In addition to all the considerations about care planning for the person with dementia, there is the overriding question as to how to remain resilient when the exhaustion of caregiver stress hits. If one thinks of the safety briefing on an airplane in the unlikely event that the cabin air system should fail, we are instructed about how to put our oxygen mask on first to make sure our own mask is correctly fitted before helping anyone else. The analogy to self care and caregiving when you are caring for a person with dementia is striking. Clearly, making sure that your caregiving oxygen mask is correctly fitted before you assume the many tasks that come under the heading of caring for a person with dementia is an essential but often compromised prerequisite for remaining resilient.

It may sound somewhat contradictory to consider your own needs first since there is so much to think about and deal with, for and on behalf of the person with dementia. However, the irony here, as on the airplane, is that if you ignore your own care needs, you will not be able to be effective in assisting the person with dementia. Even if you are somewhat successful with the caregiving tasks, your ability to sustain this care over the long term will be significantly shortened if your own physical, emotional and spiritual well being are not attended to.

Sometimes it is hard to know when you are at risk for losing your resiliency capacity. If you have been a high energy type of person before assuming care giving tasks, you might not even notice the extent of your increased stress and fatigue levels. What you want to avoid is waiting until you are so physically, emotionally and spiritually spent that you reach the point where there are very limited energy reserves into which you can tap. Clearly the symptoms of caregiver stress and the ways of being a healthy caregiver are worth reviewing here.

It is helpful to make an assessment of your current symptoms of possible caregiver stress compared to the way you were before your caregiving responsibilities were assumed. This should be done for the primary caregivers as well as those who are assuming caregiving responsibilities from a distance. Are you angrier, socially withdrawn, anxious, depressed, exhausted, irritable, etc.? Are you having problems with sleeplessness? Are you unable to concentrate? Are you having health problems that are beginning to take their toll mentally and/or physically?

If there is an increase in the above symptoms, that change ought to be taken as a warning sign, and attention should be given to ways of being a healthier caregiver. While there are many ways to decrease these symptoms of caregiver stress, finding the ways that are right for you is extremely important. It is critical to find ways of learning about the illness and resources that are available as the illness progresses. For example, becoming more knowledgeable about behaviors that are part of the progression of the illness along with learning techniques that will enhance communication with the person with dementia can be extremely helpful in this process.

In addition, getting support for yourself, whether it is in one of our support groups and /or individual or family counseling, can make the difference between developing the much needed resiliency or not. One can not overemphasize the need to communicate the variety of feelings that caregiving evokes, and the importance of having people with whom one can talk openly about what are often difficult and sometimes taboo feelings.

Finally, it is important to remember that the caregiving experience is an ever changing one, and monitoring its impact over time can help in knowing when your caregiver stress level is on the rise. One way of preventing this stress level from rising quickly and oftentimes unexpectedly is to take periodic breaks from your caregiving responsibilities. This can be done by utilizing substitute caregivers from within the family or extended family systems or by utilizing professional in home or residential respite services. Remember that you need time for rest, recuperation and relaxation in order to remain resilient. Remember, too, that the care consultants and Helpline counselors at our Chapter are available in person and by phone to assist.

For information and support, please call the Helpline day or night at 800.272.3900 or send us an e-mail at helpline@alznyc.org.

— Reva Hoffman,
Director of Clinical Services

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