Guest post by Deborah Roth Grabein
My husband’s Mother, Carol, spent the last five years of her life in a nursing home. She was a fighter in that when she went to the home, she had suffered a severe stroke, had other health issues and was not expected to live. She rallied and was able to live her life in a meaningful way in spite of her illnesses.
Carol suffered from several health problems, including a debilitating disease that eventually would rob her of her memory. A tiny woman but powerful in spirit, Carol regaled us with many stories on our visits which at times, surprised us and at times, entertained us as well as those working and living in the nursing home.
Carol was raised on a dairy farm in Missouri. As her memory declined, she often thought that she was on the farm working. What was fascinating was that she would recall those days with such clarity and description, yet combine those memories with her current living circumstances. One night when my husband was visiting her, he was completing her weekly menus for her meals. She reminded him that she would need a picnic lunch for a few days as she would be working late and would not return home until after the kitchen closed. Initially he reminded her that the dairy farm was in her past and she insisted that it was where she would go each day. He realized quickly that he was not going to win that discussion!
On another occasion, we went to visit her for a day and she introduced us to one of the male nurses, Peter. She was excited, as she had decided that she and Peter were getting married. We were all a bit shocked – as was Peter. But it was so real to her and so we decided there was no harm in sharing her story so we talked about flowers, dresses, churches and cakes. My kids were a bit unsettled but fortunately they participated along with the rest of us.
And perhaps my most favorite of her stories was the night her nurse called my husband at home. His Mom was convinced that she and her friends had been shopping at Walmart and he failed to pick them up and take them home. She was a bit distraught but his calming tone finally convinced her that she indeed was home, in bed and that it was time for her to go to sleep. The power of a good nurse, an understanding and an appreciation of the challenges his Mom faced allowed my husband to bring this dialogue to a good resolution.
I share these examples because anyone who has a family member with any type of dementia understands the challenges of confusing the past, present and future. These patients are easily agitated and frustrated, and have little reasoning ability. It’s working with a two year old in the body of an eighty-five year old.
So, how does one manage a family member who has dementia? As I watched my husband with his Mother, as well as his siblings and their families interact with her, there are several ways I thought they were successful as follows:
1. Pick your battles. Just as with anyone suffering from dementia, there are good and bad days. And as in managing a two year old, you have to decide what the most important battles are. If Carol thought it was Saturday but it was Tuesday, did it really matter? If she wanted to think she was on the dairy farm and wanted a picnic lunch, was there any harm in that? My husband’s family, along with her caregivers, found a rhythm that worked and kept with it. When Carol’s needs changed, so did their approach.
2. Remember, it’s the patient’s reality. As I listened to my husband talk on the phone with his Mom, he listened carefully and then responded to her in a calm, soothing tone. He didn’t tell her that she was wrong or start arguing with her about the lateness of the hour. He simply picked up her story, reminded her that he indeed had picked her up and that she was in bed. If he hadn’t done so, why was she already in bed? He listened, gave her time to process, and then assured her that she was fine. Once the nurse returned to the phone, she confirmed that all was well.
3. Be prepared to pivot. When my husband hung up the phone from speaking with his Mom, I asked him what he would have done if she insisted that she was still at Walmart. He simply said “I would have driven to the nursing home to handle it.” He was prepared that she might not accept his story and would need to see him in-person and he was prepared to do so.
4. Enlist others to help. One Christmas day, my mother-in-law was somewhat aware of the holiday and equally as confused about what day it was. Confusion led to agitation, which led to numerous phone calls to her children demanding a Christmas dinner. She had forgotten that we had all gathered together the prior week for dinner and gifts. After many calls among the siblings and changing plans, we all went to visit, took some leftovers from our respective dinners, and spent a few hours with her.
5. The caregivers are your family. We had an opportunity to provide some special assistance to several of the caregivers and their families. There was no question among any of us that we should do so as they gave so much to the residents of the nursing home. Respect, communication and recognition of appreciation go a long way and in this case, were so meaningful. The caregivers are part of your family and as you would with anyone, an extra “thank you” means the world to them.
6. Lastly, it’s important to remember that this time is for a reason. There are days that it feels like it will last forever, but it doesn’t. Remembering to take time to care for one another and for you is equally as important.