primarycaregiver2022

  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...

There is no protocol in place that is activated when a family member says, "We are going to bring our frail elder home because they can't fend for themself anymore and we don't want them to go into an institution."  A couple of mornings ago I noticed a large swelling and open wound on Mom's left ankle. There is no preparation for the scope of work the family is undertaking. Often this is the first time the family has taken on the role of primary caregiver and the responsibility of providing geriatric caregiving infrastructure. What could it be? Was it the cancer we had treated last spring re-emerging in a new place? Was it a bed sore? Was the hot water bottle too hot and burned the skin? There are no predictions for the timespan for the mission of providing family-based caregiving infrastructure. The mission is to provide for the needs of our frail elder until their life comes to an end. The final milestone in the family caregiving mission is death of their loved ...

  Mom woke up this morning singing. This is not unusual, when she has energy, she often sings. This morning's song was, When I grow too old to dream, I'll have you to remember. When I grow too old to dream, Your love will live in my heart. So kiss me my sweet, and so let us part. And when I grow too old to dream, That kiss will live in my heart. It was a song her oldest sister used to sing at the piano when Mom was a little girl. She still remembers all the words.

  After a certain age our body systems go through myriad stages of adjustment and eventual breakdown. Disease processes that were a inconvenience in our 50s might necessitate a doctor's visit in our 60s and further medical interventions in our 70s and 80s. By the time we are in our 90s there are compounding impacts as various body systems run in increasing states of interconnected frailty and intermittent failure. We have been going through a difficult time getting Mom's digestive system back to regular function. This is pretty much the caregiver's nightmare, an experience and knowledge of our frail elder's body that we were not prepared for and would prefer not to know. It has been hard for Mom on multiple fronts, not the least of which being her loss of body autonomy and self-control.  We are lucky with our Mom. Although she suffered disabling mental illness in her 20s that resulted in living in mental health group housing for forty years, her mental illness was never...

  It is hard to tell what might be happening day to day with a frail elder, when so many body systems are in various conditions of operation. The digestive system. The respiratory system. The nervous system. Systems for reasoning and logic.  One day needs to be a complete rest day.  "No, I'm not getting up today. I'm going to stay right here in bed for the whole day." Another day may be a high energy morning. It's 5:30 am and I wake up and notice the lights are on in the main room. I stumble out of bed to find Mom in her big green chair, "Good morning, darling! How are you this morning? Can I have a drink?" Later in the afternoon, all the energy is gone. "Mom, you are looking a little peaked. Is it time to go for a lay down?" "Oh? I guess you are right. Let me toilet first. Help me out of the chair." Still another day might start with a long sleep in, punctuated with a glass of juice, a cup of tea, and even a bowl of rice crispies in ...