The word Alzheimer’s had somehow become a part of every sentence when anyone asked about my dad. It is an awful, silent killer. It crept up slowly, yet struck all too quickly and stole my dad’s charming personality. At first, I didn’t want to believe anything was wrong. I told myself he was just getting forgetful as many people are once they get to a certain age. It started off as light family jokes when he forgot why he walked in the room. Then each visit, each family gathering, he began to change. It was heartbreaking to watch. Before you know it, your parent has drastically changed before your eyes. The person they used to be has drifted away like a ship slowly sailing away toward the horizon at sea. Who you see now is a stranger.
This was the reality we were faced with for my very charming, fun-loving dad. His behavior changed. He started to forget me. I was crushed. I was mad at him and the disease. It was not his fault, but the saddest part of being on the outside of Alzheimer’s is seeing the person you love fade away. His smile used to light up a room. Now he had no facial reactions of any kind. I needed a way to cope and say goodbye to the man he was and learn to embrace the man he was becoming. That was the hardest part. Through my experience with this awful disease, I discovered 10 things that, at least for me, helped with managing having a loved one that was still there…but not the same person.
Say goodbye to the person they used to be.
This one may not be the most popular suggestion, but it definitely helped me early on in the progression of his disease. It allowed me to embrace the new person he was becoming and let go of my unfair expectations of who my dad used to be. He was different now, and I needed to change to accept who my new dad was.
Celebrate them and all they were.
This one is important! They need this because it is their legacy. Alzheimer’s can be a long, hard disease and your loved one wants to be remembered for who they were – not who they are becoming. It’s our job to celebrate the amazing person they were before this. So, tell the stories, show the videos, and plaster pictures of that person all over.
Tell stories and embrace the new person.
In my experience talking and remembering may be hard but listening is something people with Alzheimer’s can do well. Just remember that they may disagree with the stories and get upset. Just be kind and understand that you are walking alongside them in this journey. So, tell new stories and old ones too.
Put pictures everywhere of who they were, important people in their life, and label them. People want to be remembered for who they used to be and the amazing things they have accomplished over their life.
Give them tools to succeed.
Picture books can help to illustrate everyday tasks. This can also help them understand what to expect each day. Having a picture of their day gives comfort. Also, a very large digital wall clock can really help too. Some good models will help remind them what day and time it is, as well as whether it is morning or night. This can become very hard for them to keep track of as things progress.
Remember they are still in there.
Talk to them and include them in your conversation or event. One of my favorite memories of my dad is when he walked me down the aisle. He couldn’t talk because of the disease but he was in there! Right before we walked down, he held my hand, looked me in the eyes and he had the biggest tears streaming down his face. He couldn’t stop crying. I knew exactly what he was saying even though he didn’t say a word. He had been non-verbal for years. But at that moment we connected on a deeper level than I could have ever hoped for. It meant the world to me.
Singing and music can really help.
My dad loved to whistle. Not your basic whistle but an honest to God beautiful, musical whistle that sounded like it could have been in an orchestra. So, music was something that would open him up and give him a spark we all missed seeing. Play music often, dance, and sing to them because it makes a huge difference.
Remember the caregiver and help them as much as possible!
Bring meals, help clean and watch the parent being taken care of so they can have a much-needed break. In my dad’s case, my stepmom did all the heavy lifting. She took care of his every need. She hand-fed him, changed him when he was unable to use the restroom independently, and bathed him every day. She took care of every need he could possibly have. To do this alone, while watching your loved one’s personality slip away from you is the hardest thing a person could go through. She was losing the love of her life and best friend – and ultimately had to quit work and become a full-time caregiver. The burden is so heavy, and while I know she would do it all over again to have some more time with him, the weight is too heavy for someone to do alone. My suggestion is to jump in and help the caregiver. They won’t ask for help but they need it. If you can’t help with time, then help with money, or offer to run errands or stay with your parent so the caregiver can have a break. She never had time to process what was happening. I am so grateful for her and the care she gave my dad.
Ask for permission and offer respect.
They can hear everything that is happening around them. They are still a person that deserves respect. They can’t help what is happening to them so ask permission before you take them somewhere or do something with their body.
Save any and all voicemails they leave you because when they are gone you will want to hear their voice.
This one is a big one! If you know your parent or loved one has been diagnosed with Alzheimer’s then start recording everything. Have them call your phone and say a few important things. I love you, I’m proud of you or sing Happy Birthday. Whatever you may need to hear once they are gone. You will never regret you did this. This was something I could not get for my dad as he lost his speaking ability early and before we all had our fancy phones. What I do have is a cassette tape of him speaking to me and it is a sound I will cherish forever.
You are not alone in this journey. All of us on the outside of this awful disease are the ones left behind. Remember the good times. Their voice and smile will be with you always. I encourage you to embrace some of my suggestions quickly. I wish I had a list like this when my dad was on this path because I could’ve been a better daughter through this process. So start now. You will be thankful you did.