Ursula has been so generous about letting me use her story and now I’m going to be even more intrusive. I’m sure you’ve wondered about the baby’s father. He’s there, back in Europe, but he hasn’t been able to accept the idea of a baby. Their story reminds me so much of caregiver’s stories about those relatives that resist the idea that their loved one might have LBD that I asked to tell it.
They were both successful journalists, traveling all over the world for their stories. Children weren’t an issue--Ursula didn’t think she could get pregnant. And that was all right. She was 37. She loved her job. She loved spending time with (we’ll call him Jack) when she was home. Life was good. But then, she did get pregnant. As the baby grew inside her, Ursula became dedicated to being a parent. Jack pretended nothing had changed. When, at about 6 months, the doctor told her she was risking a miscarriage if she continued working, she quit and started living on her savings. Jack just wanted things to continue as they had. He was blind to her internal changes and because Ursula still wasn’t showing much, it was easy for him to minimize the ones he did see. Ursula left, coming here, where her American family offered her the support she wasn’t getting from Jack.
As the LBD gradually changes your loved one from an independent, reasonable adult into a sometimes disagreeable, sometimes irrational, sometimes even violent, and always increasingly helpless person, you are there. You see and experienced the changes. But like Jack, others in the family may be blind to the changes, minimizing those they do see. “Oh, dad is just tired. We all get cranky when we are tired.” “No, Mom’s not seeing things. She’s just making it all up to get your attention. She’s always been imaginative.” “It was just a bad dream. See he’s fine now.” Like Jack, they are trying to keep things the same. And it isn’t working for you. Like Ursula, you feel unsupported and angry. And you hate feeling angry at people you love…but there it is.
After her difficult delivery, Ursula told Jack about it and the frustrations of being a new mom. She wanted to be able to voice her feelings of weakness, inadequacy, and pain and get understanding from him. Instead she got pep talks. “You are courageous and strong. You can do it.” She wanted him to share her extra expenses. Instead she got weak promises.
On the job caregivers often say of their resistant relatives, “They don’t understand. They tell me they are so glad I’m here, but they don’t offer practical help—money, things to make my work easier, someone to come and stay so I can get away for a while. They think they are supporting me when they tell me I’m strong, that I can do it. But that just makes me continue to feel unsupported—as though they don’t think it is as hard as it really is. I need acceptance of what is, not what they want it to be.”
Ursula did have other support: people who stepped up with practical help instead of platitudes and promises: her “American family,” her mom who flew in from Europe, and even some neighbors. She hesitated at first—she had her pride and was used to being independent. “You have your lives to live,” she insisted. But none of us would have offered if we hadn’t meant it. And so she got the support she needed—not from where she wanted it, but she did get it—or at least enough for now—and we got to enjoy her and our sweet Baby Ian.
Such help is often available to caregivers too. When caring family members, neighbors and friends offer help, it is real—offered in love and concern and shouldn’t be rejected out of pride. Take advantage of this. It may make the difference between keeping your loved one at home or not. But don’t expect them to know what you need. Be clear and concise. Ursula learned that telling her mom she needed her to get up at night when Ian cried and hand him to her to nurse worked much better than saying how much it hurt to get up and expecting her mom to know what she needed. Leave out all the whys. Those are clear enough already. And don’t worry about being able to repay; you can pay it forward eventually. Or, many cases as it was in ours, just the experience is pay enough.