Wednesday, 7 May 2014

Caregiver Wednesdays--The institution of home

"I'd never put my mother in a home."

I've heard these words many times, usually said in a sanctimonious, slightly patronising tone. The implication is, "I'm better than that. I value my mother (father, other family member) more than those who make this choice."

In many cultures, home is the only choice. Elders are revered, and caring for them at home is what you do. The elderly person is an integral part of the family, and has a role and position. Their wisdom is revered and their opinion valued. It works.

There are many times it doesn't.

Here are five reasons why:

1) The caregiver is a spouse or sibling who is frail themselves. Caregiving is a demanding task that often involves long hours (including the hours we usually associate with sleep) and physical strength. Caregivers, full of love and willing to sacrifice, simply cannot keep up with the demands of the job.

2) The caregiver is an adult child who has children of their own and a job. They are willing, but must make an income, and are overwhelmed by the demands of work, probably a commute, children and now an elderly parent. The parent is either home alone during the day, or they must hire expensive private care. The elderly parent never sees their friends and is isolated. The caregiver is stretched beyond what is reasonable.

3) If the elderly person has dementia, their behaviours can be frightening and confusing to those who have no idea how to deal with them. Add to this the emotional sinkhole of seeing your parent deteriorate, and not knowing how to relate to them. Then there is the wandering at night. Often, the only answer that seems reasonable is psychotropic or sedating drugs.

4) Isolation is a huge issue. The elderly person may no longer be able to get out independently. Neither can many of their friends. Their word shrinks, and they are lonely and bored. They are in the bosom of their family, but have no one their own age to whom they can relate.

This is a significant problem. In his book Dementia Beyond Drugs, G. Allen Power talks about "social capital." "The new currency won't be intellectual capital. It will be social capital--the collective value of whom we know and what we'll do for each other. When social connections are strong and numerous, there is more trust, reciprocity, information flow, collective action, happiness and, by the way, greater wealth." (Kouzes, 2000)1 Social ties are the key to well-being, and Power sites studies where the lack of these lead to "poor health, depression and more functional limitations...poor quality of life and a 60% increase in the risk of developing dementia." 2 Isolation in the elderly, and particularly those with dementia, can be found in institutions. It is often present in those who live at home.

5) Most caregivers are kind, caring family members who want only the best for their loved one, and sacrifice to look after them.  One of the difficulties of being a family caregiver is the relationship changes. I was your wife, your son, your sister, and I retain that relationship, but I am also your caregiver. Over time, one role can overtake the other. Caregivers can make assumptions about the abilities of their loved one. Perhaps they set the table incorrectly, so the caregiver takes over that job. They are slow in dressing themselves, so the caregiver does it. They need time to make even the smallest decision, so the caregiver makes it for them. This "kindness" strips the elderly person of any abilities (some they still have, just at their own pace and in their own way) and leaves them feeling powerless and useless. They may shut down, or they may lash out. Often, the solution of choice is medication.

What is the answer?

How can we care for our elders in a way that fights loneliness, hopelessness and boredom?

Stay tuned...

1. Power, G. Allen, Dementia Beyond Drugs, p. 71.
2. Power, G. Allen, Dementia Beyond Drugs, p. 72.

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