The Emotional Journey of the Alzheimer's Family
Caring for someone with Alzheimer’s is certainly one of the most stressful challenges a person can undergo. For some, the degree of strain is so great that it can interfere with providing good care, and can lead to hastened placement of the individual in a facility. The stress of caring for a loved one with Alzheimer’s can be harmful to the care partner, as well.
Taking good care of oneself must be the first job of anyone who is caring for someone with Alzheimer’s disease. A care partner can only manage the many tasks and challenges involved if he or she is in good shape mentally and physically.
With this is mind, here are a dozen pointers that care partners may find helpful. These tips, and others, are discussed in greater detail in the book I co-authored with Kesstan Blandin, The Emotional Journey of the Alzheimer’s Family.
1. Take Good Care of Your Own Well-being
Care partners frequently neglect their own health needs while focusing on the needs of the person with the disease. Eating and sleeping well are critical. So is regular physical exercise. Have regular visits with your primary physician. A good primary care provider will be sensitive to how you are managing stress and will intervene when it appears necessary.
2. Get As Much Help As Possible
You will feel much less stressed if you get as much help as possible with the job – other family, friends, paid assistants.
Sometimes the greatest hurdle in achieving this goal is not the lack of availability or willingness of others to help, but the reluctance of the primary care partner – particularly a spouse – to acknowledge the need for assistance, and allow others to help.
3. Have Regular Periods of Respite
Respite means not only that you have time when he you are not engaged in providing care, but also, time when you are relieved of the psychological burden of worrying about the person with the disease. In order for this to be possible, you need helpers who are trustworthy, and with whom the person with Alzheimer’s is reasonably comfortable. This can take some doing, but is well worth the effort.
4. Maintain a Social Life and Interests
Separate from the Person with Alzheimer’s Disease
You need to maintain you own sense of identity, independent from that of being a care partner, and continue to pursue those activities that have been important to you previously. This should include social contact with persons other than the individual with Alzheimer’s.
5. Learn as Much as Possible about the Disease
Knowledge is critical in managing any chronic illness, but this is especially true in the case of Alzheimer’s disease. Learning about the behavioral challenges that are common in Alzheimer’s disease, and how to manage them, may be more valuable than any medication currently available for this.
6. Engage in a Comfortable, Open Dialogue about the Disease with the Person with Alzheimer’s
While it may sometimes seem that talking about the disease with the person with Alzheimer’s will create additional stress, usually the opposite is the case. Family members – care partners and those with the disease alike – often report that they are much more comfortable once they have been able to talk openly about this previously - avoided “elephant in the room”. Of course, this must be done in a way that is not judgmental, and is sensitive to the self-esteem of the person with the disease.
7. Talk with Close Family and Friends About the Illness
Perhaps you feel that discussing the situation with other family members or friends is unnecessary and perhaps even disloyal. While that sentiment is understandable, it is based on the false premise that Alzheimer’s is something about which one should feel ashamed, and that it should be hidden from others. It is important not to let old-fashioned notions about the illness interfere with you getting all the support you can from friends, family, and other confidantes. Doing so will help you be a better care partner, and that should be the goal that overrides almost anything else.
8. Attend a Support Group Regularly
Support groups offer unique and powerful benefits, and many care partners indicate that their group has become a vital lifeline at a very difficult time in their lives. Even people who initially feel they don’t need to go to a support group find them extremely beneficial, once they start attending regularly. You are not alone in trying to cope with this.
9. Find Activities Your Loved One Will Enjoy—Especially Activities You Can Appreciate Together
A common challenge family care partners face is being able to identify activities that are appropriate, achievable, and enjoyable for the person with the illness. Take careful note of those abilities that have been preserved in the person with the disease, and focus on activities that make use of the capacities that remain. Finding the right activities and pursuing these depends on your motivation and creativity, more than anything else. Usually, the person with Alzheimer’s is no longer able to initiate this type of spontaneous activity.
In addition to identifying suitable activities for the person with the disease, it is especially valuable to identify activities that the two of you can enjoy together. Try going for walks together. Not only is there benefit in the activity itself, but also, walking together promotes another crucially important activity: talking to each other.
10. Find and Celebrate the Positive Aspects of Providing Care
While there are many difficult and stressful aspects of caring for a loved one with Alzheimer’s, it is not all negative; nearly every care partner can point to positive aspects of the undertaking. Being able to focus on the positives of any difficult task is good for your mental wellbeing, and that is especially true for this task.
11. Focus on What You Can Control, and Learn to Accept the Rest
People who have a very strong need to feel “in control” tend to have a very difficult time as care partners. But the nature of Alzheimer’s is that the disease is generally in control - not really your loved one, and certainly not you, unfortunately. Try to determine which aspects of the situation you are able to predict or control, and focus on those, while recognizing and accepting the many aspects of the situation that are not in your control. Things you can control are your own behavior and emotional reactions to the situation. This is where you should focus your efforts.
12. Know When You Have Reached Your Limits, and Act Accordingly
There may come a point when you feel you are no longer able to continue the tasks of caring for someone with Alzheimer’s at home. It is neither shameful nor disloyal to recognize the point when a change needs to be made, and act accordingly. Making preparations for this ahead of time should not be viewed as a sign of weakness or disloyalty, but instead as a concession to reality, and as an act of love for the person with the illness.
A version of this post originally appeared on Psychology Today.