Expect tears, exhaustion, anxiety and guilt.
Know that you feel that way because you care and want the best for your loved one.
So says Nancy Luber, a specialist on aging at the Johnson County Mental Health Center, who works one-on-one in offering counseling to caregivers and their families. Many, she says, find themselves emotionally depleted and at odds over the decision to place someone in long-term nursing care.
“I do see caregivers who are struggling with that decision,” Luber said. “People tend to put that off longer than they should.
“I think they want to feel that they did everything they could to honor their loved one, their spouse, their parent’s wish to stay in their home as long as possible. I think maybe they feel some guilt that ‘I didn’t do enough. I could have done more.’ Sometimes people think that someone else is going to tell them that it’s the right time to put them in a nursing home.”
That decision is individual and personal. A big mistake, she says, is to compare yourself to others whom you hold up as more noble or self-sacrificing than yourself because they were able to care for a loved one longer.
“There is no single right time or single reason for nursing home placement,” she said. “Comparing yourself with someone else or others just takes us down the wrong path.”
A few keys may help make the decision easier:
• Define, set and come to terms with your own limits. It is equally important to discuss those limits with other family members.
For many, that limit is physical. The time for long-term placement comes when the caregiver no longer thinks he or she has the physical capabilities to care for a loved one properly. They just can’t do it any longer. Frequently, caregivers imperil their own health for months or even years before deciding to seek outside help or place a loved one.
For others, the limits may be emotional or psychological. The caregiver is simply at his or her wit’s end. Luber said it is common for caregivers to admit to having disturbing thoughts about those they care for, wishing the problem would be taken off their hands.
“They are not a bad person for thinking, ‘When is this going to end?’ Being angry is understandable,” she said. “We tell people when you have those strong emotions, it is a sign that something needs to change. It could be a sign to ask for help.”
• Talk to family. Nursing home placement is a family matter. Let them know your limits. Open and honest communication about where you are now helps everyone prepare for the future. Also realize that everyone has his or her own way of expressing concerns and grief. What you see as interference just may be their way of helping or dealing with difficult emotions. If you need family to help, don’t expect them to read your mind. Be specific. Ask.
• Give yourself permission to feel OK. Not everyone is going to agree about the right time for long-term nursing care or placement. “Sometimes we have to do what is right for ourselves and our loved one and be OK with the fact that not everyone agrees,” Luber said. “Give yourself permission, again, to set limits around people. It is OK to not have to explain your reasoning and rationale with everyone. You don’t have to justify your decision to all the extended family members.”
• Know the landscape. Start the process early. Making the decision is going to be hard no matter what. But preparing early by visiting nursing homes, talking to financial advisers and discussing choices with family should lessen the emotional difficulty that comes with making these choices in a crisis.
• Know the illness. Knowing its progression can help determine expectations and plans for the future.
• Seek out options. Long-term nursing care is a choice, but there are others such as home-based care, adult day care or assisted living that could help ease the transition from your home to a nursing home.
• Accept that no place is perfect. No single nursing home is likely to be all you want for your loved one — perfectly situated 2 miles away, perfect care, cozy with a staff as loving and attentive as family. Knowing that all long-term facilities will have their pros and cons can help ease the burden of the decision.