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Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.
My Wife Won’t Let Me Help Her In Hospice
Dear Ada
My wife has been living with cancer for years, and as much as I hate admitting this, we’re at the end of this fight. She’s on hospice and she needs a lot of care to function throughout the day. But, I feel like she’s nearing death and pushing me away. I try to help her with her care, such as washing her body or helping to feed her, and she refuses. She gets so frustrated that she even kicks me out of the room or won’t talk to me for the rest of the day. She doesn’t act this way with hospice or the extra help we’ve hired. I don’t know what to do. We’ve always had a caring and communicative relationship, and now — well, our time is almost up. What do I do? How do I get her to communicate with me again? I want to enjoy her before I lose her.
Distraught Husband
Dear Husband,
Have you considered that your wife doesn’t want you to see her body as it’s failing? That she doesn’t want your last memories of her to be of you taking care of her? That she’s embarrassed or depressed by her inability to take care of herself? That your help is just a reminder of all that she’s about to lose?
You love your wife, and you want to attend to her every need right now because you support and care for her — that’s obvious.
But the thing is, she doesn’t need you for that. You have hospice workers and hired help that can help to make sure she is fed, cleaned, and comfortable. Let them. It might mean you need to step out of the room when the workers are adjusting or cleaning her. She might need some privacy.
What you can do is show up as her husband. The boy who wooed her when you were only dating. The young adult who promised to be there in sickness and in health, in good times and in bad. The man who grew up with and built a life with her. She wants his presence in her final days, though she might not know how to ask for it.
What you can do is show up as her husband… She wants his presence in her final days, though she might not know how to ask for it.
You’d know your wife best. Take a moment to think about what type of bonding she’d feel comfortable with at this point.
Does she have enough strength to get up and move around? If so, ask her to dance to your wedding song with you. Dance every day until she’s no longer able.
Were either of you memory-keepers? Take out the old scrapbooks and photo albums and go through them together.
Did you spend your days talking with each other? Start a conversation, any conversation. At this point, anything is game. You’ll both find solace in ordinary conversations about local events, and your love might grow even deeper by discussing some of the more major moments of your life — the good and the bad.
One more suggestion: think back to the arguments you’ve had with your wife in the past. What were some of the common themes she’d mention that were brought yo again and again. Was she upset that you stopped bringing her flowers once you got married? Bring her a new bouquet every day. Did she feel that you cut her off when she was speaking? Make a sincere effort to let her speak without being interrupted now.
And finally, don’t shy away from doing or saying anything that is on your heart. Tell her how you feel. Hold her. Hold her hand. Tell her you love her and cherish every single moment you have left together.
My Student Has Autism: Help Me Connect With Him!
Dear Ada,
I am a nanny/babysitter and I’ve been working with children for the past 5 years now, so I feel usually confident that I’ll connect with each child I watch. Recently, I accepted a long-term after school babysitting gig in which I will be working with an autistic boy from when his school is over until when his mom gets home from work. We’ve only been together a few times, but we’re not connecting! This is new to me. I understand that he’s cognitively a bit different from some of the other children I’ve worked with, but I don’t know how to make him feel comfortable or interact with him. He seems happiest when I leave him alone to do his own thing, but I feel bad that we’re not interacting. What should I do? I haven’t spoken much to his mother about it because I don’t want her to think I’m complaining.
Babysitter Who Wants to Connect
Dear Babysitter,
If you’ve only worked with this child a few times, know that the two of you will eventually find your groove.
You’re feeling unsure now because you’ve likely built connections with other children you’ve babysat by relating in a manner that’s easy or familiar for you — whether it be helping them with their homework, doing arts and crafts together, or joining them for pretend play.
Now, though, you’re working with a child who cannot connect in the same manner as you’re trying to. He isn’t going to change the way he communicates, so it’s up to you to adjust your expectations and tailor your approach.
You can do two things: talk to the mother or talk to the boy. I’d advise you to do both.
If you approach the boy’s mother with a genuine interest in wanting to learn how to connect with her son better, she isn’t going to view you in a negative light. Tell her that you’re enjoying your work, but because you cannot connect in the same way that you’ve built relationships with other children, you’d love her guidance as to what you can best do to support her son.
First, ask her what her expectations are. You might find that they are vastly different than yours. She might simply want someone to be there to ensure he is safe while she is gone, but know that her child can easily (and preferably) manage his daily routine independently. Or, you might both be on the same page, and she’ll want you to spend more one-on-one time with him. If this is the case, then she’ll need to help you understand him better so you can be successful.
Remember, autism is not one singular disorder, it is a spectrum.
She should be able to fill you in on the ways he prefers to communicate, his special interests, and any routine-related activities you should know about. Remember, autism is not one singular disorder, it is a spectrum. Because of this, his cognitive functioning, social skills, sensory reception, language abilities, and more, are individualistic. The only way you can meter yourself to match his communication style is to be well-educated by someone close to him, like his mother, or to learn it on your own, which could take an extensive amount of time.
I think there’s also value in talking directly to the boy you watch about how he prefers to communicate with you if possible. His age or cognitive abilities might prevent that, but it’s important to give him some authority over himself. Ask him what type of and how much contact would make him feel good. Discuss how he’d like to structure routines, and let him know that not only are you there to be an adult figure while his mother is away, but that you’d like to get to know him personally and form a relationship with him, in whatever manner he’s comfortable.
If he and his mother determine that him being on his own and not interacting with you to be the best approach, then make an effort to get comfortable with it and know the separation doesn’t reflect on your childcare skills in any way.
Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.
