I tell you, while I am so blessed by having so much help, wow, the effort to co-ordinate it is not insignificant!
I now routinely have four different ladies in waiting taking care of HRH. I have government provided PSWs three hours a day seven days a week and they get HRH up and going each day with a bed bath, conversation and starting the attempts at hydration and nutrition. I have visitors from the Hub Hospice at 2 pm three days a week for conversation with both, as well as keeping the nutrition/hydration going. I have two ladies sharing six days a week, coming in around 4 pm for a couple of hours and cooking for him and keeping her company, helping with hydration, etc. Then most evenings I have privately hired PSWs setting her up for sleep with a bed-bath and further hydration/nutrition. Let’s not forget the one-off’s: this week the foot care nurse for both of them, hair stylist for her, home visit from our priest, home visit from her GP, a home visit from LHIN Palliative Care co-ordinator and then wound care nurses once they get started with the doctor’s order later today (she has sores on the tips of her big toes from too much pressure from her blankets – who knew?)
I am trying to standardize the times, so that there are fewer moving parts but so far achieving that amidst this chaos has eluded me. I am grateful for all this help, as it means I am not feeling so burnt out these days, but it sure keeps me hopping, making sure everyone is up to date on tasks and conditions. This means a series of texts before and after each person’s contribution to HRH’s care, although the use of the palliative care recording manual, means that some of it is written down there rather than in texts. Nonetheless, I am kept on my toes making sure each caregiver has what they need, knows what is happening and fills me in on how things went. There are still gaps in HRH’s care of course and I am the guy for whatever is not getting done.
Some days I am popping in here or there throughout the day, but without specific tasks to worry about, whereas other days I am getting her to the toilet and cleaned up again working with either my wife or her husband, or I am attending to her conversation, nutritional/hydration needs, or getting the royal prince consort a meal or snack or newspaper. There is no life like it! I am not trading it in. In a year where my intention is “more of you God, less of me,” serving the dependent works for me.
Originally written on January 8, 2019