Q: “My wife suffers from Multiple Sclerosis. I’ve looked after her at home for many years, but last year I got to the point where I couldn’t continue to care for her and keep my business going at the same time with my own health collapsing. We couldn’t afford the full-time help she needed at home, so she had to move into an extended care hospital. This past year has been the loneliest one of my life. It’s like being in limbo: we’re still married but we’re apart. After 36 years together, I can’t get used to being separated this way.”
A: Thank you for raising this topic. It is an important one that many husbands and wives around the province can relate to. The major change in your marital circumstances, precipitated by chronic health problems, can be described as “involuntary separation.”
When your wife moved into the care home, your status changed. As one caregiver said, “I’m neither part of a couple, nor am I a widow.” The problems of being alone – but not single – are real.
More and more recognition is now being given to the losses experienced by the partner still at home when their spouse moves into a care home. While the overall outcome of such a move may meet the couple’s needs in many ways, difficulties can arise for the spouse at home, including:
- loss of companionship and sharing loneliness/depression
- problems of sexuality
- change in the role of the primary caregiver couple friends may drift away
- discomfort at the idea of making new friends alone
- financial strain, caused when the couple’s income is split between two residences
The grief that follows a death is understood and accepted by society in general. But the grief that may accompany involuntary separation is not so well understood. The grief associated with the death of a loved one may be overwhelming at first, and gradually lessens. On the other hand, grief associated with chronic illness seems to go on and on. Your feeling may fluctuate between hope that your wife will get better, and anger and sadness over an irreversible condition.
HERE ARE SOME IDEAS THAT MAY HELP:
- A wonderful, short book called “When Love Gets Tough” written by Doug Manning offers comfort and insight into dealing with a loved on moving into a care home.
- Some spouses might be eligible for the Involuntary Separation Allowance, as well as the Guaranteed Income Supplement, which may ease the financial strain of maintaining two residences.
- Making contact with other spouses who are visiting their husbands and wives at the extended care unit can be a natural source of support and new social relationships. After all, they are “walking a mile in your shoes.”
- Find out if there is a social worker on staff at the care facility. He or she could be a source of information and support. Joining in activities with your wife at the care facility may help to ease her adjustment and promote the development of mutual social contacts there.
- Sharing your experiences in a family support group can be very helpful, and you in turn may give others encouragement and insight in dealing with the complexities of being a spouse alone.
- Remember that while the setting and tasks that you do for your wife may have changes, your role as primary family caregiver is still vitally important.
By Pat Gibbs, Home Support Consultant, Victoria