Some topics you hope to never need to know too much about. They are difficult and sad. Most of us are juggling very busy lives in the best of times.
But bad luck, accidents, political upheaval, war and disease can burst in without a warning and disrupt what order and peace we may have been able to achieve. So many bad things can happen that I still feel blessed and thankful to have led a relatively easy and comfortable life.
But this past winter, amid work chaos and struggling to get around in the snow, my father was diagnosed with Alzheimer’s. It has been a very difficult adjustment for me and my family. We continue to adjust and adapt.
It’s a process and a journey. Definitely not one that any of us would have chosen or predicted. Especially since my brother, my only sibling, has developmental delay and other physical issues.
There is not a lot of solace with this illness. Alzheimer’s is a cruel disease. I’ve struggled to learn how to continue communicating with my Dad. I feel helpless and lost sometimes.
He is in very early stages and still knows who I am and is sometimes very much himself. Except for not really. We can’t talk quite the same way we used to and I have to be careful to try and not upset him.
I was looking for books to read and found Inside Alzheimer’s by Nancy Pearce. It is a beautifully written, inspiring and uplifting book. I highly recommend it for anyone looking for answers about dealing with a loved one who has dementia. The tagline of the book is How to Hear and Honor Connections with a Person who has Dementia. Below is an excerpt from her website.
There is a person inside Alzheimer’s and any of the other dementias—a person, just like the rest of us. The person, no matter how progressed the dementia, maintains the ability to feel the joy and satisfaction that comes from being in the rhythm of human connection with others. The disease does, however, diminish that person’s ability to reach out in familiar ways which poses challenges for those of us who want to stay connected.
For over 25 years, I interacted with persons who have dementia and paid attention—looking hard at each interaction for the ways in which she (or he) had been affected by me, by others, and by the world even as she progressed through the disease. Each person guided me during all of the connections and disconnections toward understanding that connection is not so much about knowing what to do or say as it is about learning the ways in which we can “be with” the person in her world so that we can allow her strengths to emerge. Being in the moment and engaging the person with dementia in her world offers constant surprises and gifts of wisdom, insight and compassion—each of us moves beyond isolation and hopelessness; each of us empowered to move forward, to grow.
When I started reading this book I thought I would feel even worse than I already did, but more informed. Instead, I felt uplifted and confident that there would still be some good times ahead. I really needed to believe this, because I didn’t know how to cope otherwise.
The author writes about interactions that she has had over the years working with Alzheimer’s patients. She showed a lot of humor and joy along with the difficulty. I so needed to hear this.
Since my father’s diagnosis, we still have many good times together. He still has his deep intelligence, sharp wit and love of good food. Sometimes I feel like he is even more open and loving towards me and my brother now than before. Like a barrier has come down.
The future scares me, so I try not to dwell on it and focus on the good that exists now. The present really is a gift.
My mother had Alzheimer’s so I know what you are going through, it is a devastating experience but there are also positive moments. When I reached the stage when I could accept that she was ill, I found that I still could communicate with her on a purely emotional level and that turned the whole thing around somehow. Even when she stopped talking I loved being with her. Sure it was hard to see her so changed but it was still her and I still loved her, despite the illness. Anyway, my thoughts are with you, huge hug!
Ilva – I’m so sorry your mom has suffered through this illness as well. Thank you for sharing your experience. I think it’s important for us to talk about this, so that we can support each other and people will know they are not alone. And to know that we can still enjoy being with our loved one. Not to give up on them and shut them out. As long as they are alive, they are still here for us to love. Thanks for the huge hug! Here’s a big hug right back to you! 😀
I’m sorry, Lisa. This is a heartrending challenge. It is one that I understand.
Maybe this is a situation in which you can let food do some of the talking for you. Sharing food can share our love and provide comfort and happiness without having to say much more at all. It feeds us in so many ways, as you know.
As you struggle to be patient with your father, please remember to be patient with yourself as well. XO
Nance – Thank you so much. We do still enjoy many family meals!