Youtha from DC
What I learned from my cargiving experiences with various loved ones over the last 30 some years, is that the most loving things a caregiver can give are a sensitivity to what the loved one needs, patience, and honesty about what you need so that you can do what you are doing.
I first noticed that my husband, Oliver, was having memory issues about 12 years prior to his sudden death in January. Immediately I sought memory care with a doctor. I was determined to care for him because I love him, loved even the man he was becoming. I had these goals: to keep him at home, to do what I could to reduce his anxiety and confusion, and to honor his humanity and his low tolerance for pain.
Until the last 6 weeks of his life, he was physically independent. I sought to be sensitive to what made him feel happy, included, and loved. Touch is so important. I made sure that he had proper nutrition, appropriate medical care, stimulating activity and interaction, respect for his changing needs, and safety. Early on, the primary bathroom was converted to a walk-in shower. I also learned that music made an important contribution to his well-being and satisfaction. I provided it constantly.
When I came to our house to live, I was not pleased that the doors to the outside all required keys to open and close them, but that proved to be a god-send when it became necessary to restrict any outside access for the safety of my husband. That was a challenge because it interfered with his independence. I also notified the police district here at home and in New Jersey, where we could make brief visits to the children there, so that if he got away from us, the police already had a picture and contact information. This is so important for anyone with memory issues.
I was constantly challenged to recognize changes that were occurring in Oliver, requiring me to figure out changes that needed to be made in our home, our activities, and the way things were being handled. For example, I had to put a lock on the cabinet that contained cleaning supplies. I also made contact with agencies for help with personal support and safety issues in the home. I talked to others that I knew who had been caregivers of Alzheimer’s sufferers and read all I could to understand, realizing that each person is unique in the development of the disease.
My husband was a journalist and political science expert. He was an avid reader of both the daily newspaper and other books and materials. When it became clear that he was no longer able to indulge these passions, I had to try to discern how to keep his mind active and stimulated. In the last six months of his life, I arranged to have him spend about 5 hours a weekday in a senior program that cared for persons with various levels of memory loss and dementia. He found satisfaction and joy in that community. I recommend that to caregivers so that socialization can continue. It also provided time for me to not be focused on his every action and need.
While his welfare and needs were at the center of my life and decision making, I made sure that I took care of myself and my needs. I retired from my positions as administrator and faculty member at a seminary when it became clear that he could no longer be left alone. With the help of our sons and daughter, I was able to continue to teach and preach part-time, something that fed me and gave me satisfaction beyond his care. Family support and clear understanding of the needs of the one who requires care are great helps in meeting care goals. I also did not hide from others that we encountered in our various communities, that he had Alzheimer’s, so that the changes in him would be responded to in terms of that knowledge. I shared with family members what was going on, reminding his relatives that it was evident that memory issues run in Oliver’s family. Our friends were invited, and responded to requests, to spend time with him and give me down time.
My greatest challenge came as his memory issues complicated his care when physical issues emerged in the last six weeks of his life. He was unable to be helpful in sharing what he was experiencing physically. His communication skills were impaired. It appears that he was developing Parkinson’s symptoms and hard to pin down intermittent pain. He became less independent in his hygiene and eating. I employed an aide, who had experience with patients with memory issues, for two hours a day. They bonded well. One morning he announced, “She is alright with me.”
Our blessings were: that he remembered all of us to the end, that I was able to keep him at home for the duration, and that he did not have a long and painful death. He was walking around the morning he died.
I am very grateful that we did not wait until we both had retired to do some traveling that we both loved and wanted to do. We went everywhere we had the opportunity to go and created ways to use work related travel to be together and extend the places we could experience together. As his dementia progressed, we were not able to travel as before because being away from home at night was very disorienting for him. This nighttime disorientation and confusion of time and place was experienced at home, but more manageable there. At least he recognized where he was, even if he thought he should be somewhere else with someone else.
Patient love and understanding are key. Remembering the person you love who is changing but who still needs your love and support makes the caregiving less of a chore and more of a gift of love. He knew that he still loved me.