primarycaregiver2022

Caregiving is not for the faint of heart. Matt brought us cheesecake from Uprising Bakery on his way home from church. Mom was resting on her bed, gathering her energy after the BM event. She now has an open sore on her right ear that makes it difficult to lay on that side of her head (I rinsed with saline solution earlier and let air dry before putting on a loose bandaid). She still has a sore left shoulder that makes it difficult for her to get comfortable on that side. So we settled on having her rest laying on her back for now. Mom mentioned something about her father being close. I asked her if Grandpa was near by. She answered, "Oh yes, he is not far." I said to Mom, "We really don't know how much time we have left together." Mom answered brightly, "No we don't. But we aren't going to dwell on that. We are going to make the best of it." I replied, "Yes, we are going to enjoy every minute." We both laughed as I gestured toward th...

 I am showing Mom my library of books on my Kindle account on her iPad. She is getting the hang of using her fingers to turn the pages. She read aloud from her iPad for the first time. She read from Jeeves and Wooster and she understood what she was reading. She laughed at a joke. Now she is reading Oliver Sacks - Musicophilia - from the iPad. This is actually going to be very useful for Mom. I’m sure she will enjoy this book, too. And I will love hearing her read a book that I never got around to reading myself but look forward to hearing. Here I am, sitting in my comfy chair beside Mom. As she is reading, I am writing and composing this blog post. It is more companionable for both of us to have me sitting beside her working than when I am at the other end of the room out of Mom’s sight. I can get this writing done and take care of Mom.

Mom's day is enriched by reading Charles Dickens' "David Copperfield" over Facetime on her iPad to her son, who is commuting home from work from New Jersey to Long Island. Mom is living at home in Vancouver, BC. It is unconscionable  that policies that shift the work of providing caregiving infrastructure to family homes has not been supported by evidence-based data. This evidence-based data would provide information necessary to ensure the transfer of roles and responsibility are properly supported so that family caregivers are positioned to succeed in their work to care for a loved on in lieu of institutionalized care. At present, where is the evidence-based data to support early discharge, aging in place, and hospital in the home? How is it possible to say caregiving is cheaper in family homes when we have no data to support such a claim? What does 'cheaper' even mean? For whom? At what cost? Part of the problem is that caregivers are often thrust into thei...

Adele keeps Mom's chair warm. Mornings are slow for Mom. That is when she has the most discomfort from her shoulder and her breathing is the most difficult. Our morning routine is for her to stay in bed until she is ready to get up. On Tuesdays there is no caregiver coming first thing in the morning to give her sponge bath, so we have the morning to freewheel. This morning I was woken by Mom reciting words from her room, over and over again, "Warm, kind, free." I had another bad night's sleep because I stayed up after Mom went to sleep and drank a cup of tea to work at my desk. This meant I got to bed late and then had trouble falling and staying asleep. You would think I would learn, but that is another topic. I got up and I could smell the pungent odour from the commode all the way down the hall. I rinsed and took Mom in her dentures and refilled her water glass before mopping the floor. I got Mom her morning juice with the laxative supplement. I am adding extra sup...

It was a difficult morning. Mom is dealing with bursitis in her left shoulder and the knock-on effects of losing the use of her left arm and taking powerful pain killers that disrupt her digestive system. I am home alone right now because my husband and brother are away for a few days helping my daughter install a door and window on her farm. There are so many (slow) moving parts this morning - Mom's health is declining as she struggles with the pain from her shoulder, an exacerbation of breathing difficulty (likely brought on by pain stress) and a real loss of her independence (sitting up in bed, in and out of bed, to the commode, getting dressed).  Finally we had accomplished all we needed to do to wrap up the morning tasks. Mom had finished her corn flakes and was lying back on her pillows. Her complexion was pale, she was breathless from the effort of sitting, and she had a stressed look on her face. I sat on her bed and took her hand. "Mom, do you think you are near the e...

 In my vigilance I notice every indicator or signal that Mom is losing ground. I work to reduce the loss of ground: keeping the changes small enough to manage day to day, increasing care to meeting changing, increasing needs, and stretching the timeline for changes to occur, so they are further apart, giving us time to re-group and re-set before the next increment of decline requires attention and management.

 The work of caregiving does not take time off. The caregiver cannot take time off, either. I say to myself, "Not on my watch". That is, nothing is going to happen to my Mom on my watch. This way, if anything happens, I will not be blamed, I will not be responsible, and I will not have to live with the guilt and shame of failure. But the reality of this work is that I am responsible 24 hours a day, 7 days a week. There is no shift change. There is no Supervisor. There is no one giving instructions for me to carry out. There is no one carrying out someone else's instructions.  All inquiries, decisions, and implementations redound to me. I am responsible for the care of my Mother, and that includes the care that leads to her life eventually ending. So I say to myself, "Not on my watch." But in reality, whatever happens with my Mom is going to happen on my watch as long as I am her caregiver. The fallacy I tell myself is that there is a watch, that sometimes it is ...