There are some things that are hard to explain, even to myself. Grief. I thought I had it defined when I read a description C.S. Lewis wrote about grief coming in waves. It will suddenly hit you hard and later you think you have made it to the other side. Yet it rolls in again. That is one part of grief. But there is another part that is harder to define. I will try.
I am a caregiver for seniors and I live at Hope & A Future with the people I provide care for. The strengths and needs of each person who lives here gradually become familiar to me, and much like I would if it was a family member, I feel sad when a resident’s decline means that a strength becomes a need. Yet part of my job is to identify these changes and explore options for dealing with them in the most palatable way possible. Options are discussed with a resident and her significant others, and on we go.
As an RN, I am blessed to work with a wonderful staff of professional care givers, and we have been able to meet some pretty advanced needs, including end-of-life care in our adult family home.
When resident changes are gradual and their needs increase over time, we generally believe that family members grieve in small steps along the way. When the end of a person’s life comes, hospice literature tells families that they may experience the death with some sense of relief. But as a caregiver, I am not feeling that sense of relief this time. Instead, I am feeling disoriented, out of sorts.
I have been involved with Pat’s family for the last 3¾ years as we navigated her care needs and problem-solved together. We will miss the regular contact and friendship with them. We have waited for and enjoyed the birth of Pat’s great grandchildren and watched them become toddlers. The rhythm of daily life was structured around her needs and is now dramatically changed. I no longer walk over to check in on Pat before I get my first cup of coffee for the day and meals do not involve an hour or two of slow careful feeding.
But it is more than that. Mixed in with the significant demands of Pat’s care was a joyful and sometimes silly way of looking at life that was uniquely hers. And now, in her absence, I think I need to figure out how to make that outlook my own, to fill the void.
Having Fun Along the Way
Pat was always in the mix of the hustle and bustle of this busy non-profit adult family home. Staff, family, friends, volunteers, board members and the development team would come and go throughout the week. Pat watched it all. And if something funny happened, she almost never missed it.
She lost the ability to walk and to form words. But she did not lose the ability to understand what was being said. She enjoyed a good laugh over body humor, miscommunications and people’s silly ways. Her humor was not mean-spirited in the least, she just had an inner joy that seemed to allow her to see the sunny side of life.
One of her daughters told us that when Pat was diagnosed with dementia, she came home from the clinic, walked in the house and sang “I have dementia”, as if it were a fun song! I believe this was how she took life on. Her “I have dementia” song makes me think her line of reasoning was that the diagnosis explains what has been going on and now we will deal with it and have as much fun as we can along the way.
Jesus asks us in Matthew 6:27, “Which of you by worrying can add one cubit to his stature?” I think Pat may have lived with the understanding that worrying is not all that useful. Problem-solving and prayer are useful, but not worry. During the last year of her life, Pat sat in her big Broda Chair, dozing, smiling and laughing. She continued to do the same when she became too weak to get out of bed.
When Pat first moved here, she could still walk with a walker. Her balance was terrible and she was impulsive about jumping up if she thought she was going to need to use the bathroom. As staff, we lived in terror that she would jump up and fall. And sometimes she did. Because she did not want to lose control of her bladder I decided the best thing we could do was make sure we got her up and into the bathroom very often and then did whatever we could to help her empty her bladder on those trips.
If you are at all familiar with stress incontinence, a sneeze or laugh can result in an unwelcome wet surprise. Management includes trying to keep the bladder from becoming too full and trying to empty the bladder completely when you do void. Pat was not good at voiding on demand so I decided to try making her laugh while on the toilet and the result was a good void!
I very quickly realized that if I made up words to songs that may have been familiar to her at some point in her life, she would laugh. So things like, “To dream the impossible dream” became “to pee the impossible pee”. And if I added dramatic gestures or a dance, that worked even better.
So a significant portion of my day was spent acting absolutely foolish. Eventually I asked Pat if she waited to void until after I had successfully made a fool of myself, and that made her laugh.
Her initials were PP, so I took that on a ride, too. Sometimes I did strange dances with the songs and named these PP dances. Eventually I would just ask if I was going to have to do a PP dance and she would laugh and that worked as well. All those silly moments turn out to be precious memories, now!
“I’m Coming, Honey!”
My favorite story happened fairly early on in our life together. The Adult Family Home is in an 1880’s farm house that has been added on to twice. Before we owned it, a massive addition was put on that enclosed the beautiful brick wall that once was the back exterior façade of the house. Among other beautiful spaces added at that time was a spacious window filled kitchen and sunroom. After Hope & A Future purchased the property, with the help of donors and volunteers, we added a beautiful accessible wing where the residents and some of the live-in staff reside.
Before we were able to build the addition, we were helping dementia patients up the stairs on a chair lift while staff ran up another stairway to meet the residents on the second floor. Once, Pat was on her way up the chair lift when another resident who often thought she was a staff person came to meet her pushing her own walker and saying, “I am almost there, honey; I will help you!”
Pat’s eyes became very wide and without saying a word, she stopped the chair, reversed the switch, and went back down the stairs. I went back to meet Pat at the bottom of the stairs. Although I do not allow people to refer to residents in any way except by their preferred name, I imitated the other resident and said, “I’m coming, honey!” and we both laughed quietly until tears ran down our cheeks. Maybe you had to be there, but it was one of the funniest things I have ever seen! For years after that I could whisper to Pat, “I’m coming, honey,” and she would laugh.
One Last Smile
The delight of this friendship was so real and heart-warming, that I knew it would be hard when Pat died. But honestly, it has been harder than I expected. The first time Pat did not smile at me when I came to her room, I had a flashback of the last big smile she gave me. It was on her death bed and her eyes were so bright and her toothless smile so broad that It felt like the best smile yet. It felt like she was saying, I love you, I am leaving soon and I am ready!
The next day her smile was very weak. The day after that, she did not respond at all. That was the day she died. She died peacefully, without pain and surrounded by family and caregivers who loved her.
Pat lost the gift of speech, but her expressive face continued to communicate a great deal to everyone that knew her. She was the first to laugh at a funny story and she laughed even when alone if she was watching Everyone Loves Raymond or Andy Griffith.
Maybe because her smiles were so beautiful and her quiet laughing was so genuine, we spent an unusual amount of time working to make them happen. We laughed at things that could also have been perceived as rude or occasionally even tragic. But there was a love and genuineness to it.
Since Pat’s death, I find myself happy for the lovely woman who has passed away. I believe she is in a far better place. That I have a job to do has not made moving on any easier, though writing this post has been therapeutic.
Proverbs 17:22(a) says, “A merry heart does good, like medicine.” Not that it’s easy, but I invite anyone reading these words to join me in trying to look at life’s tragedies with a little more joy, to seek out that joy in prayer and problem-solving. And I am sure that laughing along the way would do us all a lot of good.
Karin Krause, RN
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Written by members of the Hope & a Future community including residents, volunteers, and staff.