Today there are between 5 and 6 million people in the United States who suffer with Alzheimer’s disease and over 100 million people who have known a family member, a friend, or a neighbor who has had Alzheimer’s. Alzheimer’s disease has touched so many people that it has had a large impact on all of our lives. As your life expectancy goes up so do your chances of getting Alzheimer’s. It is unknown who in our circle will become affected by this disease–our mother, our father, our friend–so, learning how to cope with Alzheimer’s is a concern for everyone.
PUTTING YOURSELF FIRST
If one of your loved ones has Alzheimer’s, one of the most important ways of coping is learning to take care of yourself. There are different stages or Alzheimer’s and each stage is progressively more limiting. This makes each new stage more demanding for the loved ones. When Alzheimer’s strikes someone you love, it can become all consuming. Realize that Alzheimer’s is a marathon, not a sprint. It is important not to let the disease take over every corner of your life. It is okay to put yourself first.
Many family members experience a lot of guilt. Replacing the feelings of guilt with the commitment to take care of your needs and wants can make it easier to handle all of the problems that Alzheimer’s brings. Everyone who loves the person with Alzheimer’s experiences loss, which increases as the disease progresses. Develop a support network early on. You will need to know where you can turn for the help you will need. When others offer help-take it!
The loss is especially acute for the primary family caregiver. If you are a family caregiver, you need to plan regular respite for yourself. Your need for support is considerable. Whether you get respite from family and friends or from professionals (All For You Home Care), coping with Alzheimer’s means making sure that you get regular “time away”.
Throughout the Sacramento region there are support groups where family members affected by Alzheimer’s can come together. Many find such groups very comforting. Here they can listen to others, gain pragmatic ideas, get information, share their own pain and frustrations, cry, and even laugh. Others find it helpful to seek professional counseling with a therapist or doctor. There are also different on-line groups where people can get help and support.
To cope with Alzheimer’s it is essential to learn techniques for better communication. Following are tips that have helped others communicate with their loved one who has Alzheimer’s. It is important to remember that no matter what you do, communication with someone with Alzheimer’s will always be difficult.
Ask one question at a time
If you ask more than one question at a time, you will only confuse the matter for the person with Alzheimer’s. This will make it less likely for them to be able to answer your question.
Be careful not to interrupt
When you interrupt a person with Alzheimer’s it makes it more difficult for them to complete a thought.
A person with Alzheimer’s may take a long time to respond to your question or thought. Be patient and remember that they are doing the best that they can.
Call your loved one by their name
One of the first things we learn in life is our name. When you want anyone’s attention it is best to use their name, but with someone with Alzheimer’s it is particularly important.
Do not argue
It is difficult not to argue with the person with Alzheimer’s because many of the things they are likely to say make no sense to most of us. It can be difficult not to respond in what seems like a reasonable and rational manner. It is important to remember that the disease that has captured their brain distorts their view of things. You cannot argue them into reality. You will only make things more unpleasant.
Pointing or gesturing is often an easier and more effective form of communication for someone with Alzheimer’s. Do not limit communication to the use of words.
Have their attention before speaking
The person with Alzheimer’s may not be attending to you. Before you speak, get their attention.
Listen as long as they are struggling to speak
When the person with Alzheimer’s is struggling to say something, you will need to listen as long as it takes for them to express themselves. When they are struggling with this task, it can seem like a very long time.
Listen carefully for the meaning behind the words
Frequently the person with Alzheimer’s may use the wrong words. Rather than responding to the exact words, attend to what they are trying to communicate.
Pronounce words carefully
Often we get very casual with how we pronounce words because most people are able to understand us even when we are not careful with the precise pronunciation. For the person with Alzheimer’s it is important to be precise in how you speak.
Speak at eye level
Making eye contact can make sure that you have their attention. You can only do this when you are facing them and it is easiest if you are at the same level eye to eye.
Speaking in a hurried or loud voice makes it more difficult for the person with Alzheimer’s to respond appropriately. If you speak in an intense manner, the person with Alzheimer’s may become agitated and escalate the situation.
When you speak quickly, it is hard to sort out the specific words you are saying. Much like when someone is trying to learn a foreign language, they are more likely to understand if the words are spoken slowly.
Try to read facial expressions
Struggling to express thoughts through words is difficult for the person with Alzheimer’s, yet they are likely to make facial expressions associated with what they are attempting to say. This is especially true when what they are trying to say is something they feel strongly about.
Use simple words
When you are trying to communicate with someone with Alzheimer’s it works a lot better to use short, simple words. Using words with one syllable is best.
When you don’t understand, guess. Guessing is a way of prompting and this can help the person with Alzheimer’s find the right words.
Independence is an important value for all of us. It is something that none of us would give up willingly. The loss of independence is a tragedy for those suffering with Alzheimer’s.
Early in the course of Alzheimer’s, the disease may be difficult to diagnose. At this stage, the person with the disease is still capable of exercising judgment and decision-making in most situations. They may have only minor disabilities and need little help to be safe. At this point, thinking about taking away their independence is likely to build mistrust. It is important to support the person with Alzheimer’s desire to be independent for as long as possible. There is one exception to this approach. In the case of driving the risk is high and the danger so extreme, that the person with Alzheimer’s should stop driving when they are first diagnosed with the disease.
At some point, the judgment of a person with Alzheimer’s will become compromised. They will become increasingly dependent on others to make decisions on their behalf. The time period when safety becomes an issue varies. Alzheimer’s is a physical disease that attacks the brain and effects personality, behavior and mood. The person with Alzheimer’s develops problematic behavior and troubling personality changes. Even small changes and transitions become very difficult. Now is the time when you will have to consider the living situation of your loved one for the first time.
There is no cookie cutter answer for how to cope with this period of life. Making the decision more complicated is knowing that change is incredibly difficult for the person afflicted. Can a professional caregiver come into the home and care for both the loved one with Alzheimer’s as well as the spouse? Would this be easier for them because of the difficulty of dealing with changes? Should the desire to stay home be considered? Can your loved one live with another family member? Would your loved one do better in an elder care facility? What role should cost play? How much money is available for care? At this stage people with Alzheimer’s cannot make decisions for themselves, and the family needs to begin making these tough decisions. This is a difficult time full of difficult choices.
ALL FOR YOU HOME CARE
All For You Home Care takes care of many people who have Alzheimer’s disease. We keep the older person as independent as possible for as long as possible. Professional caregivers come into their homes and provide supervision, housekeeping, meal preparation, errands, mind stimulation, personal attention and social support. We also provide support for the entire family. Knowing that your loved one is safe and cared for is an effective way of coping with Alzheimer’s disease.