By Carol Bradley Bursack
Did you think you left the sibling rivalry behind when you all left the nest? Did you dream that if and when your parents got old and needed help, you’d all pitch in? Did you envision snug discussions about who would do what when the folks eventually needed help?
Dream on. While researching Minding Our Elders: Caregivers Share Their Personal Stories, I found that in about 75 % of the cases, the majority of elder care fell upon one adult child. And it wasn’t always the child that was geographically closest to the parent. Susan, who drives 600 miles round-trip when she sees her mother, has problems with her siblings, two of whom live in her mother’s town. Susan said, “Ron (her brother) and my youngest sister, Marge, live in Minot, where we grew up and where Mother still lives. But they stay pretty aloof from her problems. Marge teaches nursery school and has young kids, so she’s busy. Ron just can’t deal with it.”
What does this mean? It means that everyone has, for some reason, decided that strong, opinionated Susan will handle it. Susan has Power of Attorney and does the financial work, so she has been, by default, the designated caregiver. The siblings in town visit their mother when it works for them and they feel they can emotionally “handle it.” But Susan is left holding the bag, and occasionally driving through deadly blizzards, to do the regular errands, favors and decision making that is a necessary part of caring for an ailing parent.
Ann, another woman I interviewed, said, “Maybe it was the makeup of my family that always made it easy to put myself out for others. There were four kids in our family, the oldest was my sister, then the two boys, then me. I think by the time my parents got to me they just wanted peace. Because of that, I think I kind of felt responsible for them.”
She continues, “The problems go way back before Dad died. Mother had cancer surgery and chemotherapy here in Fargo. My brother would drive her to my house on Monday (50 miles) and his wife turned him into some kind of hero for this one contribution. Mother would stay with me. I would take her for treatments, help her through the vomiting and pain, try to comfort her. It was so awful. But in all the weeks we did this, only once did my brother’s wife take a meal to Dad, who was right there in (their) town. And no one helped them on weekends when she was back home, still sick, knowing she would have to go back for more on Monday.“
I don’t know, maybe I haven’t given them a chance. But we’re too old to change. There’s no use beating a dead horse. My husband wants me to confront them or quit talking about it, but I don’t think that would do anything but make them bitter.”
Many families have the natural “giver,” a people-pleaser. This person is a good person who, sometimes, takes the giving role over the edge into martyrdom. Possibly, underneath it all, this obsessive caregiver is still struggling for the parent’s love. This can happen in seemingly normal families but It can happen in estranged families where children don’t feel loved and valued, as well. They keep trying to get that love, even from a parent living in the fog of severe dementia. It’s a love they may never have validated. But they still try.
I spent two decades caring for seven elderly people. My sister was out of town, but very helpful, traveling 50 miles every week that she could to visit with our parent. But still, I was in town so I felt the need to visit and care for the elders every day – yes, that’s right, every day – for nearly twenty years.
I missed very few days. During some of those years, I was going to three different places every day - my mother’s apartment, my in-law’s apartment and the nursing home to see my dad and my uncle. Even after the last three elders were in one nursing home the caregiving didn’t stop. As it shouldn’t.
Many people have the view that if you’ve placed your elders in a nursing home, you are free from the caregiver’s role. That is not true. Yes, you have more help than you had before. Your loved ones are in a safer environment than they were when alone. Yet they still have individual needs that cannot be met by a facility, and they have an even stronger need for family connection.
Also, by law, the facility must notify you of every fall, medication change and significant health change. Often, the dreaded red light on my phone was blinking as I walked in and I instinctively knew it was a message from the nursing home. It meant a rush to the emergency room because one of my elders had fallen. Or other unwelcome news. They never just called to chat.
Emily, who also talked to me for Minding Our Elders, spent seventeen years caring for her parents. Many of those years she spent caring from a distance. While Emily was very concerned that she not sound like she was complaining, she did have sibling issues. Emily said, “My siblings wanted to keep Dad at home as long as possible. I understand that, but even though they were good about going to see him – and they did a lot – I think they don’t realize how hard it is when you’re the one that all the responsibility seems to go to. The one arranging everything, getting all the mixed up and angry phone calls at night, driving every couple of weeks, giving up this time with the kids.”
Emily puts it very well. Nearly every family has one person on whom the major responsibility falls. Whether the family is openly quarreling or just oblivious to the stress this responsibility puts on a sibling, it’s a huge issue that needs to be addressed. Ideally, there could be a family meeting where issues are hashed out and everyone is assigned a role. Sometime this works, but most of these people had already tried this version of that “best case scenario.”
Some families go so far as getting family counseling. Again, though this is more dramatic than a family meeting, it’s also fairly obvious, and usually doesn’t happen or doesn’t fundamentally change things if it does. So, from the practical point of view, the primary caregiver is left to fend for him or herself. This means setting boundaries, insisting on getting respite help from outside the family and talking to other caregivers.
Support groups work. Reading support stories works. On-line support chats work. These things work because they decrease the loneliness of the primary caregiver. The caregiver knows they aren’t the only person to think less than generous thoughts. They know there is a fellowship that understands the stress they go through which is often something their siblings can’t get.
Primary caregivers need to self-identify. They need to realize they are going through a grieving process as they struggle to care for the elder. And they need to get help from every source available. If you can’t get out, hit the computer. There is much help on-line. You'll find many resources and links to resources on Minding Our Elders and Minding Our Elders Blog. Welcome to our world where we learn to realize that it doesn’t matter who Mom seemed to love best. In our world, we struggle to take care of ourselves while we remain the primary giver - the caregiver.
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