One Couple's Story: Til Death Do Us Part
We appreciate the opportunity to help many wonderful clients and families. We highlight some of their special stories in our blog, so that others might benefit as they experience similar challenges and so that we might celebrate their lives and what they have contributed to ours. Here, Aging Wisely’s long-time care manager, Julie Scott
, shares the story of her clients Dorothy and Ken:
Dorothy and Ken dressed up the day we met; and Ken was still grumbling about having to take a shower for a woman he had never met. Dorothy had read the ad in the Senior Living Guide for Aging Wisely, and decided that she needed help. After taking care of her husband for 13 years with an Alzheimer’s diagnosis, Dorothy really needed help. They had no children, did not live close to her sister or his brother.
Dorothy stoically told her story, and outlined her daily routine, which started at 5:00 a.m. and ended long after Ken went to bed at night. When she finished, I felt as tired as she looked. I asked her what she needed the most, and she was at a loss for words. “Just help,” she said. As I listed the ways that I could help, she discounted each one with a “No, that’s something I do for Ken,” or “I don’t think that would help me.” When I had exhausted my list of ways that I could help, and she had not jumped at any of them, I asked her if I was misunderstanding what she had been telling me. She replied that all of the things that I had listed were “hers” to do for him, based on their wedding vows. I thought for a moment, and asked her to recount her vows, as best she could. After she told me her recollection, I asked her where in the vows it said that she had to do all of those things by herself. She began to cry, which then upset Ken. I did not realize until months later the impact of those words on her. She agreed to another meeting, which began the formal assessment of their situation. Dorothy hugged me, and said thank you. Ken stated that his pants were wet, and needed to be changed. And so the routine of Dorothy’s day continued.
Over the next few months we got to know each other better; the assessment was completed and Dorothy again declined each and every recommendation. She really enjoyed the visits though, and seemed to just need validation and a place to vent. She remained apologetic over not giving me “things” to do, and was ever so grateful at the end of each visit. As time progressed, Dorothy agreed to recommendations that were removed from the caregiving role; new attorney was found, new legal documents were signed, reoccurring bills were put on automatic payment, etc. The toll on Dorothy became increasing apparent, as her days did not change; and Ken’s dementia was becoming worse, as his physical health also began to decline.
After a particularly difficult weekend, Dorothy called to say she had decided it was time. Time to move from their condo into an ALF, time to downsize and get help for Ken, and could they move within the month? We made plans to visit two ALFs in their vicinity. We toured and ate lunch at both, and Dorothy quickly chose a lovely apartment at Balmoral. Their condo was sold quickly, and I assisted in the move arrangements. Dorothy and Ken settled in their new place quickly, although neither was interested in the activities or group get-togethers. Dorothy gave up the housekeeping, laundry, cooking, cleaning and shopping, and focused on her responsibilities as she saw them: Ken. She continued to bathe, dress and clean him between accidents. She got little rest for herself.
Over the next few years, Dorothy began to relinquish some of the caregiving tasks, slowly and reluctantly. Dorothy was the first to tell you that she needed the control and needed to feel needed. Life was getting pretty comfortable for Dorothy and Ken as she finally began to trust that Ken was okay with others helping him, and that it did not diminish her role as his spouse. She began to go out, began to put on weight, and began to enjoy herself. She looked forward to my bringing seasonal things to decorate her door and entry shelf. She looked forward to my company on holidays, in the evenings, even for the briefest of moments on those special days. These were the times I looked forward to most; the times that I went “off the clock”, when she wasn’t expecting me. It was easy to visit Dorothy and Ken, as the proximity with one of my own family members made it easy to squeeze in these moments. “Just stopped in to bring you these cookies,” “Just came by to give you this book; I thought it was a great mystery and I know you will like it”, and most importantly to Dorothy, “Just came by to say hi and give you a hug.” These were the moments that brought Dorothy joy, and frequently brought her to tears.
Times changed again, and Ken was diagnosed with cancer; and given 6 months. 22 months later, Hospice was still involved and Ken was still with Dorothy. Her desire to keep him at home with her was tremendous, and her reserves for him without limits. We increased help, we increased services, and we negotiated with the facility for help without additional costs, as money was getting to be a worry for Dorothy. Dorothy was with Ken when he died in his bed, at home. I sat with her until he was bathed, dressed and picked up from the funeral home. Dorothy’s needs at this time became logistical, and methodical. She wanted me to make sure that he was really dead, even though Hospice had already certified his passing. She wanted me to check the gurney from the funeral home, she wanted me to make sure his “seat belt” was tight so that he didn’t fall off; she wanted me to make sure that the funeral home knew just what to do. I felt very strange doing all of these tasks in front of the representative from the funeral home, but if it comforted her, then that was all that mattered. There was no memorial, so to speak. She asked me to view the inurnment, and decided that day that she would also attend.
Dorothy spent several weeks grieving, and then decided it was time to do things that she had planned to do, wanted to do, and was looking forward to doing. We shopped without a deadline to be home, she laughed and ate cheesecake for breakfast, on occasion. She began to go to a few activities, and began spending time with a few women peers at the facility. One Saturday, a month after Ken’s death, she became sick and was taken to the hospital. She was hopeful that she would be there only a few days. Her doctor called me into his office on the following Tuesday, and told me that he did not know how to tell her she had a very aggressive cancer. He had been her doctor for the past 26 years; she and Ken had been some of his very first patients in his practice. We agreed that I would go with him to tell her, as he was going to discharge her home that day with Hospice. Upon hearing the diagnosis, Dorothy looked at me and said, “I am so disappointed. I guess they aren’t able to take care of Ken up there after all.” She then asked if I thought she would make it to their anniversary date, which was one month away. I did not tell her that the doctor gave her only a week to a week and a half. I arranged for the same Hospice team that had Ken, to follow Dorothy as well.
The next several weeks were difficult, to say the least. Dorothy’s needs became increasingly more demanding, and she wanted no one to do anything for her. She did not want them to bathe, dress or change her. She did not want them to clean or straighten her room. She asked me to come every day, and asked me to do some of these chores. Daily, I sat with her and chatted, listened, and followed her every direction. Dorothy had provided a “list” for me nearly every visit over the past 3 ½ years, and even in her dying days Dorothy provided me with lists. Daily, she asked the date, and thought about their upcoming anniversary. Daily, I gave her a card, and left some tucked around the apartment for her to find when she moved from the chair to the bed, from the bed to the bathroom, etc. She would have the staff set them up on her dresser, where she could see them from her bed. Daily, she would ask about the status of Ken’s life insurance, about the mail, and the loose ends with regards to Ken’s death. She began to provide me with lists that included “Make sure that I am really dead.” Make sure that they don’t cover me up with that blanket while I am still breathing.” “Make sure that I don’t fall off of the stretcher.” I would listen, acknowledge her requests, and assure her that everything was taken care of. After saying this to her one day, Dorothy looked at me and stated, “No, it isn’t. You haven’t cleaned out the refrigerator.” I cleaned out the refrigerator, and the cabinets. She wanted the furniture donated and out of the apartment, so that it wasn’t a burden after her death. I pushed things aside so that they were out of her line of vision from the bed.
In her last week, Dorothy wanted a few things done on her list. She wanted Ken’s military flag with her in the vault, she wanted a picture of Ken in their vault, and she wanted the cards that I had been bringing her in the vault. I asked her why she wanted them, and she replied that she wanted them with her always. I told her that I wanted a picture of her and Ken; she said to take any one I wanted. I told her that I wanted her favorite of the two of them, and she directed me to their wedding photo. I gave her an anniversary card, two days early. I told her that she had spent 53 years with Ken on their anniversary, and that I thought she should spend the 54th one with him too. She did not open her eyes, but she did squeeze my hand. Dorothy died later that afternoon. The Hospice nurse, who had been privy to Dorothy’s fears after Ken died, watched and assisted with the last list that Dorothy had given me.
I had Ken’s military flag cremated with her, and I was the only one present at Dorothy’s inurnment. I placed Ken’s picture and the bundle of cards inside before it was sealed. For weeks after Dorothy’s death, I found myself 3-4 times a week, halfway down the hall at Balmoral before I remembered that she was not there for me to visit. It was a strange feeling, and left me at a loss for where to put those feelings. I still miss Dorothy, and Ken.
To be truthful, I will always miss Dorothy.
The professional side of being a care manager is in the “doing” for our clients, and the personal side of being a care manager is in, well, “doing” for our clients. It may be a business relationship, but the reality of the matter is that many clients become so much more to us. The personal connections that are made, the “inside” jokes, the little quirks that we successfully have to negotiate around are the perks that come with meeting, knowing and growing with our clients. Some of our cases aren’t this dramatic, or this engaging. But each client that comes to us, either of their own accord, or through their family, imprints on each of us a real person, with a real story, with real needs. The value of each path we cross stays with all of us.