Hello again. I'm finally back at the computer after a few weeks of second tier carepartnering for friends learning home peritoneal dialysis at one end of the Fraser Valley and for another friend hospitalized with chest pain and dysrhythmias at the other.
Journeying with these loved ones has reminded me, once again, of the multitude of changes we experience as serious chronic illness or disability enters our lives. (- Often things we don't expect, like no longer having room for our bedroom furniture because the room is filled with cartons of dialysis solution!) Permanent and ongoing change becomes our new reality and we are constantly in the flux of adjustment and readjustment. With each change comes the need for recognition, time to grieve, and a period of reorientation. (Which can be difficult to achieve when one change follows on the heels of another.)
In her excellent and now classic book, Heartmates: A Survival Guide for the Spouse & Family of the Heart Patient, Rachael Freed, (formerly Rhoda Levin), suggests writing down an assessment of the changes experienced by carepartners, saying that it will help to clarify our thinking and validate our emotional responses. She offers a number of specific changes within several categories to guide our assessment:
Sleep
Quantity
Quality
Disturbances
Dreams and nightmares
Frequency of naps
Food
Level of Appetite
Time spent shopping
Time spent preparing food
Frequency of eating out
Primary foods
Priority of food and its preparation in your life
Exercise
Type
Frequency
Quantity
Strenuousness
Regularity
Differences between you and your partner
Work/Career
Degree of involvement
Schedule and hours
Level of satisfaction
Quality of work
Leisure Activities
Types of involvement
Schedule and hours
Level of satisfaction
Quality of work
Financial Responsibilities
Providing income
Budgeting
Allocating funds
Handling banking
Friends & Social Activities
Frequency
Quality of time spent
Level of satisfaction
Initiating activity
And these are just the day-to-day changes. There are also all the life alterations wrought by taking on complex medical tasks at home and managing all the shifts in roles and family dynamics as we accommodate the illness.
Freed goes on to suggest that an objective look at these changes empowers us, allowing us the choice of initiating further change in areas where we are dissatisfied. For example, if we have let a supportive friendship slip, we can plan to invite that person over or have a visit out.
She also reminds us that not all imposed changes are negative. There are positive alterations to diet and exercise, for example, that can benefit both the carepartner and care recipient.
While Heartmates is written specifically for cardiac spouses, I would recommend it to anyone providing care for their life partner. It is clearly written in manageable bites and offers practical, hands-on information for managing life with acute and chronic illness and disability.
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