Maintaining Caregiver Health

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Caring for You: A Guide for Dementia Caregivers

Caregiving causes tension and strain because of constant demands, emotional pressures, isolation, lack of personal time, financial concerns, and changing personal relationships. But dementia caregivers are exposed to greater than normal stress because of the progressive nature of the disease, the absence of a cure, and the realization that the lives for both you and your loved one have been changed – forever.

Severe stress like this can cause wide-ranging mental and physical issues (e.g., sleep and mental health disorders, weakened immune system, cardiovascular issues, digestive disorders, cognitive impairment, diabetes). As challenging – and even life threatening – as this stress is, it is essential for you to find time to relieve the pressure and learn how to manage it.

Understanding the Unique Stress of Caregiving

Your early experiences as an Alzheimer’s caregiver are challenging and burdensome enough, but it is unlikely that you will be able to foresee the debilitating toll that constant caregiving responsibilities can inflict over the coming months and years. Don’t mislead yourself into believing that you are stronger than caregivers who have preceded you. Everyone needs time to maintain and reinvigorate themselves. The mental and physical health risks of ignoring this reality are too threatening to ignore.

Once this reality is accepted, the hard part begins. How do you create blocks of independent time for yourself? Following are some standard suggestions, but your situation may require more creativity.

In the early stage of the disease, you will probably feel comfortable leaving your loved one alone for two or three hours at a time. But as cognitive skills decline, this will no longer be advisable.

When other family members are willing to share the burden, it is best if you can schedule fixed times each week that they will assume the caregiving responsibility.

Good friends will likely be available to take your loved one out for coffee breaks, meals or other activities, although this will usually be on an irregular schedule.

If your loved one has been involved in a book club or other similar activity, that group will usually be willing to allow continued participation (at least in the near term).

Fellow church members are usually a reliable source of support.

Some caregivers have agreed to alternate caregiving responsibilities (switching back and forth between caregiving and free personal time once or twice a week).

Community senior services or resource centers may offer helpful programs.

Local memory care facilities often have day programs that are well designed to meet the needs of people with dementia. They may also provide respite care (overnight accommodations for people with dementia), so caregivers can take extended breaks.

Organizations providing paid caregivers for seniors at home are often expensive but do provide reliable services.

Some counties have volunteer programs that provide periodic breaks for home caregivers.

Additional suggestions about this and other concerns may be available by contacting the Alzheimer’s Association’s 24-hour Helpline at 1-800-272-3900.

The Benefits of Free Time

The time you create will be beneficial no matter how you use it! But here are some thoughts for you to ponder.

If you feel exhausted, sleep and rest are priorities. Nothing is more essential and restorative.

Interaction with family, friends and other people who can relate to your situation and provide supportive conversation can help overcome feelings of loneliness and isolation. Adult conversations are refreshing and reinvigorating.

Caregivers who have active inner lives and engage in prayer, meditation and contemplation are less lonely and more likely to positively deal with adversity. Spiritual development is about adopting a holistic perspective that transcends a self-focused viewpoint.

As you think about the challenges you face, remember that the care you provide makes a difference, and you are doing the best that you can in a difficult situation. This gives you confidence and reinforces your self-esteem.

Try to find the relaxation techniques that work best for you.

Gratitude or daily journals are cathartic and comforting – a great way to stay in touch with yourself.

Caregiving based on obligations or promises can lead to resentment. To sustain yourself emotionally you must want to do it. But remember that your core obligation is sustaining who you are. Don’t lose yourself during this journey.

Support groups are exceptionally valuable for dementia caregivers because sharing experiences with like-minded people is both informative and reassuring. As you learn more about the progression of the disease and what to expect, you reduce feelings of uncertainty and stress. This positively affects your expectations and resilience.

When confronted with issues that are overwhelming, seeking the assistance of a therapist or counselor may be appropriate. Independent input can help you refocus.

For additional support, you may want to join https://alzconnected.org/, the Alzheimer’s Association’s online caregiver community.

Spending time outdoors enjoying nature helps you regain perspective.

Try reading uplifting books and articles to improve your spirits.

Having coffee breaks, breakfasts or lunches with people who have overcome similar personal challenges is beneficial.

If you have hobbies that can command your attention, take advantage of them.

Physical activity is essential for maintaining both physical and mental well-being. When we were young and more athletic, we thought that speed, strength and endurance were the best measures of being in shape. Our exercising was tilted toward running, weight training and cardio activities. As we age, flexibility, range of motion and balance became increasingly important. Cognitive abilities decline and the unconscious processes our brain goes through to help us maintain our balance may not integrate as quickly as they did earlier. Exercising of all stripes is helpful, but stretching and flexibility exercises can help improve balance, range of motion, reduce stiffness, and promote joint health. Our exercise regimen should take this into consideration.

Healthy habits and good luck may buy time, but they will not prevent the inevitable. Old age and health issues are inseparable for us as well as our loved ones. Know that acceptance of deterioration is a necessary adjustment in late life. If we always battle against getting older, we will always be unhappy, because aging will happen in any case.

Think of yourself as a role model for those who are around you. How you manage this challenge will leave a permanent impression on your kids and grandkids.

People with dementia change over time and so do their needs. At some point, your loved one may require care beyond what you can provide on your own. Accept the changes as they occur. Become aware of community resources and care options to make the transition easier. It’s a tough decision and expect it to be difficult. It may even take months to adjust. But, in time, this will pass.

Bob Atchley made an important observation about finding happiness in our elder years. In the face of declining health, various other diminishments, and the inevitability of death, the people who free themselves from expectations are most likely to be adaptable and content. They are more able to accept conditions that overwhelm other people. By this age, we should recognize that we can influence outcomes but not control them. In our elder years, adaptability trumps expectations.

In the past, I have been skeptical of Lou Gehrig’s famous line, “Today, I consider myself the luckiest person on the face of the earth.” How could anybody suffering with a terminal illness like ALS utter this phrase honestly? Because of Alzheimer’s, I now get it. In his waning days he was reflecting on his entire life and realizing that the illness he was experiencing was a small segment of a remarkable life that knew mostly happiness, successes and extraordinary recognition. Like us, he would not have changed places with anybody else, because he felt blessed. The ability to retain this broad perspective will be essential in the months and years to come.

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