One of my favorite patients, a widow in her 70′s, remarried 5 years ago to a wonderful man. They were both in good health and for a few years had a ball. They traveled, kept up with kids and grand-kids, and absolutely enjoyed one another.
Things were going well until she started showing signs of dementia a year ago. The husband was saddened but determined to take care of her like a godly man should. This past week he came into my medical office and said, “Let me tell you about the worst week of my life.”
His dear wife, in a confused state, had flooded their bathroom two times. She had fled their house late at night and he couldn’t find here until a neighbor called the police. She had acutely worsened and he knew that the time had come to place her in a memory care facility.
I met that day with the patient’s husband, son and daughter-in-law to discuss and plan. We made sure there was nothing going on such as a lung infection that could cause a sudden worsening of her condition. We talked about her needs and what kind of facility would meet those needs. All the while, the patient listened, partially understanding that her family might be moving her to a facility, and expressed through tears that she wanted to stay at home. It was a difficult and emotionally taxing hour.
I am writing about this episode to highlight one of the most difficult aspects of dementia care, the moment when the family realizes they can no longer care for their loved one at home. Leading up to that point they are able to cope and manage. After that moment, they have resigned themselves to the new situation and are settled in. But that watershed event is when familes experience the emotional agony.
It is important for hospice providers to understand what families have been through when caring for end-stage dementia. That moment of truth may have occurred years prior, but it still stings. It informs how the family thinks and feels about their loved one, the care they are receiving, and the input that hospice brings. I’ve learned from our new spiritual care coordinator, Keith Colley, that pre-bereavement can heal some of these wounds before the patient passes.
Dementia is such an destructive disease. It wreaks havoc on the patient’s mind and family. It separates loved ones. It creates new areas of pain. But in hospice we have a chance to put salve on those wounds and to help families begin healing.
That husband has been a prince, never leaving her side, choosing a facility close to their house so he can be there daily, and paying for her care. Isn’t that the kind of love we are all looking for? Jesus, who is familiar with suffering and death, said, “Come to me you who are weary and heavy laden and I will give you rest.”