This book is intensely personal. Was it difficult to write?
Yes, at times it was difficult to write, but I felt a great sense of purpose. just before Hob died, I promised him that I would write a book and his voice would be in it. That became like a covenant between us. Also, I felt compelled to write the book. I realized that our background with meditation and the wisdom traditions gave us valuable perspectives which could be helpful to others. I hadn’t seen any books about how spiritual perspectives or practices could help with Alzheimer’s, and that’s what had helped us more than anything. In fact, the book can be helpful for people dealing with any serious illness and no matter what their spiritual tradition.
How did Buddhism and meditation help you and Hob to deal with his illness?
More than anything else, our Buddhist practice and understanding made a profound difference to both of us in handling his decline. Through meditation one learns to find an inner refuge – a place of stillness – in the midst of all the changes and challenges. When we accept how much we can’t control, that everything is impermanent, we can begin to step out of our struggle with life. Meditation helps one develop equanimity and acceptance of whatever comes up, and that is a great help in dealing with the losses and heartbreak of Alzheimer’s. To be realistic, meditation is not a panacea, but it is a tremendous support for which both of us were very grateful.
Title: Ten Thousand Joys and Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s
Author: Olivia Ames Hoblitzelle
Available from: Amazon.co.uk or Amazon.co.uk Kindle Store, and Amazon.com or Amazon.com Kindle Store.
How did Hob’s way of viewing his illness – and the world – help you to accept the situation?
He had a great sense of humor and a wry outlook on life. That helped a lot. Humor breaks the tension of difficult situations. It’s a gift because it shifts perspectives and allows you to laugh. On one level, he couldn’t believe he had this diagnosis. Even quite far along, he kept saying he was going to beat it. On another level, he was totally open and told everyone he had Alzheimer’s, which bowled people over. Many people don’t know there is something wrong with them or else never talk about it. I think Hob’s openness was a great help to him and everyone around him. Certainly it was for me.
Were any positive shifts in your relationship brought about by Hob’s illness?
The most important shift was the deepening of our love for each other. I kept reminding him that we were in this together, and that I would stand by him to the end. I tried to feel into his situation, to walk in his shoes, as the expression goes. Often my heart broke open with compassion and love for him. The frictions of relationship pretty much fen away, and you realize that you’re mainly living with the love. That’s a hidden blessing.
There was also a big shift from his fierce independence to his needing to become more dependent on me. I both accepted that reality and suffered with it. Both of us went through a gradual process of surrender – for him, to the inevitability of his losses; for me, to accept that those losses were “in the natural order of things,” one of my favorite expressions for keeping a balanced perspective.
Being Hob’s primary caregiver, was it difficult to balance his needs with your own? How did you work though frustration?
Keeping one’s balance is a constant issue! Burn out is a huge hazard for all caregivers, so was determined to honor my own needs. I arranged for regular time away to write, meet a friend, be in nature, or just let down. I asked good friends to come and be with Hob, take him for a walk, have lunch with him. I thought about this balance issue a lot and plenty of times I lost it!
When I got worn out and frustrated, I’d do anything to get a tiny respite; go to the garden, just sit and breathe, or be alone for a cup tea. Sometimes I was so exasperated, I’d drive off and in the privacy of my car, I’d shout or roar — any sound that helped to release my pent-up feelings. Sometimes I broke down, and it turned out tears were the most important relief.
Or I’d do exactly the opposite, surprising even myself. I’d choose to move toward him, push through my own feelings, and say, “I need a hug.” That would totally soften the frustration. I came to see that as a kind of spiritual practice, because I was choosing to make a loving gesture instead of collapsing into my own feelings.
How did you and Hob handle tough subjects like death and loss?
We were really fortunate here. First of all, we had our meditation background. Meditation is about acceptance and letting go, invaluable qualities in the face of loss. Then we had both been involved with hospice work where you’re constantly living with issues of death and dying. Finally, we could both talk about the subject of death relatively easily, and we did. Even with some of our closest friends when he was talking about wanting to end his life early.
With Alzheimer’s, loss seems to be a constant reality. Sometimes Hob grieved his losses, but given his nature, he usually made light of them. Other times he simply couldn’t believe what was happening to him As for me, I grieved quietly because my sadness upset him, and why add that to his burdens? Anybody dealing with Alzheimer’s will tell you what a heartbreaking illness it is. I think we do a lot of our grieving as we go along in both little and big hits. It’s important to acknowledge and feel the grief That’s human, after an, and if you don’t, it’s apt to come out in physical symptoms.
What is the ‘doorway practice’ and how did it help you during Hob’s last months?
The doorway practice evolved after he began passing out unexpectedly, and I realized that any of these episodes could be the final one. So whenever I came to the door of the room where he was resting, for example, I’d prepare myself for the fact that he might have died. This inner preparedness came to me naturally. Mysteriously, it wasn’t heavy at au. Rather, it intensified the preciousness of life, of our time together, and yet let me be prepared for whatever might happen. I know it helped me deal with his passing out episodes with equanimity That doorway practice would arise spontaneously. I’d feel remarkably calm determined and strong. Again meditation helped me a lot. One could say meditation is a preparation for crisis management!
What general advice would you offer to someone who is caring for a partner with Alzheimer’s?
- Accept that this is one of the most difficult challenges you’ll ever face.
- When you realize that you’re their lifeline in a dissolving world, every supportive and loving gesture is a gift to them.
- For me, when one of my spiritual teachers suggested that caregiving was an opportunity for me to practice the positive qualities of compassion, patience, generosity, and kindness, it helped give meaning to the humblest of tasks.
- Have compassion for yourself when you feel frustrated, impatient, or angry, because caring for an Alzheimer’s patient is a Herculean task.
- Ask friends and family for help! People want to help out, and there’s a real risk in becoming isolated.
- Know what gives the patient comfort or reassurance. For us, it was always touch, physical closeness, music and beauty.
There are many more answers to this question in the Reflections, Suggestions, and Seed Thoughts at the end of each chapter.
How has your life changed since Hob’s death?
Obviously losing one’s spouse is a heart wrenching loss, but I was determined to continue living as fully as possible. And I did. By writing the book, I was integrating the enormity of the experience and harvesting the insights that come with retrospect- a complex mix of grieving, creativity, and honoring our last chapter together. My greatest wish is that the book continues to be helpful, and hopefully our gift to others facing similar challenges.