Unfair as it may seem, even in families of many adult children, one sibling generally becomes the primary caregiver for the aging parents. In many families, such as mine, this person lives the closest to the parents and/or is most suited to the task of caregiver. In my case, it was both. This fact didn't keep my sister, who lived about 50 miles away, from coming to town nearly every weekend to see our parents and help me out. However, in some families, this relatively short distance would be enough of an excuse to keep the "caregiving" efforts of the distance sibling to an occasional, convenient visit.
Many caregivers ask how to respond to siblings who, after being directly and distinctly asked for help, either skirt responsibility with excuses, or become outright nasty if they are asked for assistance in a direct manner.
Let's look at a few examples and contemplate responses. These can, perhaps, trigger ideas about how to handle your unique circumstances:
"I Don't Have the Time"
This excuse is probably the most often used reason for not helping out. The implication in this excuse is that you, the person who has taken on the role of primary caregiver, do have time.
Caregiving can grow from just running a few errands for the elder into a full-time job. Many people have quit paying jobs, or not accepted a promotion, in order to be available to care for an aging parent. From the outside, it looks as though this person has the time. In most cases, the person has made the time, often at great sacrifice.
Unless there's a family agreement, family caregivers don't get a salary. That not only affects their current financial status, but their future, because family caregivers aren't paying into Social Security if they can't work. Therefore, those of us who have given years to caregiving often find our own later years threatened by poverty. Yet, many of us stay home from a paying job to care for an elder; thus we "have the time."
Having the time is also relative in that caregiving is emotionally, if not literally, a 24/7 job. Most caregivers need a break from the stress of the constant responsibility of being the primary caregiver. Siblings could provide that relief, either in person or by offering to help pay for respite care in the form of in-home help or adult day care.
When this option is suggested to siblings, some jump on board, many don't.
Siblings may come up with excuse number two:
"I Don't Have the Money"
Let's say you have a brother in a distant state who says he'd be happy to help out by paying for some respite care for you, the caregiver, but he just doesn't have the money.
Maybe he's right. He doesn't have the money. But there are other ways he can help, if he actually wants to. He can take over some of the bookkeeping tasks that suck time from your day. He can be the point person for sorting through Medicare bills and other health insurance issues. He can, especially in this day of Internet communication, become part of the caregiving unit by providing whatever help he can.
"I Can't Bear to See Mom/Dad Like That"
They think you like it? Day after day you watch the decline. You help them with everything, including very intimate day-to-day functions, such as toileting. Do your siblings think this step has been easy for you?
The first time I took my dad to the bathroom is branded on my brain. Mom had gone out to run an errand and there was no choice. Dad had to go.
I was sick over the thought that he'd find the process humiliating. Thank God, it didn't seem to bother him. But it was very hard on me. This was my dad. Yes, he'd changed my diapers when I was a baby. But no matter how much of him illness had taken, I wanted to preserve his dignity, and having ones' kids take over bathroom duties isn't what most people would want. However, I did what needed to be done, and soon it was automatic. After a time, I never gave it a thought.
Other agonizing adjustments we make as we watch our parents decline include bathing parents, feeding them, coping with irrational outbursts, dressing them, and just about any other duty one can do for a child, without a thought.
Please don't misunderstand. Most of us are honored to be able to help our elders through these stages. It's the sadness of coping with their decline that causes our pain. Don't our siblings understand that we "can't bear to see him or her like this" either? Probably not. Maybe we are just braver than they are. Maybe we are just more "dutiful." Maybe we are just, well, on the spot. Whatever the reason, we step up to the plate and do what is required. If we're uncomfortable, we do it anyway. We get over our discomfort.
Be Direct With Requests for Help
Caregivers should use some insight. We need to examine whether or not we've made direct requests and if we've actually given our siblings a chance to help. Some "outside" siblings complain that they aren't let into the caregiving circle. This does happen. A caregiver who never directly asks for help forfeits the right to complain about unhelpful siblings.
What to Do if Siblings Won't Help Your Parents
This is likely a good place to mention that there are many options, paid and free, for setting up online record keeping so the family can share the medical news and discuss what the parents' needs are.
I found phone calls worked fine for my small family, but many people like the option of a more formal way of exchanging information. Caregivers can benefit from filling out a formal care plan to organize and streamline their tasks and responsibilites. A care plan can also be used to keep family members informed of a loved one's health status and regular routines. Such plans should be updated on a regular basis anyway, and you can easily send the updated plan as an email attachment or via snail mail to interested relatives when something changes.
If your siblings are truly interested, and if they honestly can't give hands-on time or money, by keeping them updated on your life as a caregiver, and making direct requests for help, you may awaken their sense of giving – or guilt. Either works.
What to Do If Direct Requests Don't Work
You've talked to your siblings. You've directly asked them for help, since some just don't see you need it until you ask. You've explained that if they can't offer assistance one way, there are other ways they can help. Still nothing. You either get brushed off or told off. Where do you go from here?
One woman sent me a copy of a letter that she had written to her siblings. In the letter, she wrote that she had tried very hard to let them be part of the process of helping their parents through their last years. She reiterated the requests she'd made and said she accepted their denial. She then, with courtesy, said she would no longer ask for help. She offered condolences to her siblings for all that they were missing and for the regrets they may have later on. She told them she chose to help their parents and thus live a life of peace after they were gone. She signed off lovingly.
The woman then moved on. She went to her state website and found the National Family Caregivers Support Program, from whom she received a lot of practical information. She contacted the Alzheimer's Association and found training and resources. She contacted local senior help groups, got some respite through the local Senior Companion volunteers and she founded a support swap at her church.
This woman made it through without her siblings. She chose to let go of her anger and move on to find help elsewhere. I believed her when she said she was the only one in her family that felt peace upon her parents' deaths. Each caregiver has to know when to fight, and when to give up the battle and move on. There is no right or wrong time. It's up to you.