When your older parent is diagnosed with Alzheimer's, what steps should you take? Suddenly, you find yourself thrust into the role of dementia caregiver, which has to be scary for you.
And it's probably equally frightening for your loved one to face the prospect of developing what unfortunately remains a difficult-to-treat, incurable disease. How can you alleviate your parent's fears and make sure that your mom or dad has the care and support he or she needs?
First, it's important for you both to realize that you're not alone. According to the Alzheimer's Association, a third of American seniors will be diagnosed with dementia at some point. That means there are millions of older people like your parent — many right here in Louisville — and even more millions of caregivers like you.
Connecting with them can help. And there are memory care resources — like here at Episcopal Church Home — that can help your family.
Here are first steps our memory care team recommends your family take after an Alzheimer’s or dementia diagnosis is made.
1. Ask questions and do your research
One of the reasons that Alzheimer's caregiving can be so difficult is that the disease is completely unpredictable. An individual may show only mild symptoms for years, then suddenly experience profound mental status changes. Or, changes may come slowly and steadily.
You and your family will need to understand how to deal with any scenario your loved one's dementia presents. Research. Ask your loved one's doctor or geriatrician as many questions as you can think of. Connect with other caregivers and find out how they have dealt with their loved ones' disease.
Search your local library for reputable sources on Alzheimer's and dementia caregiving. And you can learn quite a bit online, but be cautious about sources.
Stick to information from reputable medical provider organizations, the National Institutes for Health, the Centers for Disease Control and Prevention (CDC) and well-regarded dementia advocacy or dementia support organizations.
Don't trust everything you read in commercial publications, on open-contribution sites like Wikipedia, or on ad-supported websites like WebMD. They're not necessarily presenting objective, vetted information.
And don’t trust unsubstantiated social media posts, or any sites that present dubiously-sourced medical opinions or unsupported assertions. Most importantly, make sure you discuss anything you learn with your parent’s doctor before you act on it.
Remember, when it comes to dementia caregiving, there's no such thing as having all the answers. So, try to become as knowledgeable as possible.
2. Work with your parent to develop a care continuity plan
No matter how much care you may be able to provide at home at first, it's highly likely that your mom or dad's needs will at some point exceed your ability to safely provide for him or her. At that point, he or she will need residential memory care.
It's best to know what provider your parent prefers for his or her care and to have a transition plan in place, if you can, before that move becomes necessary. You and your parent should tour different memory care centers in your area and decide — together — which one best meets your parent's preferences, insurance coverage and out-of-pocket budget.
Make sure, too, that you choose a provider that will never ask your loved one to move if he or she outlives financial resources. Not-for-profit memory care communities, including Episcopal Church Home, often have such policies in place.
3. Make sure that your mom or dad has legally designated powers-of-attorney
As Alzheimer's and dementia progress, they often rob someone of the ability to communicate his or her medical and financial wishes.
If your parent is still in the early stages of dementia, he or she should ask an attorney to draw up documents that designate someone (for example, his or her spouse, you, or someone else in the family) to make such decisions on his or her behalf when such a time comes.
Remember, too, that financial power-of-attorney and medical power-of-attorney are separate roles. One person could conceivably serve as both, but the documentation needs to be there to make it so; it's a lot easier (and cheaper) to iron these details out on the front end, rather than going through a court process later.
Your parent should also update his or her financial will and compose a living will, which is written documentation of his or her care preferences (what lifesaving measures he or she would accept, what facilities he or she will accept care from, etc.).
4. Consider joining a dementia support group
There are many groups here in Louisville — and online — that can help your loved one cope with the negative feelings that are often associated with dementia, and help you with bearing the burden of care.
Episcopal Church Home's caregiver support group meets every third Wednesday at 7:30 p.m. It's free and open to any dementia caregiver in the community, even if their loved ones are not receiving care here.
If that's not convenient for you, the Alzheimer's Association of Greater Kentucky and Southern Indiana publishes a list of other dementia and dementia caregiving support groups in the region. Click here to find one close to your home or work.
ALZConnected is another, online option for you and your loved one. It's an Internet-based support community, moderated by the Alzheimer's Association. Click here to learn more about it.
Have questions? We're here to help!
Download our free Making Sense of Dementia guidebook. In it, our Episcopal Retirement Services and Episcopal Church Home memory care experts discuss all the ins and outs of dementia and dementia caregiving.
And, remember, we're always here to be a resource for your loved one. Should residential memory care become necessary, we'd be honored to provide person-centered care for your family member.
Click here to arrange your tour of our memory care community today.