A journey can be an actual trip or it can be a pathway to spiritual or emotional growth. It can describe the change of a relationship, the sharing or ending of a marriage, the details of a career, the recognition of a calling. It can describe the faithfulness of God’s work in a life or the dark night of a soul in that same life. It can even describe our paradigm shifts, the changes in thinking and the unlearning we have to do throughout our lives. This post describes a challenging journey into living with Alzheimer’s Disease.

Sundown

It is becoming sundown, and she is becoming restless. Pacing back and forth she is trying to get away from the voices and the people who are pursuing her. There is nothing to convince her that the voices and the people are not real. Sleep won’t come at all.

She has become so fearful she cannot be controlled. Her son comes in the middle of the night, but it makes no difference. Now three days after seeing her own doctor, 911 is called, but because she is not a “danger to herself or others,” the ambulance will not come, and they are advised to take her to the Emergency Room. There after exams and reviewing of history, a little pill is given to them and they are sent home.

Her husband has initiated the paperwork for long-term care in a Memory Unit at a local long-term care facility. He bemoans that it has come to this, but he cannot deal with it anymore.  He hasn’t slept in five days and five nights.

I did not know about this change to admit to long-term care, until a day after her ER visit. My stomach pulls itself into a tight knot, and my heart says, “No, not yet.” There have been no incremental steps in that direction. Their children have been unable to convince their Dad to accept help in the house. I have been unable to convince him to accept Evergreen Daycare. We have known, of course, that she has been declining for some time, but we also know that she is still socially appropriate, that three weeks ago she was singing hymns with us, noticing the fall leaves, and making a joke now and then.

This is the sister who welcomed me back to Michigan, making a point to visit with me weekly.  She would laugh and cry with me and tried to help me make sense of the messy life I had attempted to leave behind. This is the sister that pointed me back to a power higher than I.

Growing up, she was a sickly child, but as she grew, she simply became stronger. This is the girl who hated school but loved the farm and became Dad’s right hand “man” when all the brothers were gone: driving the tractor for plowing, haying, and taking care of the cows and turkeys.

This is the woman who married young and birthed five children. She worked tirelessly to can bushels and bushels of fruits and vegetables to provide for them. Her last child was born with hydrocephaly and spina bifida and lived her life in a wheelchair, needing total care for her entire twenty-nine years of life. This is the mother who cared for that special needs daughter with unending patience, acceptance, compassion, and love. Some would say that she began to change after the death of her daughter.  It was then that her grief in some way put a claim on her that started a downward spiral. Her husband didn’t talk about their daughter’s death. For him it was “over” and they had to get on with life. He dealt with it by busying himself on the farm, and she was left with an empty room that no longer needed her. 

Facing Reality

When I arrived at their home after hearing the news, I felt a desperation that she could not express in the long hard hug she gave me. She sensed a change coming that she did not understand in the same way perhaps that we sense when fall is changing to winter. Wishing for some time alone with her, I told her husband that I would stay for a little while so he could take a walk outside. He was waiting a call regarding their long-term insurance, and the phone rang almost immediately after he had stepped out of the house. My alone time with my sister did not happen that day. When he hung up the phone, I could see how exhausted he was, and that he wasn’t going to accept my offered time.  We prayed with them before we left, and in that prayer we asked for healing.

That day she took the little pill. She slept. The bad people coming after her have disappeared for now. The paperwork for long-term care lies idle on the desk.  She has had a reprieve for a time. But we know, it is only for a time. 

Dr. Verna Benner Carson states in an article, “If you have Alzheimer’s, you will experience adulthood once, but childhood twice,” adding that by the end of the first stage of the disease, the patient will have reverted to being five years old; by the end of the middle stage, two years;  and by the end of their life, a newborn.

My sister is older than I am by nine years. But she now takes my hand to walk, as I once probably took hers. She now speaks of farm life as being a recent event rather than happening more than 60 years ago. Her speech consists of childish phrases. She needs help to order from a restaurant menu. All the care at home is now left for her husband to do.

I wonder about the healing we prayed for that day. I did not anticipate that healing would be evidenced by taking away the dreaded Alzheimer’s disease. Perhaps the healing evidenced in the fact that she is sleeping at night, and that the hallucinations have gone away? Perhaps it is evidenced by the fact that she is still home at this time. Richard Rohr has said, “For a few short years we dance around on the stage of life and have a chance to reflect a little bit of God’s glory.” My sister has been a humble servant, a shining reflection of that glory. Perhaps now in some mysterious way she is living closer to God in her world and His kingdom as she becomes more and more like a little child. And perhaps that is the greatest healing of all.