You start to see the signs long before you hear the diagnosis. But you tell yourself it’s just part of aging. People forget things as they get older, right?
And then comes the day when your Mom can’t remember how to get to her hair salon. Or your Dad doesn’t realize he made the car payment three times in one month.
These are signs of Alzheimer’s. It’s time to get to the doctor for tests. When the diagnosis confirms your fears, it can be overwhelming. The role of caregiver can feel daunting, especially when you’re anticipating the progressive symptoms of the disease.
Our first tip – try and stay in the day. Projecting into the future will only increase your anxiety and drain your energy.
Three Stages, Different Needs
Alzheimer’s is a progressive condition that moves through three stages:
- Early or Mild
- Moderate (Middle Stage)
- Severe (Late-Stage)
The difficulty for a family member who becomes a caregiver is to know what help is needed when and how much is too much. Your parents may misinterpret your intentions or be defensive about needing anyone’s help.
But the early stage of Alzheimer’s is the best time to make decisions. Take advantage of this period to discuss long-term care plans and make sure legal protections are in place to protect their medical and financial wishes. The will, power of attorney, health care proxies and legal guardianship are good topics to discuss.
As the disease progresses, the needs of your parent will increase and so will the demand for your time and emotions. Building your coping skills is important. Alzheimer’s changes the lives of the whole family.
Here are some suggestions that may help you keep it together as time goes on:
1. Safety is the Criteria
Choosing when to involve yourself, especially in the beginning, is complicated. You don’t want to hover, but still, you have a genuine concern for their well-being if they are left on their own.
Safety is the criteria to use – if there is an immediate risk to their safety from attempting to do something alone, you should engage. If not, just offer support and encouragement. Not only is this respectful of your parent’s privacy and dignity, but it also builds confidence and trust.
This is hard for everyone. Protecting your parent is different than treating them as a toddler.
2. Practice Patience
The symptom of Alzheimer’s can be very frustrating to deal with, no matter how hard you prepare yourself. Losing your temper or an irritated tone is only make the patient more upset, uncertain and even angry. When you catch yourself getting annoyed, if possible, step away for a minute or two.
It’s the old airplane crash adage – put your oxygen mask on first, or you won’t last long enough to help others. This is a marathon, not a sprint. It’s important to take breaks and make time to recharge.
3. Keep it Simple
Alzheimer’s patients typically have difficulty staying focused and that can make conversation challenging. How you communicate can help improve retention and clarity. Start a sentence with “Mom” or “Dad” to catch their attention.
Keep it short and simple. “Mom, did you take your pills today?” As opposed to “Mom, I looked in your pill container, the one on the kitchen counter, and I’m not sure if you took your blood pressure medication today or not?”
Maintain a calm voice, don’t engage in argument or conflict and speak to your parent like an adult. It also helps to turn off the radio or TV to minimize distractions when having important conversations.
Many people with Alzheimer’s have trouble taking care of basic grooming, like bathing or brushing their teeth or cleaning dentures. Keep grooming products in plain sight for teeth, face, and hair. Over time, razors and shaving may require supervision.
Make sure that the bathroom is properly equipped for an older adult, including grab handles and plastic mats in the stall or tub. Some folks with Alzheimer’s get frightened in the shower, so be aware that alternatives may be necessary. Try to be conscious of your parent’s privacy.
As long as it’s safe, its best to provide support and allow your parent to perform the tasks themselves. Make sure the soaps, shampoos or body wash are scents that your folks enjoy. Keep fresh towels and wash clothes stocked where they can see them.
5. Establish Routines
We’re all comforted by the familiar. For people with Alzheimer’s (and their caregivers) established routines are particularly reassuring. Routines for getting up, going to sleep, eating and bathing, even getting dressed will make life easier for everyone.
Sleep can be a problem for people with Alzheimer’s but getting on a schedule can help. Putting lights on a timer and making sure curtains or blinds keep the room dark will help. But make sure you have night lights or motion lights for a trip to the bathroom.
Clothes should be matched up in the drawers and closet. It should be easy to pick an outfit that works. Clothes can even be chosen the night before and laid out for the morning. Keep it simple applies here too.
6. Use Technology
Unfortunately, as the disease progresses, people with Alzheimer’s tend to wander. That can be very frightening for everyone.
Wearable technology, like watches, can be used to monitor location and track people who are lost. Sensors can be attached to purses, clothing, even hair ties that have GPS or simply sound an alert when the individual leaves a pre-determined area.
There are clocks designed to help people who get confused about whether the hour display is day or night. Google Glass (specialized glasses that display information) can be programmed to show directions or identify people, and these can be worn outside the home. Amazon’s Alexa device can also be programmed to give verbal reminders – prompting patients to take their medication.
If you have concerns about appliance safety, (especially if you are not a live-in caregiver), there are new sensors that can be plugged into outlets and alert you to appliances that are left on.
7. Taking Legal Responsibility
At some point, you may have to consider legal action to protect your parent from getting hurt and making sure they get the care they need.
Legal guardians are appointed by the court to assume responsibility for an individual’s personal or financial affairs. The person who requires a guardian must be declared incompetent to manage their affairs. Guardians are appointed to care for the person – making sure they eat, sleep, get medical care, etc. – and for the estate – assuming control of their financial affairs.
Sadly, incapacity is an evitable part of Alzheimer’s. It’s important that some legal protections are in place.
8. Home Care or Institutional Care
Decisions don’t get much harder than this. Sometimes Alzheimer’s patients become too much to handle at home. Aggression and violent outbursts are not uncommon in the later stages of the disease. Though moving a parent into a professional care environment is a very emotional decision, this is part of caring for someone who can no longer care for themselves.
The confusion and frustration that people with Alzheimer’s feel can cause them to act out in ways that don’t reflect their previous personality. Not only does that put them at risk, but the risk is also extended to those around them. A living spouse – or you as a caregiver – should not be subject to physical abuse.
Remember, your role is to make sure that your parent has the supports in place to deal with his or her illness. In the later stages, it may be necessary to consider placement in a professional care facility.
Give Yourself a Break
There is nothing easy about becoming a caregiver for a parent with Alzheimer’s. The two of you are going to have good days and bad days. There’s no way around that.
We strongly recommend that you find support for yourself. Many organizations provide outlets for caregivers – whether it’s online support groups or local, in-person networking. It may feel like you don’t have time but that’s a short-term strategy that won’t serve you well.
Right from the start, make time. Make time for things you enjoy. Get your own routine set up to help keep your batteries charged.
Talking with people who are going through the same situation as you can be a lifeline. It’s a place where you can talk about your fears, your frustration, where the need for a good cry is understood.
Support groups are also a good place to share solutions. There are great tips and success stories and updates on technology – which is constantly offering new options to help you manage the day to day care for your mom or dad.
Take care of your health and emotional well-being. Yes, you have a lot of responsibilities, but one of them has to be to yourself. Your parents would want that – they love you as much as you do them.