A course called “Powerful Tools for Caregivers” was developed by an organization in Portland. You can read general info about the self-care education program for family caregivers at powerfultoolsforcaregivers.org
As part of the course, class participants receive a copy of a book titled “The Caregiver Helpbook.” Brain Support Network volunteer Denise Dagan is reading the book and will be sharing the highlights, chapter by chapter. If you’d like far more detail that Denise’s summaries allow as well as access to the book’s terrific worksheets, note that the book is available for purchase in both English and Spanish at powerfultoolsforcaregivers.org
The title of chapter eight is “Spouses and Partners as Family Caregivers.” This chapter focuses on the role of the well spouse/partner in caregiving. The main issue for spouses/partners is that “the person with the chronic condition may become less and less ‘the person I fell in love with’ as the disease or chronic condition affects physical appearance, physical abilities, memory or thought processes, personality, and emotional responses.”
Here’s Denise’s short report on chapter eight.
Notes by Denise
The Caregiver Helpbook
Chapter Eight – Spouses and Partners as Family Caregivers
When one partner is significantly healthier than the other, he/she is referred to as the “well-spouse/partner.” These couples may face unique challenges, such as:
* Experiencing the sudden shift in the relationship and intense grief that accompanies the awareness that the couple’s relationship as they have known it is gone forever.
* Unsettledness due to the emotional rollercoaster of difficult feelings such as anger, guilt, resentment, and loneliness.
* Dealing with feelings of intense sadness at the loss of shared hopes, dreams and activities.
“The person with the chronic condition may become less and less ‘the person I fell in love with’ as the disease or chronic condition affects physical appearance, physical abilities, memory or thought processes, personality, and emotional responses. Consider:
* The changes in roles and routines that were in place for many years.
* Fear that care needs may become too great for the spouse/partner.
* Financial concerns
* Loss of any or all of the intimacies that have been a part of the couple’s special relationship.”
When both caregiver and care receiver are very young there may be children or teenagers at home who are affected by care decisions. The well-spouse/partner may have parenting and employment responsibilities, or may be a caregiver for one or both parents/inlaws. It may be useful to connect with a well spouse support group or seek individual or couples counseling for help in dealing with these complex and difficult challenges.
If you are a well-spouse/partner, ask yourself:
* Am I taking care of my own health needs – taking my medicine, keeping my medical appointments?
* Am I smoking or drinking more than before?
* Am I feeling isolated from friends?
* Have I given up activities I used to enjoy?
* Do I feel like I am ‘losing myself’?
* Do I need to ask for more or different kinds of help?
* Do I feel guilty for wanting to acknowledge my own needs and emotions?
* Am I increasingly irritable or angry?
* Am I having problems eating or sleeping?
* Am I experiencing increased anxiety of depression?
* Does my stress level feel overwhelming?