I finally got the opportunity to watch the recently released film “Still Alice.” I highly recommend this film, as it may give you the ability to understand some of the sheer terror that people face when diagnosed with Alzheimer’s.
As a caregiver, I have worked with clients in various stages of this horrid disease. It was remarkably well displayed in “Still Alice.” The film follows a renowned linguistics professor as she discovers that she has Early Onset Familial Alzheimer’s Disease at just the age of 50. Alice is a very intelligent, hardworking woman whose very life is defined by words, but she slowly starts to lose the ability to speak her beloved words. It follows Alice and her family for a year, and you can see the quick progression of the disease to the point where she can barely talk.
What I love about this film is not only the amazing portrayal that Julianne Moore does, but how they show the range of emotions that the family members have regarding the ‘loss’ of their mother and wife. You have the denial in the husband as well as distancing, the fixer in the son, one daughter wants to remember for her, while the other daughter accepts it and learns to live in it. There is so much emotion displayed in this film; the fear, the acceptance, the fight for a life that is familiar.
At the beginning, when the diagnoses is given, Alice says something to the effect that she wished she had cancer. Cancer is acceptable, people will put on ribbons, run in marathons, and do fundraisers for you. You become a vision of inspiration. But, Alzheimer’s? It’s shameful, something to be hidden. No one wants to discuss it and friends start to fade away.
We fear mortality. We fear the loss of self. And in our fear, we distance ourselves from those who are in the midst of something we dread. Think about it. You know someone with a loved one who is becoming forgetful, they are worried about the outcome of tests and meetings with caretakers. In their stress, they stop contacting you, or whenever you do talk to them, it’s all about the struggles they are going through. You start dreading the phone call. You don’t want to hear about it.
Your grandma starts forgetting the stories she has told you, just 30 minutes ago. You start to ‘correct’ her, but it makes her worried. She stops talking. Because you always say, “You’ve already told me that.”
Dementia and Alzheimer’s are diseases that erase self. They make you forget who you were, who you are now, and who you could have been in the future. It makes you forget the ones you love, and the very ability to make your body work. Some people call it the “Second Childhood.” You become dependent on others for the very things that you once took care of for your children.
Your children take care of your intimate needs as your mind forgets the ability to do certain movements. Your spouse who looked forward to an exciting retirement with you instead has to keep track of your wanderings and pills. You become the dreaded burden you always feared.
Alzheimer’s is a demeaning disease. It’s full of angst and fear. As well as intimate demands.
Alzheimer’s can also be an awakening for your family. Personalities can be changed because of this disease. One of my clients whom numerous people attested to be a very hard woman, became extremely sweet in the midst of the disease. Family members were able to connect to her in a way that they were never able to before. Forgiveness was found as untold stories came to the light.
There can be a beauty in the midst of losing.
“Still Alice” uses a quote from the poet Elizabeth Bishop who said: “The Art of Losing isn’t hard to master: so many things seem filled with the intent to be lost, that their loss is no disaster.” I encourage you to live in the losing with your loved one. Do not put upon them the fear of remembering, by correcting them thirty times a day about the things they forget. Many of them already know they are forgetting. Reminding them does no good.
Follow the meandering stories the best you can. It won’t be easy, but remember, what you are going through is nothing compared to the labyrinth in their minds.
Don’t hide them away as if they are a shameful secret. There will be times that too much stimulation will be hard for them, but hold their hand, read them stories. Engage them in life. Life may look differently for them, but they are still a part of it. Don’t remove them from the time they have among your family.
See things anew through their eyes. Sometimes the simplistic beauty of a flower becomes enrapturing. Looking at each individual petal can take all day, enter into that discovery with them. Maybe this is the time God has given you both to smell the roses they were too busy to see before.
Remember, if you meet one person with Alzheimer’s, you have only met one person with Alzheimer’s. The disease reacts differently to every brain it inhabits. Learn what is best for each person differently. Remember, that they are not the disease, they are people who still dream and hope, acknowledge that desire in them.
I have worked in private homes, adult foster homes, as well as retirement centers. No matter where I go, I see a person who deserves my respect and their dignity. It’s easy to get caught in the ‘doing’ stage and think they are moving too slow, that you have things to do. So you start shoving them into clothes, quickly scrubbing them in the shower, making them eat quicker, etc… When there is a lot to do, it’s easy to see a person as an object and move them where they need to be, rather than see them for a scared nervous man or woman who is uncertain of the next step.
I always think, how would I want to be taken care of? Like no matter what is wrong with me, I’m still someone of worth. I am still me. My self-hood is not contingent on my ability to remember your name or how to put on my pants. If I breathe and my heart still beats, I am still me. Treat me as human and worthy of your respect.
On my good days, I can, you know, almost pass for a normal person. But on my bad days, I feel like I can’t find myself.-Dr. Alice Howland
There will be bad days. But, there will be sweet moments as well. As the disease runs it’s course, and the memories it eats run dry, there will be come a time, a week or a few days before their eyes close for good, that clarity is found. For a few hours, you will have your loved one back. The one you remember from years past. Cherish that time. It is the final goodbye.
Caregiving for someone with Alzheimer’s is a hard job. It’s even harder when that person is someone you know and love. It will make you weep and make you scream. But, if you allow love to guide you through it, it can be very rewarding as well. Find support groups, make your family get involved, and take moments in the day to remember who you are. Take a walk outside, or read a book. Take a breather. You will love them better when you take care of yourself.
I highly recommend the movie “Still Alice.” I just got the book, but I’m sure I will be recommending it as well.