Seventy five percent of people with dementia have Alzheimer’s disease. The survival rate for a person with Alzheimer’s averages 9 years. More than 4.5 million Americans have Alzheimer’s disease. One family in three has a member with a dementia problem Are you taking care of one of them?
If so, you know that your job is not only hard—it feels impossible sometimes.
Share your feelings
When you find out someone close to you has Alzheimer’s, it’s common for you and the Alzheimer’s patient to experience:
As time goes on, you, as a caregiver, can also add to the list frustration and a feeling of being trapped.
People who haven’t taken care of someone with Alzheimer’s often have no idea how difficult and draining it can be. Nobody can understand what it’s like to live with someone who forgets everything you say, who can’t dress or bathe or go to the bathroom alone, who forgets your name and who eventually may become argumentative, aggressive or agitated.
There are two basic things all caregivers need: emotional support for themselves and an overall plan of care for the Alzheimer’s patient.
Taking care of yourself
It’s important to have emotional support as you embark on your journey as a caregiver. That means it’s important to acknowledge your feelings and to do what it takes to deal with them. That can mean joining an Alzheimer’s caregiver support group, checking in with a counselor on a regular basis, or maintaining connections with your church or other religious or spiritual organization that has meaning for you. It could even be something less formal, such as meeting regularly with good friends who will provide a sympathetic ear.
You also have to make sure you eat well, get a little exercise almost every day and get enough sleep.
If you’re angry, depressed and run-down for a long period of time, you’re not going to be much help to anybody, including yourself.
Ask yourself some questions
Here are some questions that can give you a sense of how much stress you’re actually feeling:
Do you feel angry with the person who has Alzheimer’s? Does the person make you feel sad? Depressed? Embarrassed? Anxious? Do you feel like caring for the person takes up all your time? Does the person seem more demanding than necessary? Do you feel uncertain about your future? Do you feel as though caring for the person has caused you to lose all your money, lose your social life, your freedom or your privacy?
The more “yes” answers you have, the higher the stress and the more crucial it is to get that level down by reaching out for external support.
Making your care plan
In the beginning of an Alzheimer’s diagnosis, it can be tempting to think you’ll be able to handle this on your own and deal with things as they arise. This is partially true. You do have to be able to roll with the punches, to a large extent. And there probably is a lot you’ll be able to do on your own.
But Alzheimer’s disease has a fairly predictable course. The best thing you can do for yourself and for your loved one is to join an Alzheimer’s society or foundation as soon as the disease is diagnosed. The experts there will be able to tell you what you can expect at the different phases of the disease and what you should take care of right away. For example, they’ll be able to give you advice about legal issues, such as wills, living wills (also called advance directives), power of attorney, and other similar issues. They’ll also be able to give you advice about safety, such as how and when to stop the Alzheimer’s patient from driving. They’ll let you know when you need to have certain discussions with your loved one, before the disease makes those discussions impossible.
As time goes on, and you realize that caring for your loved one has taken on a life of its own and is overwhelming you, the professionals at an Alzheimer’s society will be able to point you in the direction of any type of help that’s available t you. They’ll be able to tell you what your options are.
They’ll also be able to help you handle what many consider to be the most difficult thing of all—dealing with the fact that your loved one seems like a completely different person.
Don’t try to do it alone
The main message here is that if you are caring for someone with Alzheimer’s disease, you need assistance. Not because you’re lazy or weak or uncaring, but because the job you have is not one that even the strongest, most intelligent, most caring person can perform completely alone.
The Alzheimer’s Association; W. Molloy, P. Caldwell. Alzheimer’s Disease: Everything You Need to Know. Firefly Books, Buffalo, New York, 2003.