Burden or caregiver?

report on elderly parents of individuals with Down syndrome living longer lives offers a perspective for expectant parents to consider.holding-hands.0212

A century ago the average lifespan a person with Down syndrome could expect was only nine years. In the 1980’s that average increased to the 20’s. Now, the average lifespan is approaching the 60’s.

Nothing has changed about the extra 21st Chromosome that is the genetic cause for Down syndrome, just how society treats those with Down syndrome. Instead of being warehoused and forgotten in institutions; instead of not receiving needed medical treatment; and instead of not having access to public education, individuals with Down syndrome are living longer, fuller lives than ever before.

But, this longer lifespan has had a negative perception among some expectant mothers.

Of the few studies of those mothers who opted to terminate their pregnancies after receiving a prenatal diagnosis of Down syndrome, one of their top concerns is the “burden” their child with Down syndrome will be on their existing relationships with their spouses and other children. Another top concern is, with their child likely to outlive them, who will care for their child when the parents pass away?

The latter concern is likely the concern of all parents, wanting to ensure their children are taken care of no matter how old they are. Similarly, if parents stopped to think about it, they would wonder what impact adding any other child–with 46 Chromosomes or 47–to their family would have.

But, a news report shares insights that these expectant mothers worried about burdens and caregiving may not have considered.

Liz Szabo, a reporter for USA Today who has written on Down syndrome, focuses one of her reports on what impact elderly parents are experiencing who have children with Down syndrome. These parents share the same concern of all parents about who will care for their children who outlive them. But here’s what else is shared in the report:

  • “Jeanne Swiatowiec has never felt the loneliness of an empty nest, although she has been widowed for 30 years and three of her children are married. Swiatowiec, 78, still shares her home with her daughter, Beth, 43, who has Down syndrome. * * * ‘All my friends say I’m lucky to have her for company,’ says Swiatowiec, of Chicago. ‘It’s never lonesome around the house.'”
  • “Yet caregiver relationships can be complex, [Marsha] Seltzer [, director of the University of Wisconsin-Madison‘s Waisman Center, which focuses on developmental disabilities] says. Adults with Down syndrome who live at home often help care for their elderly parents with great devotion. ‘It’s a blurry line about who is the giver of care,'” Seltzer says.”
  • Seltzer’s research also suggests that most siblings embrace their roles as caregivers.”

“A blurry line about who is the giver of care.”

When a prenatal diagnosis is delivered, it’s understandable that parents will be anxious. Who will care for our child after we’re gone? Will he or she be a burden on our other children?

Szabo’s article shares another perspective that they may also want to consider.

  • This child may allow us to never feel alone while our other children leave our home.
  • This child may care for us when we are old.
  • Our other children may embrace caring for this child.

Perhaps expectant couples will consider these possibilities of raising a child with Down syndrome and reconsider whether their child will be a burden on them or will their child be a caregiver to them.

Comments

  1. In Western society independence has become very important, while some places in the world still value interdependency within families and communities. We need to re-discover how much richness it adds to our lives to care for, and need each-other.

  2. I am the youngest of 4 children and my brother Tim was born 3rd in line with DS. He passed away recently at the age of 60, and all three of us kids fought after both my parents passed away who was going to get Timmy. Tim was born at a time when doctors thought they should be “put away” but my parents refused and he was brought up right along with us and was loved and cherished and taught us so much! Mom cared for him up until her death at age 86 she insisted and she wanted to, of course they lived with me and I let her I couldn’t take that away from her. They needed each other. He died 1 yr after her and I believe it was because he still needed her mothering love.

  3. One of the large-scale issues facing the down syndrome community is what to do with the many adult down syndrome persons who suffer from Alzheimer’s and need constant, around-the-clock care. In the article that Leach mentions, an expert talks about the difficult that DS persons have with this transition — from constant care in their familiar home to that of a group home full of strangers — “For people with Down syndrome, middle life — the age at which they seem to age so suddenly — can be an especially stressful time, says Mary Lou Oster-Granite of the Eunice Kennedy Shriver National Institute for Child Health and Human Development.” Moreover, according to article after article, there simply aren’t convalescent homes available to serve the specialized need of DS patients, and the few that cater to them are full and have long waiting lists. In California and throughout the country, the refrain is the same: “”What is going to be a challenge in this subgroup population {DS] is they will have nowhere to go, because their caregivers are aging, and their siblings are not around,” said Dr. Sikander Kajani, who specializes in geriatrics and is with Northridge Hospital Medical Center.” In my opinion, we are nearing a crisis point as a society regarding the caregiving of these adult children with DS who require constant care for nearly a third of their life, as Alzheimer’s sets in when they’re in their 40s. Many a family simply doesn’t know what to do with their adult child with DS and Alzheimer’s (see the Chicago Tribune article “Down Syndrome and Alzheimer’s: A Double Burden”). The DS community needs to move away from its grandstanding on abortion and DS and instead focus on real, living DS human beings who need help: DS adults who have no where to go, and DS family caregivers who are incapable ,or simply unwilling, to provide their constant 24/7/365 care as they age.

    • If you are saying more needs to be done to provide better care for individuals with Down syndrome and the national advocacy organizations should make this a priority, then I don’t disagree at all. If, you are suggesting selective abortion is justified because of an inadequate system of care, then I disagree.

      • Well said Mark. Could not agree more. In this reasoning we should detect every possible ‘problem’ with human life, including genes for illness, aggression, criminal activity and abort accordingly. Aging, illness, criminal behaviour are all part of life, we need to deal with this the best we can and fight for a better social structure.

      • This, timeless, documentary (2009) about an aging man “Norm” who has Down syndrome and lives with his adopted sister was broadcast by CBC some years ago. Yes, the topic is difficult, but far from being a drama the documentary celebrates life and unconditional love. Even with his health declining, Norm brought the family together and made them realize what is essential. This movie has won many awards is a ‘must see’ for anyone with an interest in Down syndrome, Alzheimers or love (plus my daughter is in it!). http://tvfinternational.com/programme/17/norm

    • While I know people who disagree about terminating for Down Syndrome mean well – I don’t mean to offend anyone – sometimes I don’t know if they think through the consequences of bringing someone with those setbacks into the modern world. According to many of the medical statistics I’ve read about this condition, DS comes, many times, with health problems and mental issues that are very expensive and time consuming to treat, which might not be feasible for working class parents, and Down Syndrome is a spectrum of disorders; some are healthy and can function in the low-normal range of functioning, able to live semi-independent lives, while others are so disabled they will never learn any life skills or be able to speak. It’s a gamble.

      As for my own experience with Down Syndrome, I can’t say it’s rosy. My cousins’ half-sister has a more severe form of DS, and is institutionalized because she’s in her 40s and too disabled to live anything resembling an independent life. Both sides of her family have abandoned her to the state, and rarely come to visit, which is where she will likely spend the rest of her life. The darker side of this condition needs to be discussed as well.

      • Most current research shares it costs about $80/month out of pocket more in healthcare costs for having a child with Down syndrome. As you recognize, there is no way to predict how DS will affect a child, but (again) most current research shows that parents, siblings, and the individuals themselves value having a loved one with Down syndrome, and that is regardless of whether the child is considered high or low functioning. Plus, since you can’t predict, then there’s no way to predict what “the consequences of bringing someone” with DS “into the modern world” (the same goes for each one of us, actually). Lastly, in the modern world, institutionalization is no longer the standard recommendation as it sounds like your cousin’s half-sister’s family was advised; moreover, the more involved the parents and family, the better off for the child, which, again, sounds like your distant relative’s family did not provide. Rather than base opinions on what lives may be better off not being born on out-dated research and a sample-size of one for your personal experience, the more informed, responsible, and ethical approach would be to study up on the research and then get to know more people with whatever condition you may wish to render an opinion on whether they should be born or not.

        • What usually happens with the low-functioning ones when they can’t live on their own? In your experience do they stay with their family or are they sent to an institution?

          • There’s no one-size fits all, since we’re talking about individuals and individual families. From my experience, it’s generational: older individuals and older families are of the generation where institutionalization was the norm, so they are more likely to access it; younger families with younger adults, the norm is living at home or in a group home in the community. But there are exceptions to these generalities with older families having their adult child stay with them even when placement in with a residential provider might be in the interests of everyone involved.

  4. I forgot to ask in my other post, but how does the 80$ a month out of pocket work? Do most come from the insurance provider or can the parents pay the amount themselves? And what if the parents are poor and can’t afford insurance? Also, how do parents of lower means pay for various therapies children with Down Syndrome require, and health needs?

    • See this link on the $80 out-of-pocket cost. By federal law, children with Down syndrome receive means-tested early intervention therapies from birth to age three, then have access to head start preschool programs where therapies are provided through the public school system which then continues as the child ages into K – 12. Depending on the state Medicaid program, children can also qualify for low or no-cost additional therapies provided through a provider that accepts Medicaid. And, families of all means can also choose to supplement all of this with private-pay therapies.

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