Living Separate Lives "Together"

When Advanced care means living apart from your spouse

by Kristine Dwyer, Staff Writer
 

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.

Emotions

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 eyes.”
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 of loss.
 
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.

Staying Close

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……….

“Dear 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!
Love, Betty”
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.

Key Points

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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