From the moment your parent, grandparent or partner receives an Alzheimer’s diagnosis, you’ll have to start making some tough decisions. You may want to care for your loved one at home, rather than move them to an assisted living facility — and while that’s an admirable choice, it’s not always easy to know exactly what you’re committing to.
Caring for a person with Alzheimer’s is going to involve some major changes to your lifestyle. The good news, however, is that many people have walked this path before you — and have often found they share certain experiences in common. Although every Alzheimer’s journey is unique, your fellow caregivers can give you a clearer idea of what to expect along the way.
Here are eight things you need to know about caring for a loved one with Alzheimer — whether you decide to become their main caregiver, hire professional help, or both.
1. Alzheimer’s disease affects each person differently.
2. It’s important to start planning now.
3. Safety will become a major priority.
4. Feelings of grief and loss are natural.
5. Your loved one’s personality may change.
6. Caregiving starts with self-care.
7. This is going to impact your finances.
8. You don’t have to do this alone.
1. Alzheimer’s disease affects each person differently.
The symptoms of Alzheimer’s can vary widely from one person to another. Some people experience near-complete memory loss, while others only become forgetful about recent events. Some lose all motor control in the disease’s later stages, while others continue to enjoy singing, drawing, and even dancing. Some people experience delusions, paranoia, and unpredictable mood swings, while others remain just as kind-hearted as ever. A healthy diet, daily exercise and mental stimulation can all make a major positive difference — and one of the most helpful things you can do for your loved one is simply to keep an open mind.
2. It’s important to start planning now.
When your loved one is still in the early stages of Alzheimer’s, it’s natural to want to keep things the same as before. You may even feel some denial about the situation. That’s normal, too. However, acknowledging the diagnosis will also help your loved one accept it — plus it’ll shift you into planning mode. So if you’re considering an assisted living facility, schedule some appointments. If you’ll be caring for your loved one at home, get up to speed on safety and accessibility modifications. You may also want to look into combining multiple services for more cost-effective personalized care. Plans like these take time, so get started today.
3. Safety will become a major priority.
If you decide to care for your loved one at their home or yours, you’ll need to get serious about potential safety hazards. Bathrooms will need grab bars and anti-slip mats, if you haven’t installed those already. You’ll want to turn down the thermostats on the water system, to prevent your loved one from burning themself. Consider locking away knives and other sharp implements, as well as toxic chemicals. In the disease’s later stages, you’ll also have to clear away tripping hazards, and remove items that could be mistaken for food. And always keep an extra set of keys, so you can reach your loved one in case of an emergency.
4. Feelings of grief and loss are natural.
One of the hardest parts of caring for a loved one with Alzheimer’s is learning to grieve for a person you’re losing while they’re still in your life. Toward the beginning, your loved one may seem like their usual self, aside from some occasional memory lapses. But it’s important to recognize that Azheimer’s affects the brain more severely over time — and just when you think you’ve adapted, you may be caught off-guard when the disease enters a new stage. Losing someone once is awful enough, but Alzheimer’s can make you feel like you’re losing the same person over and over again. That’s a heavy burden to carry, so give yourself time to process your grief — and consider reaching out to a therapist and/or a support group.
5. Your loved one’s personality may change.
While many people with Alzheimer’s remain kind and caring, others can seem to turn into totally different people. For example, your loved one may undergo abrupt mood swings, and become suspicious and aggressive toward friends and family. Some people with later-stage Alzheimer’s can lose their inhibitions, and behave in embarrassing or inappropriate ways; while others experience paranoid delusions and hallucinations. If you notice any of these symptoms, try to keep calm, offer reassurance and compassion, and redirect your loved one’s attention to a more positive activity.
6. Caregiving starts with self-care
To be an effective caregiver, you’ve got to take care of yourself. As in any relationship, you’ll have much more to offer your loved one if you make time to catch up with your friends, and pursue your own hobbies and interests. When you’re with your loved one, remember to take breaks; and do your best to get a full night’s sleep. A healthy diet and exercise will also help keep your mood and energy up, so you give your loved one the care they deserve.
7. This is going to impact your finances.
Whether you move your loved one to a residential facility, care for them yourself, hire an in-home caregiver (or combine several of these options), Alzheimer’s takes a financial toll. If you care for your loved one at home, you’ll need to pay for safety modifications. An in-home caregiver can also be pricey — and while an assisted living facility may be more affordable, the costs of rent, housekeeping, laundry and other services often add up to thousands of dollars per month. The good news is that many financial resources exist to help cover those costs. Depending on your situation, you may also be eligible for tax deductions and credits.
8. You don’t have to do this alone.
Although caregiving can sometimes feel like a lonely journey, it often helps to remind yourself that many other people are going through similar experiences at this very moment. Caregiver support groups meet in cities across the country, and can often connect you with fellow caregivers online. The Alzheimer’s Association even provides a 24/7 helpline number: (800) 272-3900. Some caregivers also find it helpful to talk one-on-one with a personal therapist. Whatever path you choose, remember that no one’s asking you to walk it on your own.
As you plan for the months and years ahead, you’ll have some challenging decisions to make. Still, you’ve already taken the first step by gathering information and considering your options. And now that you’ve got a clearer understanding of what it means to be an Alzheimer’s caregiver, you’ll be better equipped to figure out the most realistic and beneficial solution for you and your loved one.
