2022 Family Caregiving Time Records - Apr - 2024 01 25

 

This was our sixth month of caregiving since Mom came home. Mom was more agitated and starting to show signs of significant memory loss. It was extremely difficult mentally and emotionally to be with her every day. We were still giving her the extra puff inhaler twice a day as well as her regular pills and inhaler in the morning and pills at night. We did a video consult with Mom's doctor and he suspected a UTI. We got her started on antibiotics right away while we waited for tests to come back.

We continued to try to keep our costs for paid caregiving down, while I continued to try to keep up with my paid work. At this point I had one overnight away from Mom while my sister stayed with Mom. We logged 88 transitions over the course of the month, this count does not include the daily caregiving for showers and sponge baths. So the number of visitors in and out was more like 6 additional visits per week x 4 weeks = 24. Make the total transitions for the month 112. That is an average of almost 4 visits per day every day of the month. The amount of time, energy and communication that goes into context switching cannot be discounted from overall draw down of caregiver time and energy.

The first three weeks of April we paid for 6 visits from the external paid in-home service. Each visit was 5 hours in length and cost $175 per day, for a total of $1,050 Subtotal cost to Mom's savings.

At this point we were still operating under the prediction of Mom having 6 months left to live. She was on the Palliative Care Registry. We did not know how long she had, but the doctor had indicated that 6 months might be realistic. Of course, this prediction was made during her COPD exacerbation in November / December and she was still smoking at that time. We got her off the cigarettes by middle of December, and that made a huge positive impact on Mom's overall health and well being.

During this month I realized I could not handle anymore comings and goings for Mom's care and dropped the laundry service. It was easier to do the laundry myself than coordinate pickup, dropoff, administration, bill paying, etc.

Despite our efforts to reduce my caregiving time and my efforts to engage family to help, I still put in 595 hours of caregiving time for the month of April, 2022. I was definitely starting to feel the 'burden' of care. It wasn't that Mom was so terribly difficult to care for, it was that I was with her so many hours of every day and night. When I wasn't with her I was in a mad dash to keep up with my paid work. I was in a near constant state of context switching, while at the same time I was the responsible decision maker for all aspects of Mom's shelter, food, clothing, cleanliness, social connection, medications, doctor consults, banking, etc. I was responsible for every facet of her life, down to making sure she had a water glass within reach at all times.

It is hard to convey how much this work was taking out of me on a day to day basis, much less week to week and month to month.

I was starting to observe this feeling of bafflement as the enormity of the role, responsibility and work requirements came into focus. I had no idea what I was getting into, and now we were in the full force of the mission and I couldn't do anything but scramble everyday to keep up.