Alzheimer’s is never an easy diagnosis to hear — especially when the person receiving that diagnosis is your parent, partner, or someone else you love. As a caregiver, you may find yourself feeling like your life is about to radically change, and wondering if you’re really ready for the responsibilities this future will bring.
You may also find yourself wondering what to do — and where to start. Even if you’re already experienced at providing in-home care for your loved one, dementia definitely adds a new factor. To provide the best care possible, you’ll need to make some changes to your lifestyle, your home environment, and your expectations of the person you’re caring for.
What’s next for you and the person under your care? Here’s a checklist of practical steps that’ll help you prepare for the immediate future, starting right now.
Process your emotions, and talk through the diagnosis with your loved one.
The first step to providing beneficial care is to fully accept the reality of the diagnosis. You certainly don’t have to like it — but you do need to acknowledge it, think through its implications, and process your emotions about it. If you’re feeling fear, grief, or even anger, you’re not alone. An Alzheimer’s diagnosis often raises strong emotions among friends and family members, and these feelings can take a while to process. That’s normal.
While some people resist talking about Alzheimer’s with the person who’s been diagnosed, you won’t be doing them any favors by pretending that “nothing is wrong.” Remember, your loved one is also dealing with feelings of grief and loss, worries about the future, and fears of losing themself. Now, more than ever, they need honest communication, emotional support, and reassurance that you understand the facts.
So take time to talk through the diagnosis with your loved one, too. Reaffirm the vital importance of their identity in your life — as a parent, grandparent, or marriage partner, for example. Encourage them to discuss the emotions they’re experiencing, and their expectations and concerns about the future. Above all, make it clear that no matter what may happen, you’ll always be in their corner.
The more your loved one sees that you accept the diagnosis, the more willing they’ll be to acknowledge it openly, and collaborate with you to make the most of the years ahead.
Create a calming and supportive environment.
Depending on the stage of Alzheimer’s your loved one has reached, you may need to make a variety of changes to the home where you’ll be providing care. In the early stages especially, whiteboards and sticky notes can be a huge help for remembering to-do lists, and can ease your loved one’s anxiety about forgetting names, numbers and other essentials. Dosette boxes (pill boxes with compartments for each day of the week) can also help ensure your loved one takes the right medications on the right days.
You’ll also want to install grab bars and anti-slip mats in locations like the shower and bedroom, to help your loved one safely get in and out of the bath and bed. As the disease progresses into its middle stage, it’s a good idea to lock up knives and sharp tools, as well as toxic chemicals, space heaters, and any other objects that could injure your loved one and/or create a fire hazard. Make sure your home is well-lit, and free of tripping hazards like loose electrical cords.
In late-stage Alzheimer’s, your loved one may become frightened and disoriented by loud or confusing noises, reflective surfaces like mirrors, or even brightly patterned wallpaper. A familiar home setting can provide a great deal of comforting continuity — but at the same time, it’s important to take note of sounds, sights and smells that agitate the person in your care, and remove them from the environment as much as is practical.
Spend an entire day with your loved one, and look for ways to keep them engaged.
The simplest way to gain a clear understanding of your loved one’s daily needs is to follow them through a full day, making note of opportunities to help — and to support their ongoing engagement with household upkeep, hobbies and passions, social get-togethers, and other activities that’ll keep them mentally stimulated.
Start by spending time with your loved one during their morning routine. Maybe some changes to the bathroom would help them bathe more comfortably. They might be ashamed to admit they need a helping hand getting dressed, or using the restroom. If you step in to help, make it clear that there’s no need for embarrassment — you’re doing this because you care.
If the person in your care is active enough to run errands, pay bills, and handle household chores, watch for opportunities to make those activities safer and easier. While daily responsibilities can provide your loved one with a healthy sense of continuity and control, the early stage is the best time to put together a daily care plan for the months to come. Now is also a good time to assemble a list of bank accounts, balances, debts, passwords, and other essential info they’ll help mitigate money problems in the disease’s later stages.
Most importantly of all, look for ways to keep your loved one engaged with the people and activities that bring meaning and purpose to their life. Research shows that active engagement in meaningful activities like reading, gardening, playing music, solving puzzles and chatting with friends can slow the progress of dementia by up to five years, while providing a much richer quality of life for the person you’re caring for.
During the early stages of the disease, especially, clear communication is key. The person in your care is unlikely to respond well to being treated like a child — so, while it’s not always easy, take the time to talk openly and patiently about your reasons for making changes around the house, and taking an increasingly active role in your loved one’s life.
Make it clear that you’re motivated by a desire to create a safe, comfortable environment for your loved one, and they’ll be much more likely to agree with your decisions. And when things get tense, remember what’s really important: your goal is to make the most of the time you have left with the person you love — and every change that supports that goal is ultimately a change for the better.