The Purple PRoject team participated in the Walk to END Alzheimer’s last weekend. It was a great day to raise awareness and raise funds in the fight against Alzheimer’s. It was also a personal time of reflection for me. It’s been a year since I lost my dad. It still wasn’t easy having to pick up that purple flower, which represents losing someone to Alzheimer’s. But until a cure is found, if I could give advice to those who have loved ones living with Alzheimer’s disease, it would be to “be willing.”
Be willing to listen. Be willing to ignore. Be willing to forgive. Be willing to go. Be willing.
Be willing to listen. Listening is one of the simplest expressions of love. My dad always liked to talk – my goodness, he even turned it into a profession when he decided to go to auctioneer school after retiring from Western Illinois University, and he was good at it too. Even as the Alzheimer’s progressed, he still enjoyed talking as long as someone was willing to listen. That willingness includes listening to the same stories over and over again and to stories that don’t even make sense. I walked with Dad one evening as he pointed out all the items that were about to be auctioned off; room after room of furnishings were going to be sold, according to him. We enjoyed talking about the “upcoming sale” and how much things would go for. Be willing to listen.
Be willing to ignore. With the listening comes the need to ignore. Facts are no longer needed, and if you are going to enjoy your time together, you have to be willing to ignore the absurdity and sometimes the hurtful comments that your loved ones might say. The day my dad reached out and took my mom’s arm, the woman he had been married to for 58 years, and asked her to leave “his” house because he didn’t know who she was, and he didn’t want her there was probably one of the hardest days of her life. Dad once told me that she (my mom) was an old girlfriend that was trying to boot his wife out…but he was going to have none of that! He said, “She’s a nice woman, and I don’t want to hurt her feelings, but I’m a married man.” As hard as it may be at times, you have to learn to ignore some of the things that are said, knowing that they are not coming from the heart but rather a mind that no longer works correctly. Be willing to ignore.
Be willing to forgive. This may be needed for the things said and done under the ravages of the disease, but it may also be needed for things done long before Alzheimer’s became a part of your world. I’m the first to admit, I didn’t always see eye to eye with my dad – and that’s putting it mildly! But somehow, not even consciously, all of that dissipated as he aged and even more so when I began to see the signs of Alzheimer’s. Forgiveness is what you need to give, but really, it is a gift to yourself. Forgiveness helps you heal. Without forgiveness, the compassion, which I think you must have to make this journey, would not come easily. Without forgiveness, it is difficult to go with the one you love to the world in which they now live: the Alzheimer’s world. Be willing to forgive.
Be willing to go. No suitcase needed. No passport required, and yet, the journey is a long one. When you love someone who is living with Alzheimer’s, you have to be willing to go with them to their world because, sadly, the disease has already taken them out of yours. But if you are willing to go, you can still have so much fun with each other. I truly enjoyed my time with Dad. I remember one night sitting at the table and laughing – and I’m talking about good ole’ belly laughter! Some of the things he was saying were just crazy – maybe even a bit inappropriate, but wow, we were having fun together! I honestly was happy, and he was too. I think that is the biggest misconception surrounding Alzheimer’s; that people living with the disease, people caring for those living with the disease, just have to be living this sad, horrible existence. It’s just not true. Sure there are tough times, but don’t those times come to all of us? If you are willing to go with them into their world, there are still good times to be had. And for me, memories to be made and cherished. I was making memories with Dad even though I knew they wouldn’t be his memories, but I certainly count them as some of my most treasured memories now.
So until a cure: be willing.