primarycaregiver2022

  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...

  It has taken two years for me to figure out how to live and work as a family caregiver for my frail elder Mom. There is a structure starting to emerge for my days and potential lines of self-employment that are coming into view that fit with that structure. First - I was not planning on retiring from my work as a project management consultant. Having lived with a hidden disability all my working life, I had never had the kind of consistent employment and financial security that would have funded a retirement. I was planning on continuing with my consulting work into my 70s as it felt manageable and I figured I was likely to get better with age : )  Mom moved in on November 1, 2021, the year I turned 65. I was still working full time and weathering the disruptions of Covid to my paid workflow. During 2022 it became clear that my main client work was wrapping up and I realized I did not have the inspiration to try to find another client or apply for a job in project management...

  Mom is off to stay with family for a two-night overnight. She will be back sometime Boxing Day TBD.  My brother picked her up at 10 am. She was dressed in her new green corduroy pantsuit with a new brown knit cap tied with her signature red ribbon.  There were three bags for Mom's trip. The first bag had her pyjamas, slippers and house coat. Oops! I just remembered I forgot to pack extra Depends for the trip. I'll see if they need me to run them up or if they will pick some up. They may have some on hand from previous visits.  The second bag had Mom's medications. Oops again. I'm not sure I gave them tomorrow night's dose and also Tuesday morning dose. I think I am going to have to make an extra trip to make sure they have everything they need. The third bag had presents from Mom for family and also extra gifts left from my out-of-town brother's visit here that might fit other family members. I got distracted during packing because I was trying to figure out i...