Unlike the physical changes, behavioral changes are used to assist in the diagnosis of Alzheimer’s disease. As such, they are present before you as a caregiver can understand how severe they will become. In a sense we are already behind the ball because we are starting to deal with these issues immediately at the time of diagnosis, so the strategy here has less to do with preparation and more to do with identification and quick action. At first this will seem like a lot, and it will be a substantial responsibility.
But unlike physical changes, which crop up at seemingly random times, behavioral changes exist on a spectrum. They start small and continue to increase in severity over time. If you can identify problem areas early, the plans and adjustments that you institute at that time only need to be refined and enhanced as time goes on. Understand what’s happening now, and you will be able to get a glimpse at what will happen down the road.
Early Stage Caregiving
In the first stages of Alzheimer’s disease, the changes in mentality and behavior are often subtle, so look for any deviations from the norm. Do you notice that your loved one has trouble remembering the day of the week? Consider perhaps putting a large calendar in an area of the house that they frequently pass through with the date circled as a gentle reminder. If they forget to put food away or wash the dishes after dinner, try giving them a call around dinnertime asking them if they have done so.
Your loved one should remain as autonomous as possible, so it’s important to ensure that they receive help where and when they need it, but are not badgered to the point that they feel as though you think they are incapable of anything. Your loved one may begin to feel bad about themselves in light of their diagnosis and as a result may shy away from their hobbies and their social and personal commitments. Encourage them to continue to do the things that you both know give them value in their life.
Middle Stage Caregiving
Whatever organizational aides you have put in place should be amplified as the disease progresses. As your loved one continues to struggle with things like time and date, maybe think about getting a clock that says the time, date and day of the week every hour. If reading becomes too difficult, consider screen reading software for the computer or devices that offer spoken instructions. You may find yourself calling more frequently and spending more time at your loved one’s house in order to assist with day-to-day maintenance. Your loved one may begin to need help with personal hygiene and dress, so understand that you may have to experience an undesirable level of intimacy with him or her.
A point that requires separate discussion is that your loved one may experience a series of emotional changes that can be very difficult to deal with as a caregiver. Your loved one may become more agitated, suspicious or angry, and can be prone to acting very aggressively on these feelings. One of the most common scenarios involves misplacing a personal item, and then accusing a loved one of stealing it. This situation can be often avoided by making sure that items of value are placed in one location, say the kitchen or bedside table. That way, they are always where your loved one expects them to be. As the disease progresses, you will encounter other situations and you will become aware of what triggers aggressive or abusive behavior. Every situation will be different but above all: try your hardest not to engage. You need to remember that the disease is acting through your loved one, and you should try not to take any attacks personally. Be observant and attempt to solve problems before they arise. Prevention is better than solution.
Late Stage Caregiving
At the final stages of care giving, your loved one will experience a general inability to complete even the simplest tasks, coupled with a generalized lack of communication. Your role as a caregiver could not be more important at this stage. Be on the alert constantly, helping your loved one get dressed and eat and use the bathroom, among other things. Since they will most likely not be able to communicate with you, learn to understand how they express discomfort or pain. For example, itching at the genital region can mean that they have to use the bathroom, so act accordingly. If they continue to itch, they may have an infection, so do not be afraid to examine the area. Again, at these stages your loved one depends on you completely, so you must be able to find a way to fulfill this role. Many people decide to bring in medical professionals at this point, such as a home health aide or a hospice care team. Do not be afraid to consider this option: it does not make you an unsatisfactory caregiver. Always be sure to examine the stress that the role of being a caregiver places on your shoulders, in order to ensure that your time with your loved one remains as valuable as possible.