For Better or For Worse - How do we cope when a spouse develops a chronic disease or disability?
When we say those lifetime vows, we naturally glance over
the “for worse” part and focus on our ideal futures together. Raising a family,
buying a home, having children and growing old together are the dreams we hold
on to when we join together in matrimony.
Being fragile human beings, we may find that one partner
becomes susceptible to disease and disability. Rarely are we prepared to face
the life altering challenges that come with a spouse becoming disabled. A new
“normal” is established when a family member is unable to work, has to travel
to medical appointments and needs assistance with activities of daily living. This
isn't just a major life change for the sick individual. It affects everyone in
the household, especially you, as the patient's spouse or significant other,
who may face new responsibilities of caring for your partner; often in addition to working and caring for children.
There's no way to prepare for a serious illness in the
family, especially one that seems to come out of the blue. We all learn how to
cope with minor ailments as we age, but there's no set path for navigating all
the aspects of a more serious condition and its effects on the family. And the reality
is every family copes differently. Priorities and perspectives change and one
of the “keys” to adapting to major life changes such as illness is creating a
new vision for our lives and focusing on living in the here and now.
Build your “tool box” for handling long term
medical challenges in a marriage:
- - Assure your spouse that you are in it together. Listen to your spouse’s concerns and keep an open mind and an open heart while reminding them that you are in this for the long term.
- - Plan to go to medical appointments together whenever possible. Decide what each of you wants to know, who will ask which questions and who will write things down. When treatment choices must be made, partners can help their spouse gather information and weigh the pros and cons.
- - Communication can be a challenge in any relationship, but illness has a way of taking an emotional toll on everyone in the family. Instead of hiding from feelings of frustration, guilt and resentment, find a therapist that can work with both of you to express and work through the dark feelings that come up rather than suppressing them.
- - You don't have to do everything perfectly—and you don't have to do it all yourself. Ordering takeout or hiring help to help with chores, errands, cleaning and help with companionship is acceptable, as is asking friends and relatives to help.
- - Ask for help! Be specific with family and friends as to what tasks you would like help with.
- - Make time to take care of yourself. It may feel like you have no time for yourself, but it's important to consider what small things you can do to employ self-care to keep your spirits up and keep yourself healthy in body, mind and spirit.
Resources
to explore in obtaining assistance and in home support:
The
Aid and Attendance (A&A) Pension provides benefits for
veterans and surviving spouses who require the regular attendance of another
person to assist in eating, bathing, dressing and undressing or taking care of
the needs of nature. It also includes individuals who are blind or a patient in
a nursing home because of mental or physical incapacity. Assisted care in an
assisting living facility also qualifies.
What
is the Aging and Disability Resource Connection (ADRC) of Oregon?
When you are looking for information about services to
address aging or disability needs, the Aging and Disability Resource Connection
(ADRC) of Oregon can help you learn about local public and privately paid
options. The ADRC has trained professional staff who can help you and your
family with immediate needs, or help you plan for the future.
Public
Funding Sources
The site listed below provides
a local contact office for possible public funding sources to pay for some
in-home support or respite care services. Contact
local offices directly to inquire about eligibility and services offered.
Volunteer Services through the Department
of Human Services
Volunteers are an integral part of the Department of Human
Services. There is a broad range of volunteer opportunities that help
serve DHS clients and staff. Volunteers are recruited and placed in jobs
that help to meet community and DHS customer needs. Volunteers provide
personalized ways to help DHS clients, staff, offices, and communities in a
wide variety of ways.
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Brain
Injury Alliance
The
mission of the Brain Injury Alliance of Oregon is to create a better future
through brain injury prevention, advocacy, education, research, and support.
National
Multiple Sclerosis Society – Oregon Chapter
The Society offers many programs and services to help
people affected by MS live their best lives. Find resources in your area to
learn, connect, and get support.
Wendy McInnis
www.lifetreepersonalservice.com
