Alzheimer’s – a single word that can strike fear in our very bones. It might have started with the little things, like forgetting a pot on the stove for the third time in two weeks, or not realizing you didn’t pay the electricity bill until they’ve sent you a notice. Maybe you misplaced your keys too many times, forgotten too many birthdays, or gotten lost in places that used to be familiar. When you went to see your doctor, the fear might have already been there, or maybe it caught you by surprise. Alzheimer’s disease. This can’t be happening, not now, not to you. From numbness, to rage, to grief, there’s a dawning realization that your life will start changing. But that terror you feel, that helpless anger, isn’t who you are. If you’ve recently been diagnosed, dealing with this might seem overwhelming. That’s why we’re here for you, to give some tips and remind you that you’re not alone.
Asking the hard questions
Anyone who is dealing with a serious disease of any kind faces a great challenge when it comes to finding ways to accept it. What will change? Will I forget who I am? How much time until that happens? And the hardest one of all, the one that haunts us at night – will I lose my dignity? For the first three questions the answer varies. No patient is the same and for some the symptoms might advance over a very long period of time, while for the others, they may develop faster. But for the last question, the answer is easy and obvious – no. Things will be different, but no disease in this world can change who you are inside. Your heart and your soul are your own, the mark you’ve left on this world isn’t something that can easily be erased. Yes, you will end up needing help with some very basic things, you will need support, but that? That is human, and that is normal, and your dignity is about how you treat others and how you deal with things, and nothing can change the essence of who you are. Your memories will fade, but you’ve been here, in this world, and that means more than you think.
Relying on your loved ones
The time after the diagnosis is going to be critical for you. The burning, impotent rage inside you might lead you to do something you will later regret, or you might fall victim to depression. To avoid this, you have to talk to your family, your friends. You need them right now, you need comfort and kindness, and they need to know what’s going on so they can help you to the best of their ability. Most Alzheimer’s patients are afraid of becoming a burden to their families, and that’s why communication is important. Your family must be aware of the situation so they could decide if they can give you proper care or rely on a nurse or a professional caretaker to help them out. If you want to be prepared, checking out sites like InfoCare is a good idea, because they have information and databases of care providers available. You might be able to live alone in the beginning, but you will need more help as the symptoms progress. Always stay in touch with your loved ones and build a support system around you to help you have a normal life.
Taking one step at a time
You will need to think about things like your job, your bills, your personal life and how will Alzheimer’s affect it. You will need to find solutions, but you don’t have to do it all right away. Take some time to breathe deeply and think, take time to grieve and deal with your emotions. Talk to people and do the things you love. Keeping up with your normal routines is important, so don’t surrender to depression. You still have time left, you still have your skills and your hobbies and the world around you will keep going. In that cloud of misery that you’re fighting, there are still many achingly beautiful things to be found.
Did you know that Terry Pratchett suffered from Alzheimer’s? Did you know Maurice Ravel did? These, and many other great and famous people had this disease and yet do we remember them by it? No, we read Discworld novels and laugh our bums off, we sit and listen to Bolero and weep at its beauty. You are not less of a person because you’re sick. You are not worthless. You are not a burden. You can still create and you can still love, and your life can still be filled with laughter and music and happy moments. Focus on the present and start writing a journal, share your soul with us so we may enjoy your bravery. Take experiences as they come and live in the present.