I think Janice is a remarkable woman. Now in her mid-70’s, she has survived the poverty and hardships that came with growing up in a poor family in rural Alabama. She married young, in part to escape the drudgery and hard work of life on the farm. After somehow managing to successfully raise six children and caring for both of her parents through their old age illnesses, she had been looking forward to finally finding some time to travel and do some of the things that she’d had to put off for so long. Never in her wildest imagination did she think that one day she would spend these years caring for her husband as he succumbed to the ravages of Alzheimer’s disease. In spite of her own heart problems and declining health, she would not have it any other way. She has resisted suggestions from friends to put Howard in a nursing home, and is determined to keep him at home as long as possible.
At first, things were easily manageable – it brought back memories of caring for her children when they were young. Howard was still able to do many things for himself – he just needed some guidance and supervision to get him over the rough spots. But as things progressed, the tasks become more daunting, the obstacles higher, and the burden increasingly heavy. At the urging of her children, Janice took a week last month and traveled to the beach for a break. She returned home after only four days feeling guilty that she’d left Howard, and even more guilty that she’d actually begun to enjoy her time away. Nonetheless, she was growing tired, frustrated, and began doubting whether she was actually up to the task of caring for her husband.
If there is one consensus among caregivers, it is that caring for a loved one with dementia is hard work and, as with any difficult job, there is a high risk of exhaustion and burnout if the worker is not properly taken care of. Care giving is not a sprint in which you burn up all of your energy in a mad race to the finish line; rather, a very long marathon that must include rest breaks, time to heal blisters and wounds that develop along the way, and a tremendous amount of emotional support. Here are some suggestions to help you along the way:
Identify and develop your social support network. Your network may include family, friends, physicians, counselors, sitters, adult day care centers, support groups, and other community resources such as FOCUS on Senior Citizens. Develop your network, know what each piece in the network has to offer, and utilize it to the fullest.
Identify the stressors you struggle with as a caregiver, i.e., those tasks or behaviors that are most frustrating or anxiety producing. Once identified, think through them and use your support system to help plan your responses to these situations and to get additional help when needed.
Become a care-giving expert.
Educate yourself as much as possible about the disease your loved one is facing and its progression, as well as about different strategies to use in handling troublesome situations. Some excellent online resources include http://www.caregiver.org/ andhttp://www.alz.org/. Helpful books include Alzheimer's Disease --The Dignity Within: A Handbook for Caregivers; and A Caregiver's Guide to Alzheimer's Disease: 300 Tips for Making Life Easier, both available online at http://www.caringconcepts.org/.
Get adequate rest, even if it means sleeping in separate bedrooms or hiring a sitter at night.
Try to keep incidents in perspective. Much of what is happening is the disease, not the person. Writing down your feelings or thoughts in a journal will often help put them into better perspective, is a good way to release emotions, and will become a memorable record of your journey.
Set realistic goals regarding what and how much you can do for your loved one.
Be good to yourself. Give yourself frequent praise and rewards for your patience and endurance.
Continue to find ways to have fun.
Use your sense of humor – it relieves stress and is a positive emotional release for both of you.
If family or friends offer help, accept it.
Set aside certain days or parts of certain days for yourself, and find a companion or day program for your loved one for that period of time.
Forgive yourself for not being perfect and stop trying to be perfect. Don’t be hard on yourself when you experience impatience, frustration, sadness or anger.
Take care of yourself physically and emotionally. Eat well-balanced meals, get regular checkups and exercise.
Devotion to caring for a loved one is to be admired, but devotion from a caregiver not taking care of themselves is about as effective as personal trainer who is obese and out of shape – they just are not going to be up to the task. In order to be successful, a caregiver needs to be just as committed to taking care of themselves as they are their loved one, for if they are not around to do the job, who will be?
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