Caring for someone with Alzheimer’s disease impacts every aspect of daily life. The demands are relentless and compelling. This is especially true when the patient is a loved one, which is usually the case.
As Alzheimer’s patients lose one ability after another, caregivers face tests of stamina, problem-solving, and resiliency. They also experience recurring loss and grief. These challenges make caring for an Alzheimer’s patient one of the hardest tasks many people encounter in their lifetimes.
A well- kempt, pleasant woman with sad eyes and signs of fatigue sits in my office. She is one of the many people I see who are caregivers – people who, denying their own needs, take care of their loved ones around the clock.
My patient is a wife of a dentist who is suffering from advanced dementia. She is talking about their long marriage, their friendship, and the warmth and care she used to receive from him. “He is gone now, he is so different, I sometimes think it is not him,” she says.
I know this family well. And I understand the stress, the pain, the grief and the losses she suffers.
Her situation is all too common. Researchers know a lot about the effects of caregiving on health and well being. For example, if you are a caregiving spouse between the ages of 66 and 96 and are experiencing mental or emotional strain, your risk of dying is 63 percent higher than that of people your age who are not caregivers. The combination of loss, prolonged stress, the physical demands of caregiving, and the biological vulnerabilities that come with age place you at risk for significant health problems as well as an earlier death.
During this long and difficult journey, communication diminishes and rewards decrease. Without strong support, the caregiver risks his/her own well-being.
I am often asked the same question: “What do I do? I do not have time for myself. She needs me more and more.”
My answer in always the same: “Only when you first help yourself, can you effectively help your loved one. Caring for yourself is one of the most important—and one of the most often forgotten—things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too.”
And I always give the same example: remember when you are flying, and the flight attendant teaches you to put an oxygen mask first on yourself and then attend to the child or somebody else who needs help. If you do not stay well and healthy, you will not be able to help anyone else.
My patient reports:
• Sleep deprivation – “I listen to his every move. I am afraid he will get out of bed and fall.”
• Poor eating habits – “My main goal to feed him, he is so picky now and I have to feed him like a baby.”
• Failure to stay in bed when ill – “Yes, I had high blood pressure the other day but he needed me, and the home aide was not able to deal with him.”
• Postponement of or failure to make medical appointments or follow up on needed medical care – “I tried to keep my appointment – see I came to see you – but his needs are more important. I often forget my own medications; I have to take care of him first and then I lose track of me.”
• Failure to exercise – “ I never was much of a person to exercise but I liked walking. Now I can’t leave him, so I don’t even walk any more.”
The list could go on and on. And again and again I am saying the same thing:
You are important and you have to take care of yourself.
I’d like to give you few strategies:
1. Cognitive Strategies:
• Stop blaming yourself for this disease. It is no one’s “fault.”
• Watch out for the “all or none” trap; learn to think in less extreme terms. For example: do not think to yourself that you cannot be happy unless things are the way they used to be. Learn that you can adapt to things as they are now, and that things are not all bad. You can still laugh with him, you can listen to the songs you both love with him, and you can show him old pictures and talk to him. You may even find new things to do together.
• Practice new forms of “self-talk” so that you can encourage yourself mentally as you go through the day. For example: remind yourself that you are a strong person who has coped with difficult situations before this, and done so very well. Tell yourself that you are doing a good job no matter what.
• Focus on today. Stop yourself from looking too far ahead and imagining more loss and catastrophe. Yes, there are likely to be difficult times ahead, but none of us can see the future. We must deal with what we have in front of us, today.
• Be gentle with yourself, even if you just flew off the handle and yelled at the person you love and are taking care of. We all overreact at times, and we all make mistakes. Forgive yourself and resolve to do better next time.
2. Behavioral Strategies:
• Learn ways to relax in stressful situations – use the breathing exercises, hand exercises, and other skills we have taught you.
• Take time out FOR YOURSELF. You can and you should do something YOU like and do it without the guilt. Schedule an activity for you every week and arrange for someone to come in to relieve you so you can go out without worrying.
• Learn how to ask for help. There may be people close to you who can give you more of the help and respite that are needed. Asking for help is not a sign of weakness, but rather an expression of love and self-care.
• Make necessary changes in your environment that can make your job of care giving easier. This might mean rearranging furniture, adding shelving or other space to place needed items in handy reach for you, or moving the patient’s bed. Get baby monitors so you can comfortably go to another room to do laundry or other tasks with less worry about the patient.
• Give yourself treats now and then. Small goodies like a favorite food, a new book or CD, or a haircut or manicure can be self-nurturing. Such little additions to your daily life can raise your spirits.
Your spouse may not be able to attend to your needs any more, but you can be good to yourself — and you deserve it!
As I am thinking of this patient and many other patients in the same situation,
I want to say once again: you must take care of yourself and your own health first!