{"id":5534,"date":"2019-05-07T12:42:03","date_gmt":"2019-05-07T16:42:03","guid":{"rendered":"http:\/\/www.silvercentury.org\/?p=5534"},"modified":"2019-05-07T12:42:03","modified_gmt":"2019-05-07T16:42:03","slug":"going-it-alone-in-a-job-much-too-big-for-one-person","status":"publish","type":"post","link":"http:\/\/78.142.243.82\/~silvercentury\/2019\/05\/going-it-alone-in-a-job-much-too-big-for-one-person\/","title":{"rendered":"Going It Alone in a Job Much Too Big for One Person"},"content":{"rendered":"

When people develop dementia in the United States, we rely on their families to take care of them. And a family member, most often a spouse or a daughter, almost always does step up. <\/span><\/p>\n

Then, as a culture, we appear to consider the matter solved. But it\u2019s not. Forty-one percent of Alzheimer\u2019s family caregivers get no help from other family members or friends. <\/span><\/p>\n

And caring for someone with Alzheimer\u2019s is a job too big for one person. <\/span><\/p>\n

The duration of Alzheimer\u2019s from onset of symptoms to death is between 10 and 20 years. Over that time, the disease gradually causes extensive disabilities, not only problems with thinking, memory and judgment, but also physical disabilities that leave people unable to walk or feed themselves and make them totally dependent. Added to that are behavior changes that can be baffling and challenging to respond to well. <\/span><\/p>\n

People with dementia often have little awareness of how much their caregiver is doing for them.<\/span><\/p>\n

A woman I knew had a bowel accident and her daughter was cleaning it up when her mother complained loudly, \u201cAren\u2019t you going to feed me any lunch today?\u201d It took all of the daughter\u2019s patience and compassion to remember that \u201cshe can\u2019t help it; she doesn\u2019t understand,\u201d and not react angrily. <\/span><\/p>\n

The relationship between care partners inevitably changes as one of them not only grows increasingly dependent but loses the ability to empathize. A caregiver without any help or support is left feeling terribly lonely. <\/span><\/p>\n

In addition, being the sole caregiver means, after a point, bearing the heavy responsibility for making all the decisions alone about a loved one\u2019s care.<\/span><\/p>\n

For caregiving spouses, it also means that a myriad of tasks land entirely in their laps, not only the caregiving tasks, but the household responsibilities that used to be shared. Whether it is cooking and laundry or banking and yard work, the well spouse is saddled with all of it now.<\/span><\/p>\n

How is it that so many caregivers end up doing all this alone?<\/span><\/p>\n

Here are some examples from families I\u2019ve known in the support groups I lead.<\/span><\/p>\n

Alice (not her real name) cares for her husband, Dan, alone because their two grown children live on the other side of the continent. Dan\u2019s dementia makes him too anxious to travel, so now their kids come twice a year to visit them. Alice doesn\u2019t use that time for a respite because she wants to visit with the kids too.<\/span><\/p>\n

This is a second marriage for Jim and Barbara. Jim has Alzheimer\u2019s and Barbara cares for him alone. His children feel no loyalty to her and are mainly interested in keeping an eye on how she spends their father\u2019s money. Her children are still angry with her for marrying him. <\/span><\/p>\n

Gertie and her two brothers all live close to their parents. Their mother has Alzheimer\u2019s and their father is so frail he\u2019s unable to care for her. The sons feel caregiving is a woman\u2019s task best left to their sister. Their contributions are limited to handling the finances and cutting the grass. <\/span><\/p>\n

Meg moved in to take care of her mother after she was diagnosed with Alzheimer\u2019s. Meg\u2019s sister lives 100 miles away but feels that their mother already belongs in a nursing home, so she declines to help.<\/span><\/p>\n

I\u2019ve seen situations like all of these more than once. In some cases, a<\/span> realistic assessment may lead to the conclusion that trying to deal with a difficult sibling is more stressful than continuing to do the job alone. But other conflicts over caregiving may be amenable to mediation. A qualified mediator, such as a geriatric care manager, can meet with a family and help them divide tasks more equitably. But everyone involved must want this solution to succeed.<\/span><\/p>\n

If 41 percent of caregivers <\/span>don\u2019t <\/span><\/i>have any help from a family member<\/span>, <\/span><\/i>then 59 percent of caregivers <\/span>do<\/span><\/i>. Typical ways family members pitch in are the following:<\/span><\/p>\n