What No One Tells You About Alzheimer’s Disease

I imagine by this point in your life, you’ve heard of the big A — Alzheimer’s Disease. You’ve seen it in movies, books, articles, and during yearly fundraising campaigns. It’s one of those diseases that happens to other people’s families, other people’s friends. You read about the research or new findings when it circulates the media. You consider yourself knowledgeable enough on the topic.

Then a loved one is diagnosed and you go into this adventure thinking that you are prepared. Just in case, you listen to doctors who give you the quick run down of this progressive illness. You read all the pamphlets and online material that you can find. You reach out to your local Alzheimer society to stock up on knowledge to take you through the next few rollercoaster years. You read books written by other’s who are on or have been on this adventure. You do everything you can to arm and prepare yourself for whatever may happen.

What no one tells you is…

How you will feel when you see that initial change in your loved one. I’m not talking about putting the milk away in the cupboard or, while dangerous, leaving the stove on. I’m talking about that moment when you are spending time with your loved one and something just doesn’t feel quite “normal”.

How you will feel when they start to forget all the wonderful things you’ve done together throughout the years or start to think that they did it with someone else.

How you will feel when they lose parts of their personality that you loved and when you start to see more snippets of new personality that you don’t. It’s hard to see your formally compassionate loved one become judgmental and negative.

How it feels when you try to pick up the pieces of how you knew your loved one and hold on so tight, hoping you can squeeze hard enough to keep it all together.

How you feel when you see the rock of your family have a lost look in their eyes as they are having a confused moment. Even when they “return,” that look never leaves your mind.

How you feel when you don’t want to accept the new reality. You’re not in denial, you just painfully yearn for the pre-disease days.

How you will feel when they forget your name…

That’s the worst one. You know that one will come one day. You know that “it’s all part of the disease”. That horrible phrase that people seem to think will help the situation. No one will tell you how you feel like your whole reality has fallen through a mysterious black hole with no direction on how to get out, even if it’s just part of the disease.

What you should know is…

There are fantastic supports out there to emotionally and mentally help you as you deal with the ups and downs of the disease. It’s important to accept that you need support so that you remain healthy. You don’t need to ride this alone. Find support groups through your local Alzheimer’s society or do a quick search on Facebook or Google. If groups aren’t your thing, you can ask a friend if they know of anyone who is or has been on the same adventure. Over half a million Canadian’s are currently living with Alzheimer’s with another 25 000 diagnosed each year. Chances are someone you know can help you get connected.

You will have moments where you will want to get off this ride. You’re angry. You’re frustrated. You’re hurt and have moments of tears asking why is this happening to someone you love. Accept that you feel this way. It’s okay to be angry. It’s okay to be frustrated. It’s okay to hurt and to cry. Find a healthy way to let this out. Journal. Take up running. Blog. Talk. There are people out there who’ve been in your shoes and can be that empathetic shoulder or help you find direction. Though their journey may be different and there’s nothing they can do to “fix” the situation, they are or have walked your path and are aware of the challenges. You’re not alone.

One of the many photos I flip through with my grandmother.

Now is the perfect time to haul out the family photos and revel in all the memories that reemerge. With loosened filters, you may even hear very interesting stories of your loved one’s life that previously were kept hidden. (They really weren’t as innocent as they always let on!!)

If you haven’t already, it’s good to develop a love of old music because, well, who doesn’t like a little Bing or Sinatra. Music from your loved one’s earlier days can activate several areas of the brain involved with language, movement, and memory. Forgotten memories tend to be stirred up. Language loss disappears as your loved one sings along with the lyrics. Enjoy a moment and sing along with them. While you’re at it, throw on some old movies from their younger days and enjoy the days of Old Hollywood. You may not think that they’re “your type” of movie, but seeing the joy on your loved ones face will make it worth a little Garland or Hayworth.

You still have an amazing adventure ahead with your loved one. Take walks. Be affectionate. Talk.

Your loved one is still your loved one.

What you need to remember is…

I’m not going to pretty this up and make it look like an easy adventure with your loved one. You’re learning to accept a new reality and to learn to roll with the twists and turns of the disease. You’ll have days when you feel that everything is under control, only to really discover how Alzheimer’s is ever changing. There are good moments and bad moments, good days and bad days. It’s a rollercoaster ride that gives you no hint at how far it’s ups and downs are or when you’ll be raced around a curve. Don’t fault yourself for feeling overwhelmed or upset or disappointed with what life has dealt your loved one. You’re human. You have feelings too. If someone who has experienced Alzheimer’s in a loved one says that they didn’t ever have those feelings, they’re lying to you. We are all just human with emotions about what we experience. This is where connection with others is valuable.

Most importantly, whether or not your loved one can tell you, your loved one loves you from the deepest part of their heart and, deep down, they are so thankful that you are there.

For more information or to find local resources, visit your local Alzheimer’s society.

What else can you do?

Volunteer with your local Alzheimer Society.

Fundraise.

Be that shoulder when someone else is in need.

Most importantly, no matter the severity of the disease, don’t give up on your loved one.

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store