Coping with the Long-Term Care Decision
How to handle the loneliness, stay connected, and manage expectations
So the decision has been made. Recognizing you can no longer manage your loved one’s dementia, it’s time for long-term care. Now what?
No matter how much you’ve thought about it, it’s difficult to prepare for the reality. With this dramatic life change come an avalanche of new feelings, reshaped routines, profound loneliness and unforeseen challenges.
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Maybe you’re the husband still at home (72 per cent of people with Alzheimer’s are women) or maybe you’re the wife or the daughter.
Either way, experts agree one of the best ways to deal with the change is to stay connected with friends and family and perhaps connect with others who’ve experienced it themselves.
Staying connected with a loved one in care will also be a new kind of challenge – but also an opportunity. “On a practical level it’s about being that resource to staff at the nursing home and encouraging them to ask questions and use you as a resource so you can work together as partners in care,” says Mary.
“It’s also about accepting the fact staff won’t be able to care for Joe exactly the way you have as his wife. It doesn’t mean they don’t care, it’s just the reality. Hopefully, they’ll be able to provide care that is uniquely good for Joe, but they’re not going to be able to make him the focus that you’ve made him.”
And be careful, cautions Mary, not to let your grief translate into anger.
“You can’t come in with this aggressive attitude and say ‘you better care for Joe the way I cared for him and I’m watching!’ Yet we often see that and it’s not helpful. It’s borne out of the guilt and the grief that translates into aggressiveness and policing. It puts everybody on the defensive.”
Family and friends are also encouraged to keep visiting the person in care – even if he or she doesn’t know who you are and it’s impossible to have a conversation. “Staying away comes from the tremendous grief that goes hand in hand with dementias. We call it ‘ambiguous loss’,” explains Mary. “It’s that notion that you’re grieving your father’s own losses, plus your loss of him as you’ve known him. That grief can be so pervasive you can’t bear to see him. You can’t see anything meaningful at this stage.”