An Open Letter To Alzheimer's Caregivers: Why You're Struggling

Note: I have chosen to modify the title due feedback from readers.

If you’ve been caring for someone with Alzheimer’s or dementia for any length of time, then you know it is the most complicated situation you will ever face.

However, if you’ve just discovered that a loved one has dementia, and you have no prior experience with the disease, then you are very naive about the challenges that lie ahead.

According to the World Alzheimer Report 2015, everyday 27,000 new families (one every 3.2 seconds) discover they are now part of a world epidemic, that not too many people discuss outside of the dementia community.

If you’re reading this article, then you are in a very, very small group of dementia caregivers who are continually educating themselves to discover ways to not fail as a caregiver. That, in itself, is a success.

Your Own Critic

Most caregivers are their own biggest critics, because by nature they are very caring people and want to do the best for their loved one. And I’m sure you are no different, or you wouldn’t have bothered to investigate this article.

It’s likely your loved one was always self sufficient, strong, and often took care of you. If you’re a spouse, you shared duties and supported one another in times of need. But now success fully rests on your shoulders.

If you’re an adult caring for your parent, then your memories are likely endless when you reminisce about how they raised you to be the person you are today. But now the roles are reversed, and it’s up to you to successfully care for them.

Too Much for One Person

No matter your situation, you now have more responsibility than one single person should ever be asked to take on. But no one asked you, nor did you ask to have this responsibility. You accepted the role because you are a dementia warrior.

You fight back. You help people when they are down. You don’t turn your back on someone in need – especially family. So why do you feel like you’re failing?

To say you’re failing makes it seem as though you’re not getting anything right. But I’m sure that’s not the case. In this situation, it’s impossible – no, it’s doubly impossible, to get everything right.

But we tend to focus on our perceived failures rather than the abundance of good we do.

Dynamic Situation

Just when you think you’ve got something figured out, either your loved one’s disease changes, or the rules are changed on you by the medical community, government, or society.

It’s a no win situation. There are too many ups, downs, and twists for any one person, or family for that matter, to handle.

Lack of Support and Infrastructure

You’re continually told to get help and support, but when you try, you discover just how flaky people can be, or how broken our government systems are.

Because governments don’t publicly emphasize the complexity and impact of the disease, the vast majority of society including businesses, employers and neighbors don’t appreciate just how much havoc this disease can place on the caregiver and their family.

It seems everyone is too busy looking down at their phone to simply reach out and open a door for someone, or stop by for a social visit.

So how can we expect them to take the time to learn about a disease that has already taken so much?

It’s not you that’s failing; it’s government and society that is failing you!

So please, give yourself a break and accept that perfection is not possible. Take credit for all of the love and compassion you are providing, because that makes YOU a huge success!

Have you had successes and failures in your role as caregiver? Please share your experiences with us in the comments below.

Mike Good is founder of Together in This an online community helping family members caring for someone with Alzheimer’s or other dementia. Through online classes, short, informative articles and easy-to-use tools, such as the Introductory Guide to Alzheimer’s, he helps you take control and have peace-of-mind you are doing the right things.