When coping with dementia, don’t become a ‘Secondary Patient’

According to the National Institute of Health, for individuals over 65 years of age who are in family care, the average age of the caregiver is 63!
When we start families, we are usually in our late teens or early 20s, and we bring a child into the world whom we know will require around-the-clock attention for more than a year. But we are young, we are strong, and we have energy.

This is not the case with family caregivers for loved ones with Alzheimer’s. Our sixties and seventies are not a good time in our lives to take on a new task that will require around-the-clock attention.
What’s worse, the person to whom we give care is not a small child that we can carry in the crook of one arm. It is an adult who in many cases is heavy and strong. And, unlike the relatively brief total dependency of an infant, we can expect that our care giving task can last eight to twelve years!And add to this the fact that a child’s skills and cognition will improve. With your loved one with Alzheimer’s, it is just the opposite. The task of care only becomes harder.
Little wonder then, that many caregivers end up unwell to the extent that too often they will die before the person they are caring for. This is the worst possible outcome for a family living with Alzheimer’s. And if they don’t succumb, caregivers may end up a ‘secondary patient’ whose physical and emotional condition leaves them less capable of performing their care giving duties.

There are many things a caregiver can do to protect their own physical and emotional well-being.
The first is that you must seek help. Some caregivers believe that they are solely obligated to take care of their loved one. This is a dangerous attitude that can only lead to isolation and exhaustion. Seek the support of a friend or relative to spell you with simple tasks, even if they do not involve the direct care of your loved one.
When someone asks what they can do to help you, give them a task, no matter how small or insignificant it may seem.If you do this, you will become more comfortable with asking for help, and this is good.

One of the best ways to take care of yourself is to attend caregiver support groups. Those who are on a similar journey may have useful advice for how you can keep a focus on your health. And, they can serve as friendly monitors to tell you when they hear the words or see the signs that indicate that you are neglecting yourself and succumbing to physical and mental exhaustion. They can be your sense of perspective.

As a caregiver, you must have time to yourself. There are both free and paid services that provide respite or day care for your loved one. The Alzheimer’s Family Organization (www.alzheimersfamily.org) offers a respite program than can more than offset your annual membership fee.

Educate yourself about the disease and your role as a caregiver. There are many books on the topic, and in Citrus County especially there are lots of free workshops for family caregivers. Some of these focus on the ways you can make your task easier and less stressful.

Get your legal paperwork in order. Changes in your loved one’s medical condition can happen fast, and a time of crisis is no time to begin to worry about whether wills, advanced directives, and other legal matters are in order. Hospice of Citrus County offers a free workshop called “Five Wishes” that can show you how simple and inexpensive this process can be.

If your loved one was in the armed forces, it is possible there are veteran’s benefits that can help you financially or provide respite and support. Contact the local Veteran’s Administration office to see what is available.

Put in layers of protection to keep your loved one safe. This can include proper locks and alarms, and a scent kit that can help searchers find your loved one if he or she wanders and becomes lost. The scent kit is available from Find-M-Friends (www.findmfriends.com) or Coping with Dementia (www.coping.today). And don’t forget to register your loved one with the Citrus County Sheriff’s Office (http://www.sheriffcitrus.org/register-someone-with-autism-dementia.php).

These measures may not give you respite today, but they are pre-emptive measures that will reduce the likelihood of a future crisis. Peace of mind is a big part of caring for yourself.

Alzheimer’s care is not a sprint that will be over quickly. It is more like a marathon, so you have to pace yourself and maintain a quality of life for both you and your loved one over a long period of time.
So, please pay as much attention to your medical needs as to those of the person you are caring for. Keep your medical appointments and check-ups. The best care you can provide for your loved one is to care for yourself. And remember that you both deserve the best.

Remember our slogan “We All Deserve The Best”.


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