A friend came over before Shayna’s son’s wedding and told her she would not leave until Shayna gave her a list of things to do.
Transcript
Yes. What is helpful is specifics. Don’t say, “If you need me, call me,” because the caregiver probably will not call unless they’re older, and it’s not taken as a sincere invitation. It just isn’t. Calling up and saying, “I’m bringing dinner at 7 o’clock, let me know if it’s inconvenient?” Or before, as I said, my son… my husband was in the hospital in intensive care before my son’s wedding, and a friend came over—and I’ll never forget this—and said, “I’m not leaving until you give me a list of things to do. I know you must be going crazy for the wedding. You give me a list, and I will just take care of it.”
You need to be specific. Take the children out. We were a religious family, so we sit separate in synagogue. If my husband couldn’t go to synagogue, my son was alone. So unless somebody is there to be a pseudo parent, it’s horrendous, it’s horrendous for the child. If somebody isn’t willing to be a big brother, or “come with my family,” or whatever in terms of worship, in terms of the holidays. Be specific. Think of what’s not happening and offer that. You’re going grocery shopping; call up, “I’m at the store. What can I pick up for you?” “Can I do your car pool?” Or get together with a group if there are young children. That would have meant the world to me—that car pool on top of delivering my husband to work and getting myself to work. It doesn’t even have to be all the time, just once in a while. I remember once, I had gotten my husband in the car and I was struggling to get the wheelchair in the trunk before we had the accessible van, and a stranger came by and said, “Please let me do that for you.” No one had ever done that for me. I just stood there. The feeling, the euphoria I got because someone picked up this wheelchair. Just look and see what’s going on. Carry groceries into the house. There’s so many little ways you can help a family in this situation. You just have to look and think, “What would I do in this situation? What would I need in this situation?” But be specific and don’t give the onus to the caregiver. “Call me if you need something.” That’s horrendous.
More content
- What is it like to be a caregiver? – Shayna Caring for someone with a chronic illness meant that Shayna was making different decisions from other families.
- Uncovering how and why caregivers care – ShaynaShayna started by trying to do everything, but realized later that it is hard to change.
- Society and caregiving – ShaynaWhen you are living with someone with a chronic illness, you cannot always do things in a ’normal’ way. Shayna learned that people can respond very strongly to this.
- Social impact and lifestyle changes – Shayna (2)It can be challenging for children to grow up in a situation where one parent is sick and needs continuous care. Shayna tried to find the right balance with her family.
- Social impact and lifestyle changes – 2 – ShaynaFor her son’s wedding, Shayna wrote a letter in her husband’s name to ask people to enjoy the day so his absence would not be a source of distraction.
- Resources – ShaynaThanks to the adjustments made through a government program, Shayna and her husband maintain a higher level of independence.
- Interaction with professionals – ShaynaShayna describes two negative encounters with health care professionals that had an impact on her husband’s ability to deal with his illness.
- Impact on professional life and career – ShaynaAt times, Shayna’s caregiving responsibilities affected her performance at work.
- Health system issues – ShaynaPrograms that help the care recipient remain functional in society are indispensible. Shayna finds it important to see the bigger picture.
- Effects of care recipients’ behaviour – ShaynaShayna says: "It makes a tremendous difference for the caregiver if the care recipient recognizes the caregiver’s efforts and well-being."