important to take short breaks often, and longer breaks when you can. Consider Adult Day Care to give yourself a break and keep your relative stimulated. Don't hesitate to ask other family members to take over for a while so that you can go for walk, go to the gym, or simply have some time off   

You can also call your local CLSC(CSSS) to obtain a social worker who can give you information on Adult day care options.

In time, Alzheimer individuals become totally dependant on others for their daily survival. As the disease progresses, it wreaks havoc on the individual's ability to reason, make decisions, perform simple tasks and take care of themselves. As the brain deteriorates, so does the ability to control bodily parts and functions.

By the time late stage Alzheimer's develops, many individuals have difficulty talking, swallowing, and moving around. Eating become an issue of concern for people with swallowing problems due to the risk of choking. Pureed and mashed foods are helpful as well as thickeners for liquids. Serving food in a cup or a bowl with a spoon may make it easier for a person in the later stage of Alzheimer's to eat autonomously.

Ambulatory problems occur as the disease progresses and the risk of falling increases. Many people in the later stage of the disease shuffle their feet and can trip quite easily. If you have area rugs in your home, be sure to tape them down. Keep a clear path for the person to walk. You can reduce the risk of falling by removing any clutter in the home, and by avoiding high gloss or patterned tiled floor. Avoid low furniture which can create difficulties for a person trying to stand up from a seated position. An assessment with an occupational therapist, available through the CLSC, can help to determinate whether your relative is a candidate for a cane or a walker.

Caring for a dependant adult requires constant diligence. People in the late stage of Alzheimer disease require constant supervision, 24 hours a day, and one person cannot handle this alone. The physical and emotional demands of caregiving can be as insidious for the caregiver as the disease itself.  The love, guilt, sadness and obligation to care for a family member who is ill can be over-whelming. Carers are often so consumed with worry and grief that they fail to realize the value of their own health and often fall victim to a variety of illnesses as e result of stress ans exhaustion. In fact, there have been cases where the caregiver succumbs before the Alzheimer person. And who will care for your family member if you become ill? Taking care of a dependant adult is much more demanding than caring for a child, and seeing someone you care about deteriorate before your eyes can be devastating, but you will be of no use to your family member if you do not take care of yourself.

By the time late stage Alzheimer's develops, affected people generally are no longer aware of their situation, although they may have the occasional moment of lucidity. Their earlier stage anxiety usually dissipates by the late stage. It is the family members who suffer most. Alzheimer disease is often called a family illness because of the chronic stress on the entire family.

Watch For These Signs of Caregiver Stress:
1. Denial about the disease
2. Anger at the person with the disease and at the situation
3. Isolation and withdrawal from friends and social situations
4. Anxiety
5. Depression
6. Exhaustion
7. Sleeplessness
8. Irritability or dulled emotions
9. Lack of concentration and frequent memory lapses
10. Health problems such as physical aches and pains and an increase in smoking,  drinking alcohol or taking sleep medications 

Seek help when the impact of chronic stress reduces your ability to care for your relative or yourself. Experts warn that if you are experiencing even a few of these symptoms regularly, you need to make some immediate changes.

You can call your local CLSC

The Alzheimer Society of Montreal at 514-369-0800

Alzheimer Groupe Inc at 514-485-7233


  • Charlene Collins - Atlanta Family Health Examiner 5 years ago

    Good job on this.