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.

“Don’t try and do it on your own,” cautions Mary Schulz, Director of Education with the Alzheimer Society of Canada. “Keeping a stiff upper lip, being the good daughter or dutiful wife – that is not helpful in this situation.”

Ideally, says Mary, the primary caregiver will have built and maintained his or her own ‘bridges’ and social network, even if it seemed impossible while caring for a loved one with dementia. And if not, a lot of rebuilding has to happen, which isn’t easy. Sometimes counselling and support groups help and those can be accessed through the Alzheimer’s Society.

“We have to pay attention to this because the day will come when you’re either alone or living a somewhat different life because your partner is in long-term care. You just can’t put people on ice. You’ll need your friends during this new phase of life. It’s not a welcome phase or a happy phase, but caregivers need to learn ‘how can I still be helpful to Joe, involved in Joe’s life and be the loving supportive person I want to be, but still have a life that’s for me’.”

hands-2Staying 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.”

Yet there is meaning, insists Mary – as long as you adjust your expectations.

“We know that people with dementia, even in the later stages, can be reached. We may not always know we’re reaching them, but they can be reached. Research shows different parts of their brains do light up. People are still people and there is a core that can be touched.”

The trick, says Mary, is to adjust your expectations of a visit. “Maybe Mom is happy sitting at the window for hours on end staring at the bird feeder. That’s not particularly stimulating for you, but if you’re able to see your mother enjoying it and you can just stroke her hand or her hair, well that’s a moment of closeness. And maybe your visits are now 15 minutes, not an hour and 15 minutes. Later on you’ll look back on those moments as quiet times when you were just able to be together.”