Marriages that last for a lifetime are rare and
precious. Older couples have experienced joys, weathered many storms
and have endured the tests of time. Understandably, the impact on
the marriage relationship can be overwhelming when advanced care
forces one spouse to move to a care facility, causing a separation.
Most caregivers strive to keep their loved one at home for as long
as possible, yet that fateful day may come when long-term care is
unavoidable. This most often happens when a spouse’s safety and
medical needs have reached an unmanageable level or the caregivers
own health and well-being have become jeopardized. Initially, the
difficult decision to move a loved one may be taken out of the
caregiver’s hands by either the physician or other family members.
Oftentimes caregivers find themselves relieved to have been spared
from making this unthinkable decision. Nonetheless, facing this day
of change takes great courage, strength and many adjustments.
The Struggle of Separating
Betty and John were married 57 years when John
fell and broke his hip. Following hip surgery, John went to the
nursing home for routine therapy. A previous stroke at the age of 48
had significantly weakened his body; thus, he was now unable to
rally and achieve mobility again. For the past 30 years, Betty had
physically and emotionally stood by John through a myriad of serious
and even life-threatening medical issues. Sadly, this final incident
was the impetus for their physical separation and John would not be
able to return home.
Arnie and Jean were best friends and were married for over 50 years
when Jean began to show signs of Alzheimer’s disease. Arnie
faithfully cared for her over the next three years. Then a 24-hour
vigilance began when Jean became incontinent, would not sleep
through the night and began wandering away from the house. Arnie
brought her to the hospital and, upon evaluation, she was
transferred to an assisted living facility with a security system
for her safety.
The ravages of Alzheimer’s disease also separated Nancy and Jim who
had been married for 48 years. Jim paced the floor and attempted to
leave their apartment every day to catch a ride to “go home.” When
his behavior could no longer be redirected, Jim had to be moved to a
local assisted living home where he received 24-hour supervision.
These spouses faced an unwanted separation when their loved one
needed full-time care and could not safely remain at home. All three
are now on a new journey, facing this time of transition, adjusting
to living alone and seeking optimism for their futures.
The First Months
Caregiving can end so abruptly that the
caregivers are overwhelmed by the drastic changes. Living in “limbo”
apart from a lifemate can be one of the most difficult events that
couples will ever face. This time of transition may be met with both
resistance and acceptance. Life as they know it has ended and a new
chapter is unfolding with each day. The marriage is strongly
impacted and couples face many struggles and challenges, especially
in the first few months.
Nancy was focused on caring for Jim for over 10
years. She describes herself as a compassionate, patient and caring
person; yet over time, she grew weary as Jim became fully dependent
on her. As his behaviors escalated, he had to be hospitalized and
was then transferred to a care facility within days. Nancy expressed
a feeling of “shock” when she suddenly had to “let go” of her
familiar role as his caregiver. She felt a sense of relief, yet a
loss of control and had difficulty facing the silence at home and
the empty time she had on her hands. The feelings were bittersweet.
She recalls that the first month was the hardest as she faced life
without the daily presence of her husband.
Arnie found the separation from Jean was nearly unbearable in the
beginning. He recalled, “This was never a part of the plan for our
lives.” He was fraught with guilt and angry at what the disease had
taken from their lives. Yet, he also knew he was losing sleep daily
and he felt very close to having a heart attack from the worry and
stress of caregiving prior to moving his wife.
For many years, Betty dreaded this day of
separation. She recalled the fear and uncertainty she felt when John
was hospitalized after his fall and realized their future together
hung in the balance. She had been John’s caregiver throughout most
of his adult life and now they would both encounter the adjustments
of living apart.
Facing and acknowledging the emotions of living
apart is an important element of coping with this new experience and
solitude. Caregivers may struggle with feelings they believe are
wrong, such as guilt and anger. Feelings of failure or defeat, along
with sadness, are all normal responses to this dramatic life change.
Grieving for the life and dreams once shared is another predictable
response. Ultimately, feelings can be very destructive unless one
can learn an alternative way to view and accept their situation.
Nancy fought to hold back the tears when she had to say goodbye to
the person her husband “was” and the life they had shared together.
She questioned her motives, yet realized that moving her husband to
the care facility was actually a ”loving decision” and that he would
be safe and receive the best of care for his increasing needs.
Betty also realized that life wasn’t ever going to be the same and
that this change brought a flood of difficult feelings to the
surface. Over time, she recognized that if she were going to survive
this change, she would have to embrace it and see it through “new
Support groups at the nursing home or care facility, personal
counseling, pastoral care and time spent with the family can all
contribute to accepting this emotional transition. Focusing on past
memories and grieving openly can also lead to healing the feelings
Changes in the Relationship
When distance and living environments separate a
couple, the focus turns to building a different relationship with
the spouse. The partnership of marriage does not have to end when
one spouse enters a care facility. Instead, new bonds and
connections can be made together and the relationship can continue
to be nurtured.
Arnie shared that, “She doesn’t know me anymore as her husband, but
rather as her ‘best friend’ and someone who cares about her. I am
learning to live with that now.”
Nancy does not drive, so she is only able to visit her husband once
a week. She has found that each visit seems to bring more peace and
she is pleased that Jim is beginning to accept his new home. He
doesn’t recognize her every time and she realizes she is slowly
losing him. Nevertheless, she remains involved at a practical level,
doing his laundry, helping him with personal hygiene or attending an
activity together. She sees these visits, along with her own
planning for the future, as her most important responsibilities now.
The emotional and intimate ties of marriage can
be enjoyed between couples well beyond the day of physical
separation. Creative planning and partnering with the long-term care
facility can help foster closer relationships. The staff at the
long-term care facility can also play an important role in assisting
and nurturing the needs of couples by offering quiet, private spaces
so couples can share quality time.
At the nursing home, Betty has found a new closeness and bond with
her husband that she thought would never be possible. Once filled
with fear of all the responsibilities and frustration with the
endless decision-making, prior to his nursing home placement, she is
now free from these emotions and can focus solely on her
relationship with her husband. Although John is now a permanent
resident, she continues to see herself as his care partner and plays
an important role in his daily life.
Betty was able to get John a private room and a television and now
spends every afternoon with him. Her routine, driven by love and
concern, has given her a new sense of purpose with her husband at
this stage of their lives. Sometimes they watch old movies together
and other days they snuggle together and take naps. The staff has
respected their privacy and this intimacy has kept them both strong
and able to cope with their circumstances.
She sums it up with this letter that she wrote to John……….
We were always close, but this episode in our lives has made us
closer. We’re both more aware of what loving means. You aren’t there
to die; but to LIVE. So lets keep making memories and caring. Know
that I will be there with you. I don’t have to worry and be anxious
and afraid now. We have quality time here at the nursing home. If we
were at home, we wouldn’t be taking naps together, sharing a cup of
coffee, watchingmovies. This is ‘home’ now, for both of us. All we
have to do is enjoy each other. If we were at home, I’d be your
caregiver and you would resent it. I’d resent you for resenting it
and we would end our love story in a way it shouldn’t end. We’ve
been spared that unthinkable end. We can go to our graves as much in
love as we were 58 years ago. It’s a gift!
Taking Care of Self
Caring for one’s self and maintaining a positive
quality of life after a spouse moves to a care facility is a crucial
part of survival. Caregivers have often delayed their own doctor
visits and medical care procedures because they have focused most of
their time and energy on providing care to their spouse. Now is the
time to make appointments and give priority to health care needs.
Besides, the health and well- being of the caregiver will directly
reflect on the relationship with their loved one.
Arnie had his first physical in years and is now on a medication
regime that has lowered his high blood pressure. In addition, after
years of waking up hourly to check on his wife’s safety, he can now
sleep through the night and has a renewed sense of energy.
Nancy found that her anxiety has significantly decreased knowing Jim
is in a safe place. Massage therapy twice a month has also helped
relieve her stress-induced back tension.
Betty is now seeing her doctor regularly and is not only able to get
a full night’s rest, but she is also returning to that person she
was before John became sick. She didn’t realize how depressed she
had become and how much the “essence” of herself had been lost over
time. She has turned to journal writing as an outlet for
self-discovery and also shares her wisdom and experience with other
caregivers in a support group.
Facing the Days Ahead
Moving forward can bring a shift in daily life
as well as new opportunities. Socializing again is an important step
to re-engaging in life and recovering after years of intense
caregiving. All three spouses in this story had lost their social
connections, yet are now able to rekindle friendships, return to
past interests and step back into social groups.
Nancy has found solace in her quiet times at home through reading,
working on puzzles or reminiscing through photo albums. Her social
life has improved as she spends time with friends on walks, goes out
for lunch, on shopping outings and church. When the evenings get
lonely, she seeks out others who are alone, calls a friend or family
member, and twice a week she plays piano in a musical group in her
apartment building. Her love of music has been revived and has been
an essential part of the recovery from her personal loss.
In between visits to the nursing home, Betty cares for the
household, visits friends and attends a Bible study group. She also
has a dog that keeps her active on daily walks and helps her face
the quiet, empty evenings.
Arnie is slowly adjusting to the change of not having Jean by his
side every day. He still deals with feelings of sadness and grief,
yet he can see he has gained emotional strength. He visits the care
home about an hour a day since any longer produces too much
agitation for Jean. He does attend a men’s coffee group, has begun
fishing again and is taking a short trip with a friend for the first
time in many years. Recently, his grandson came to live with him
while attending college. This has taken away the sting of loneliness
and has given him a renewed sense of purpose.
Give yourself credit for the years of care you provided at home and
acknowledge the love that still remains in the relationship
Recognize that living apart will bring a range
of emotions, both positive and negative
Reach out for support from others, especially
from those who have walked in your shoes
Establish a new relationship with your spouse
Make self-care a priority
Keep positive memories alive through reminiscing,viewing photographs
or writing your love story
Re-engage in hobbies, social groups, and invest in friendships or
social causes with your additional time
In summary, living life apart from one’s spouse is not desired or
easily accepted at first. Studies have shown, however, that while
the physical care of their spouse may have ended, most married
caregivers remain emotionally connected, loyal and committed. They
also uphold their wedding vows and continue to see themselves as an
integral part of their spouses’ lives despite the changes and
distance that have come between them.
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