primarycaregiver2022

  It is hard to explain to those who have not experienced it. It doesn't need to be explained to those who have experienced it. It is high summer. Those who are unencumbered by caring for someone who cannot fend for themselves are out camping, swimming, surfing, sailing. Enjoying nature, companionship and camaraderie. Experiencing adventures that will form memories that will last a lifetime. Here we are caring for our frail elder. She is in good spirits, but her body is failing. We have been here before over the years. For every health crisis we have watched and waited, nursed, made phone calls, discussed amongst ourselves what to do. And each time, to date, our frail elder has recovered. Each time, she has recovered enough to keep going. Each time she has regained some strength, some mobility, some degree of freedom from pain. Each time, she has also lost some strength, some mobility, some freedom from pain. Each time, she has lost some capacity and capability to fend for herself....

  "Our Father, who art in heaven..." I woke from a deep sleep at 445 am to the sound of Mom's voice weakly reciting the Lord's Prayer from her bed. I immediately thought she was on her way to find her resting place with Grandpa and Grandma Jones. Lately she had been reporting her conversations with them to me, telling me that they, "...were happy with their lives and what they had left behind."  In the last two days Mom had suffered from difficulty breathing, a bout of bowel incontinence and a swollen knee too painful to bear weight. I had been giving her extra puffs on the inhaler, a simple diet, and elevating her sore knee.  I padded into her room and found her in some distress, in tears. I couldn't figure out exactly what the issue was, it was more like generalized grief rather than specific sadness or pain. I sat on the side of her bed and held her hands, wondering what to do. Was she at the end of her life? Do I call my siblings and tell them to get...

  It is hard to explain what it is like to be responsible for everything to keep our frail elders as well as can be expected. There are no hard and fast rules about what is the next right thing to do. There is a constant internal dialogue about what to do next, what is needed next, what is necessary, what is over doing it, what is intrusive, what is respectful, what is dignified, what is an emergency, what is normal, what does it mean to allow 'nature to take its course'.  The question that surfaces every moment that my attention is not occupied elsewhere is, "Did I do enough? Is there something I need to do now?" It is the enormity of the responsibility, many, many days, carried out alone or in isolation.  Other family members are traveling, working, socializing, crafting - occupied with their own pursuits and concerns. They are not thinking about what did Mom eat today? Does she need to toilet? Is she lonely or enjoying her solitude? Is she bored or enjoying the qui...

  My life with Mom is constrained to activities around home. It is ok for me to go for a 20 minute walk with the dog off the property and leave Mom in her chair or on her bed, but I start to feel uneasy for any longer period than that without knowing someone is looking in on her and making sure she has what she needs. In November, 2021, Mom was put on the palliative care registry and we organized ourselves to 'let nature take its course' on a six month timeline. Had we ever done this before? No. Did we know what to expect? No. We set aside our regular life routines of planning trips to visit grandchildren, or planning renovations, or planning to rescue a second dog, or install a new chicken coop. We put our lives on hold to organize and manage for Mom's needs, thinking this was a short term, acute situation that needed our full attention. At the end of the first six month period, we consulted with the Palliative Care nurse and extended the palliative care registration. Mom ...

  645 am - When I woke up this morning and Mom's ceiling bedroom lights were on and her room was flooded with bright, electric light. She was turned on her bed with her face to the wall, deep asleep. The lid to the commode bucket was up and I could see she had a bowel movement. 8 am Mom has had her juice and tea. I could hear her heavy sleepy breathing from her room and then I heard her speaking softly. I wasn't sure if she was awake or asleep. I went into her room and her eyes were open.   I turned off the lights and emptied the commode bucket. I refilled Mom's water glass and set her morning glass of juice on her bedside table. As I sit quietly reading and writing on the couch, I hear her finish the juice.  "Do you want me to adjust the bed, Mom?" I asked. "Yes. Mom visited this morning." She replied. A little later, I hear an odd sound from her room and hasten to see what is happening.  Mom is up on her feet, rummaging in a basket on her bookshelf. Sh...

  2024 02 01 - Jenny Notes 844 am Thursday morning. Mom is still asleep. I took in her dentures, refilled her water glass, and brought her glass of cranberry juice. The kettle has boiled, ready to make her cup of tea when she wakes up. It is a strange place to live. Knowing that we don't know how many days she has left. Knowing that the next time I walk into her room she may not be breathing. Hearing the slap, slap of her slippers as she shuffles out from her bedroom to the big green chair. Finding my last nerve plucked like a raw piece of wire when she sings through her recitation of nursey rhyms for the umpteenth time. Finding my brain misfiring as it tries to make sense of her insistence that she needs a new envelope from her desk so she can write the word "Cop" on it. Then putting a chocolate bar in the envelope and telling me to put it in the mail. Laughing with her when I put the envelope with the chocolate bar in it in the freezer and say, "There, I mailed it....

  THE SUN NEVER SAYS Even after all this time the sun never says to the earth, "You owe me." Look what happens with a love like that -- it lights the whole world. Hafiz (1320 - 1389) One day Mom was feeling low, lying in bed in the middle of the day.  I had been outside walking the dog just before I came in to check on her. She was feeling too weak to get up and I reassured her that she was not lazy, she was giving her 93 year old body the rest it needed so it could get up later. She was comforted by that idea.  I reached out to hold her hands, both to make a connection and to check on her body temperature. Her hands were as warm as a hot water bottle.  "Oh, Jenny, your hands are so cold! Let me warm them up." She sandwiched both my hands between hers and held them tight. It warmed my heart that my frail elder Mom was giving her love as best she could to light the world. Yesterday we visited my extremely frail elder Aunt, Mom's older sister. At 98 she is rapidly...