primarycaregiver2022

This morning I am upstairs in my auxiliary bedroom / office. I have had my breakfast and coffee and am getting ready for the morning's work.  My son stayed overnight with Mom last night and is giving care through the morning. This means that I have breathing room. Time to think about all the life that I have been continuously pushing to the side because of the central role and responsibility of caregiving. This means I have time to recover my self, my sense of who I am, what I do, when I am not solely defined as Mom's caregiver, the person she is relying on for her health and well being. The reason my son is completing his first overnight shift is because we, as a family, have realized the importance of sharing the burden of Mom's caring needs. My siblings are coming to terms with the shared responsibility of Mom's wellness. It is not enough to express appreciation to me for what my husband and I are doing. They also have to roll up their sleeves and absorb the impact o...

  It has been a long day and it is only 4:20 pm in the afternoon. I got up at 5 am hoping to get a jump on the day and have a quiet breakfast before caregiving. Mom was up and out of bed at 5:30 am so she started with her juice, tea and bowl of porridge. The Home Support caregiver arrived at 8 am and gave Mom her bath, and Mom elected to get back into her nightgown and go back to bed for a nap before getting dressed for the day. Mom's sore left shoulder is causing a lot of discomfort so I gave her an extra strength Tylenol and a heating pad on her shoulder when she lay down. Within minutes she was deep asleep. She didn't wake up until after 10 am. In the meantime, I was busy with household chores and getting some writing done. I had my brother, who now lives with us in his own room upstairs, come down for coffee and morning check in. We finished a job application for him that we had started yesterday late in the day. That felt good. Later, in the early afternoon, the weather ha...

 The Palliative Care Nurse (PCN) has been for a visit to check on Mom. Mom's health has improved significantly from a year ago when she was recovering from a COPD exacerbation that resulted in pneumonia. At that time her GP registered her for palliative care and we made arrangements for an expected death in the home. This is Mom's wish, that she not be put back in a hospital or an institution, she wants to pass at home with her family around her. Mom moved in on Nov 1, 2021, her 91st birthday. Her doctor ordered a routine chest x-ray to get a baseline on the condition of her lungs. At that time he saw pneumonia and we started a concerted effort to improve Mom's health. There were at least three moments where I wondered if Mom was going to take another breath, it was so difficult for her to inhale and exhale. At that time we put Mom on the nicotine patch and over 10 weeks we ended her 60 year pack-a-day smoking habit.  Today Mom was awake at 5:30 am. I brought her juice and ...

The family rallied to provide caregiving coverage for Mom while I took a week away to visit my daughter, my grandchildren, and her farm. Yesterday my oldest brother (OB), a key member of our sibling team, flew back to the east coast. He arrived last week and spent Wed, Thu, Fri and Sat nights staying in Mom's guest room and looking after Mom. My eldest son (ES), who has been caregiving Mom since last summer, came to stay as well. He was able to provide continuity of care while OB learned the day to day routines of looking after Mom.  My older sister (OS) came to stay at the beginning and end of my trip to provide coverage between arrivals and departures. My youngest brother (YB) and his wife (YBW) were scheduled to take Mom for two overnights Sunday and Monday evenings, but they came down with Covid so OS had to change her plans for those days and come in to stay with Mom. There is a history here of difficulty, so the change in plan did not only entail extra communications to make ...

Mom's iPad gets used throughout the day. The articulating arm is very important because it lets Mom see the screen without having to put any strain on her neck.  I got back from my trip to my daughter's farm yesterday with a collection of new pictures. My Mom grew up on a farm. It delights her that her granddaughter is now running her own small farm.  I will be able to put up a new picture each day for Mom to look at and think about. We can talk about what is in the picture and her own stories from her childhood on the farm.

This is an idea I am feeling energized to develop. A caregiver retreat program designed to restore caregiver hope, vitality, and social connections. The program would be designed for physical, mental, emotional and spiritual renewal. The model would be a one week program - Monday arrival, Sunday depart. Each program would bring together a group of 10 caregivers. The program would be designed to provide solitary, group and one to one activities. Caregivers would have opportunities to be in nature, to attend a spa, to spend time with animals, to spend time in an art studio (drawing, painting, pottery, clay sculpture). They would be part of support groups facilitated by mental health professionals. They would have access to one to one consultations with mental health and spiritual guidance professionals. They would have opportunities to attend social and cultural events. There would be educational opportunities for caregivers to understand the system and policy conditions that are current...