It may have taken you months or even years to admit that your parent, partner, or someone else you love has dementia. And once you do, the difficult knowledge can change your life.
The future may look very different from what you had thought. Slowly, in ways big and small, your loved one will fade away. This can stir lots of big feelings, including anger and grief. Make your way through those emotions at your own pace until you get to acceptance.
That’s the first and most important step in the care process. Once they see that you've embraced the diagnosis, your loved one often will do the same. The new normal looks a lot less scary when you can tackle it together.
What to Expect: The Early Stage
You're more of a care partner than a caregiver. Your parent, relative, spouse, or partner can still get dressed, take a shower, and do daily tasks. But they may need help to not miss appointments, remember certain words and names, and know when to take medicine. That can make it hard to know when or how to jump in with a hand.
Use this time to plan and practice. Get on the same page about wills, money, and wishes for long-term care. Focus on independence. For example, if your loved has trouble recalling a word, ask if it’s OK to help instead of blurting out the answer. Work as a team.
People with dementia can spend years in the early stage. Enjoy your loved one as much as possible, but save time for yourself, too.
Self-care tip: This is a good time to educate yourself on dementia and build a community of doctors, online or in-person support groups, therapists, and friends who understand what you're going through. If you plan to be the main caregiver, talk to friends, neighbors, and relatives about pitching in so you don't feel stuck.
What to Expect: The Middle Stage
Dementia doesn’t have clear-cut markers for each stage. But as more nerve cells in the brain become damaged, your loved one’s condition will worsen. This can be emotionally hard on both of you.
For your loved one, it means a loss of identity and independence. Bathing is confusing, as is dressing. They may be physically able but may have forgotten how.
Your loved one may have trouble remembering something that happened recently or follow easy conversations. In this stage, it's normal to forget to eat, lose track of time, and have sleep problems. These changes can leave your loved one frustrated, angry, or depressed.
This is when your role will shift from care partner to caregiver. You'll become the driver, chef, and -- if your loved one starts wandering away from home -- the warden. You'll answer the same questions over and over.
Try to have patience with the situation and yourself. Get help specific to your situation, like the Alzheimer's Association's "Caregiver Stress Check," Alzheimer's Navigator, and free e-learning workshops on everything from how to communicate to legal planning.
It's also up to you to provide daily structure. You may need to spend more time with your loved one and rebalance your own life. It may take some trial and error. It takes effort to design a daily plan. What does your loved one like to do? What can they still do well? Are they "sundowning," feeling more confused or aggressive during the late afternoon and evening? Build in lots of time for what used to be quick tasks, like showers, getting dressed, and eating. Be sure to leave room for spontaneous fun for both of you.
Self-care tip: Carve out some time for daily self-care and at least a 24-hour break once a week or a month. Sometimes it's enough just to take 5 minutes to breathe and remind yourself about all the things you do well.
What to Expect: The Late Stage
How long a person lives after their Alzheimer’s diagnosis depends on lots of things, including their age and health. On average, they live about 4-8 years. But others can live 2 decades or more. Your loved one may spend anywhere from a few weeks to several years in the final stage of the disease. This can be the most challenging phase.
Your loved one probably will have a hard time walking. They may need a wheelchair or may not be able to get out of bed. They also tend to get sick often and take a long time to get better. You or an aide may need to do a lot of lifting. Ask a nurse or physical therapist for tips.
You'll also have to move your loved one often to help their blood circulation, clean them, check for sores, keep track of when they poop and pee, and change adult diapers and bed pans.
Your loved one will need lots of help to eat and swallow. You may need to switch to soft foods, spoon feed them, and make sure they drink enough to avoid dehydration.
At this stage, your loved one may not be able to talk or express what they need. It's still important to connect on whatever level you can. It can be as simple as playing their favorite music, looking at photos, or just sitting quietly together.
With quality of life in mind, this is the time to consider full-time care, such as a nursing home or hospice.
Self-care tip: This stage may feel overwhelming and too sad. Your sense of humor may feel buried under guilt, anger, and grief. But dig it up. Laugh when you can. And share that laugh with your loved one. A little joy goes a long way.