If the daily news doesn’t affect us personally, we tend to pass over it, don’t we? This past week, however, one bit of news that you might have missed leaped off the page and set me to pondering for days. It was about retired Supreme Court Justice, Sandra Day O’Connor, who retired two years ago at age 75 in order to take care of her husband, who was diagnosed with Alzheimer’s 17 years ago.
A year and a half ago, John had to be moved to an assisted living center in Phoenix, which was a heart-breaking decision for the family. As often happens, John was very unhappy at first, which made the move even more painful. Amazingly, John soon developed a relationship with another woman in the facility, and son Scott said it was like he was a teenager in love. Now, when the family visits, John, who can recognize but no longer call his family by name, hold hands with his girlfriend. Sandra has said publicly that she is thrilled that he is happy.
My goodness! To give thanks in all circumstances, even if a husband with Alzheimer’s has a girlfriend. I don’t know if I could respond with such grace if I were in Sandra Day O’Connor’s shoes. I am grateful, however, that O’Connor has drawn attention to the unique and difficult decisions that families of Alzheimer’s patients have to make. An official from the assisted living center was quoted as saying that Alzheimer’s patients need companionship and intimacy as much as anyone else and, at times, develop romantic relationships with other patients.
This story was of great interest to me because my mother has Alzheimer’s, and my father is the primary caregiver. They are both 80 years old. My dad wrote me a letter a while back saying that he loves my mother more now than he ever has and has determined to care for her in their home as long as possible. She took care of his needs for so many years; now it’s his turn. It’s tough, though. No doubt about it. I have already been home four times in the past year to assist Mom and Dad and will be flying to Pennsylvania tomorrow for Thanksgiving. I am very grateful for my three siblings and their spouses, who live nearby and are an immense help.
My mother can no longer perform many of the ordinary tasks of living. She cannot drive, pay bills, cook, clean, read a book, make a phone call, or take her own medications. We can only leave her alone for a few hours. She asks the same question every 20 seconds or so. My mom tries so hard to make her brain work to remember, but she can’t do it. The ability to process and store information is no longer there.
Caregivers for Alzheimer’s patients are under great stress. My two brothers and sister and I each took care of my mom for several days last summer so my dad could go on a fishing trip. We all commented how exhausting it was, even for just a few days. We have immense respect for our father and for all Alzheimer’s caregivers.
Our family members have read Joanne Koenig Coste’s book, Learning to Speak Alzheimer’s. The book’s five principles of caregiving are helping us to empower Mom to live at her optimal level of functioning and make her feel successful in what she can do:
- Make the physical environment work
- Know that communication remains possible
- Focus on remaining skills and offer as many choices as are reasonable
- Live in the patient’s world: accepts behavioral changes and join them in their time and place
- Enrich and honor the patient’s life
Alzheimer’s is a frightening disease. It’s a huge loss, and denial is common. It takes time to admit and live with the truth. Most important, however, is to remember that Alzheimer’s patients are still human and deserve to be respected and honored as children of God. Alzheimer’s patients can still offer much to the world. My mother enjoys life and has a positive attitude most of the time. I am always amused when I am with my mother in church. As an English major and former church librarian, she can still find all the typos in the church bulletin and circles them proudly!
You probably have Alzheimer’s patients sitting in the pews every Sunday as well. If you don’t, it may be because caregivers feel uncomfortable with the sometimes odd and even disruptive behavior of their loved ones. Like you and me, people with Alzheimer’s need what the church has to offer. They need to be spiritually fed, even if they can no longer articulate their faith. They need to participate as best they can. They need to feel cared for. They need community. They, too, want to make a difference. When Alzheimers’s patients can no longer communicate, they can often still sing the hymns of their childhood and recite the Lord’s Prayer.
- Do you welcome people with Alzheimer’s and make your church a safe place for them?
- Knowing that 30% of all caregivers die before the people for whom they care, does your pastoral team check in regularly with caregivers? Do you offer occasional relief?
- Do you encourage people with Alzheimer’s to volunteer in suitable places?
- Do you interact with them as you would with other people?
- Do you accept them for who they are now rather than expect them to be who they once were?
- Do you offer an Alzheimer’s support group?
On Thanksgiving Day, I am going to thank God for my mother, who raised me to be a faithful Christian and a responsible citizen. Life comes full circle. As she took care of me as a child, so I will help to take care of her. May God bless all people with Alzheimer’s and their caregivers, for they, especially, will inherit the kingdom of God.