|The Long Journey
Caring for Your Loved One
If you are caring for a loved one with Alzheimer's, you are already aware of the many emotions you face. At times you feel positive, able to face the day with confidence. At other times you can easily become overwhelmed with doubts and concerns that you may not be able to provide adequate care. Over the years I, too, have experienced the full range of these emotions. I have been weak. I have been strong. But always, I have gained from accepting the lessons that have been revealed along the way.
Five things I have learned as a caregiver:
Be good to yourself
Patrick always used to say, “Be good to yourself. Fill yourself up with as much good as you possibly can, provided that it doesn’t hurt anyone.” Through the years I learned the value of that. If you support yourself, if you let yourself feel the best you can, you will have far more to give to others. And since, as a caregiver, you must be able to give to another, it makes sense to invest in yourself so that you will have more to give. Give yourself permission to take time—time to rest, time for a private cup of coffee, a wonderful book, a walk in the sunshine. Even if you think you can’t afford to do this, do it. In the long run, it’s the little things that will add up to give you strength to handle what faces you every day.
You think you can do it all. And for awhile you may be able to. But Alzheimer’s is relentless, constant, with each day demanding more of your time and care. I often hid my needs. But when I did express need, I found so many willing to help. And so I say…reach out. Ask for help. It doesn’t have to be big things—a grocery list, picking up the dry cleaning, vacuuming, watering the flowers. You’d be surprised—they feel good that they are helping, you feel good that you are embraced by friends…. and most importantly, you are receiving small measures of relief so badly needed.
Discover your limits
We are not made of unlimited energy, patience, abilities. We have limits. And when we are caring for our loved ones, it’s important to know that, as much as we may want to do it all, as much as we may promise to ourselves and to our loved ones that we will….that may not be possible. Our intentions may be pure, but the fact remains that in some cases we are not trained to give the type of care that our loved ones may need. And if we discover that we have reached those limits or cannot provide to the extent needed, then it is the most loving thing to make sure that they receive the best—even if that means relinquishing your efforts to professional help or a nursing home. You may find that, released from those responsibilities, you can then provide more of what you had intended—love, support, with time shared together.
Hang on to the positive
Alzheimer’s has power to affect your life. But I have found that while the disease is beyond our control, there is in fact, a choice. We do not have control over the power of Alzheimer’s, but I believe we do have a choice as to how we react to this disease. We are given all sorts of moments to react to---moments of pain, moments of despair, moments of humor, moments of joy. And if we react to the positive moments and assign to them as much power as those moments of pain, then we have taken a step toward not being defeated by any disease or condition that imposes itself upon us or our loved ones. Sometimes those moments are so subtle that they may go unnoticed, overlooked. But if we open ourselves to them, I truly believe that we can begin to see that in and around this disease, life is still going on. With that awareness, we can then honor that life and treasure the joys that are given us.
Learn to let go
Of all the things that Alzheimer’s teaches you, the hardest lesson is letting go. In the beginning, the letting go comes in the form of letting go of the plans and life style you once had but which this disease now is destroying. Later, when losses become more evident, it’s learning to not compare your loved one to what he/she was before…of letting go of what was in order to help maintain what is. And finally, it’s letting go of the very struggle itself, of letting go of your loved one as a final affirmation that his/her life had meaning, and is now completed. As painful as this process is, it is a part of the life you have chosen to celebrate and honor.
HELPLINE: If you are caring for a loved one with Alzheimer’s, you may sometimes feel overwhelmed, unable to face another day of demands that have been placed on you. It may all seem too big, too much. If you feel desperate, unable to cope, or simply don’t know where to turn, consider calling the Alzheimer’s Association’s Contact Center 24/7 Helpline. This toll-free service has trained professionals who can answer even basic questions, make suggestions about dealing with the challenges of care giving, provide emotional support, and guide you toward care options. Call anytime at 1-800-272-3900.
ALZHEIMER’S ASSOCIATION LINK: This wonderful organization reaches out to caregivers and individuals with dementia in so many important ways. They have provided outreach programs designed to educate and support family members in their struggle to care for loved ones. They are dedicated in their efforts to provide assistance: Medic Alert® + Safe Return® bracelets for those with dementia who may wander from their homes, caregiver and early-stage support groups, and free, confidential family consultations and educational programs. Their website www.alz.org will help you locate Alzheimer’s Association chapters throughout the United States. In a situation that is sometimes characterized by despair and frustration, it is comforting to know that the Alzheimer’s Association is not giving up. Efforts are continuing to be made to provide the gift of hope to those in an otherwise hopeless situation.