Margaret shared a home with my family for six or seven years. I was her nurse and she became a household matriarch in our adult family home. On Friday October 16th we prepared for our Second-Friday-of-the-Month potluck and house concert. Margaret was not feeling well enough to eat, but ironed her clothes, spruced herself up and came out looking beautiful in her sparkly grey sweater and jewelry. She loved to look gorgeous for parties.
With great joy she anticipated listening to Mike McConnell, our guest musician on classical guitar, telling us that her Grandfather had loved classical guitar. After the show, she told us he was “Fantastic!” in her lovely English accent.
She had left England as a young woman after marrying an American serviceman. As Glenn—one of our regular volunteers—says, “She may have left England but her accent never left her!”
"I Will Be Okay"
Margaret and I had weathered a number of close brushes with death together. Her medical history was very complicated and, tired of tests and appointments that no longer helped her feel better, she had recently decided to go on hospice care. It was time to manage her symptoms as best we could and help her enjoy the time she had left.
But I thought we had a fair amount of time left.
When she did not feel good on Saturday and Sunday, I thought we could get her feeling better again. However, by Monday afternoon we realized that more than one body system was shutting down and there was nothing more we could do. I emailed her daughters, who had faithfully shared power of attorney responsibilities. They had worked with me so closely over the years that we sometimes felt the three of us should have some sort of title. We sometimes thought “The Three Stooges” would be appropriate—but really, we worked very well together.
On Monday October 19th they emailed the rest of their siblings and before I had time to go back to talk to Margaret again they began arriving. As they arrived she began exclaiming, “I must be dying; you never all show up at once unless I know about it ahead of time!”
At this point, she was seeing people we were not seeing, but she also recognized everyone and got to hold her three-week-old great granddaughter. All of her children and their spouses were present, along with grandchildren who were able to get here fast enough. I gave them time to be with her while I worked on coming to terms with the realization that she was going to die this time.
When I came back to her room to ask her if she wanted some pain medication she looked at me, grabbed my hand and pulled me closer to her face. She looked in my eyes and said, “You didn’t tell me I was dying!”
I kept eye contact with her and said, “Margaret, you are right. I didn’t really know until everyone started arriving.”
“So, am I dying?”
I had always been honest with Margaret but had always tried to offer her some sense of hope. The best I could offer her this time was, “Yes Margaret, it looks like you are dying.”
Looking away, her eyes teared a little and then she turned back again without saying anything.
I asked, “And how are you?”
She kept looking at me and said slowly, “If I do not wake up, I will be okay. And if I do, I will be okay, too.”
I said, “That’s right. Because either way, Jesus loves you.” She raised an inquisitive eyebrow, so I smiled and added, “He is, however, waiting for you to love him back.”
She nodded with understanding. There was a lot of history between us in those words.
A Life Renewed
When Margaret came to live with us, it was in our original two-bed adult family home. All three of our daughters still lived with us. My husband was working at the rehab center where Margaret lived, and one of my daughters had done an art therapy internship there. Margaret’s husband had lived there for a couple of years before he died and when she was still driving, Margaret used to give our daughter Ruthie rides home.
This nursing home was the last place I worked as a nursing supervisor. When I worked there, this facility was so routinely short on nursing staff that 25% of the long-term-care residents had pressure sores from inadequate care. I finally went to the administration to tell them we were dangerously understaffed for the acuity level of our residents. In response, I was told that I should learn some new ways to provide care because this would be our new staffing ratio—no matter how much care the residents needed.
My response was to tell them the first thing I wanted to learn was where I could find the paperwork to give my two-week notice, because my conscience would no longer allow me to be a part of this system. I learned where the form was, filled it out and quit, resolving to take my first serious step toward providing a different, more holistic kind of care.
Over time, we discovered which drug was responsible for this phenomenon and pointed out other symptoms of toxicity to her physician. Together, we whittled down her drug prescriptions and lowered all the dosages. My husband, who is an occupational therapist, worked with the staff and me to get her moving again.
And move she did!
Eventually, she could walk close to two miles with short breaks on her seated walker. Diet and exercise changes eventually allowed her to go completely off insulin. Her thinking cleared and she was able to walk to PDQ to buy lottery tickets by herself (she learned to use a cell phone in case she needed help). She could also walk to Walgreens to buy all kinds of things with no one looking over her shoulder.
One day, Margaret announced to me that she knew Rick and I thought we owned our home, but that we were too messy in the kitchen and she was taking over. And she did!
She told me that I was a good cook but way too messy, and she yelled at me about this as though I was her naughty daughter. She would also make my husband and I give her our clothes; she thought they should be ironed before we went out into the world. We actually enjoyed her bossy ways because this meant she had regained her health, purpose and sense of belonging.
Her daughter once told me the moment she knew her mother was back. By way of background: when Margaret first came to us, her diabetes was way out of control, so Margaret and I had some serious talks about her eating. For example, she thought it was a joke the first time I gave her a dish of ice-cream. She informed me she ate a box of ice cream for dessert. I told her we would have to come to an agreement on something less than a box of ice cream.
One time, we had a major blow out over a supersized malt that she had gotten one of my children buy for her from McDonalds. I was out of the house when it was ordered but returned when it came in the door. I took it and poured a serving size into a glass that I thought was at least remotely safe for her. She got so mad she wouldn’t drink any of it. She called her daughter and threw a fit on the phone.
Her daughter was thrilled! She said, “Like my dad always said, your mother isn’t happy unless she’s complaining!”
Now and Not Yet
Over the years we shared a lot of life together. Margaret watched my children grow up and attended their graduations and weddings. She gave us all a lot of unsolicited advice, and she also had a tremendous sense of humor.
Margaret helped my daughters sort through right and wrong relationships and they loved her so much they even took her out with their friends sometimes! We watched some of Margaret’s grandchildren marry and have their own children. Margaret bragged endlessly about her wonderful family and we loved them, too.
Margaret’s life expanded with the new relationships she formed when we moved from our private home to our current site. Over the past several years, she watched hundreds of people work on our grounds and develop new gardens. Margaret became friends with some of the regular volunteers—including a neighbor from England! She watched our board and development team meetings and got to know and tease them, too, and our Alderperson even came to know and love her.
Margaret became a beloved part of this little community and looked so healthy that people asked me why she was not living on her own. I only told them that she was a lot more complicated than she looked.
She lived full, busy days, spent with volunteer crafters and gardeners, my daughter who serves as our art/activity therapist, and our CNA Karen, along with the rest of our helpers. She also spent many hours holding hands with other residents who passed away before her. Margaret was a part of the Hope & A Future community, and because she came to love so many God-loving people, I believe that in the end she decided to love God, too.
Margaret came to us in such poor health her family is convinced that if she had stayed in the understaffed nursing home where she was living but not thriving, she would have died within months. Instead, she spent several years in a community with people who could see that she still had life in her, and who developed relationships with her.
Revelation 3:2 says, “Be watchful, and strengthen the things which remain, that are ready to die, for I have not found your works perfect before God.” I believe that it is in loving community that our works are perfected. In loving community, Margaret was strengthened and she strengthened others. In loving community, we can all strengthen each other, and I believe that love makes all of our works perfect before God.
At Hope & A Future, we believe that the meaning of this life is found in two commandments given by Jesus: love God and love each other as we would want to be loved.
We are grieving here, but we will help each other along and carry a little of Margaret in our hearts. Based on her wishes, her ashes will be placed in a flower garden here, and I am sure we will continue to smile with her from time to time. Margaret is on the other side now, but someday we will be together again.
We are so grateful God brought Margaret into our lives!
It was Margaret’s express wish that there be no funeral for her, but that a party be held instead. Therefore, we will hold her Celebration of Life party on Saturday November 12th from 11am to 3pm. Lunch will be provided by Margaret’s family.
By Karin Krause, RN, Executive Director at Hope & a Future
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Written by members of the Hope & a Future community including residents, volunteers, and staff.