Who Gives Care?

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By Norma Buchan

I am a nurse by profession and understand how the health care system works. This did not prepare me for when my husband became ill.

Over the last seven years I have learned from experience that few people who do not live this life understand the effect illness of a family member has on other members of the family, particularly women.

The changes can be simple. We no longer attend fairs and festivals, or go shopping in the malls, because Peter can't walk any distance. Family traditions change - you don't throw the party. Sports events or the theatre are avoided if you can't be sure of parking, walking distances, or steps. Travel and vacation options change - you can't set up the camper, or get medical coverage for another country.

Your friendships also change. People you would have expected to be supportive disappear from your life, while new friends appear.

While there are obviously exceptions, the major work of caregiving falls on women, if the ill person is elderly, a child, or a partner. This is true even when extended family members are nearby.

Your social life changes, if your partner can't go, you likely don't go either - it's not fun to attend events knowing your partner is at home alone.

Women can be overwhelmed by the responsibilities of making major and minor decisions on their own. Do we change houses to accommodate the care? It would be nice if someone else decided what to have for supper for a change. When is it time to move the ill person into personal care? Are the wills made?

Women who have never worked outside the home can find themselves in the workforce, while others quit work, or take early retirement to assist with the family situation.

The additional costs of illness puts a strain on most budgets. It can be difficult finding $600 a month, for several months, to cover medication costs before Pharma-Care kicks in. Supplies that institutions can buy in bulk are much more expensive for the individual.

Increased dental bills, often from side effects of medication, can add thousands of dollars to the family budget. Particularly when dental benefits have been lost due to the illness.

As caregivers we often delay making decisions that will have long term implications for our own health, lifestyle, and financial status, so as not to hurt our partners' feelings.

We also hesitate to ask for help. Sometimes caregivers don't know what services are available. For others negotiating the maze to get the help needed is too difficult. Or the help that is available isn't what they need.

Pride is another reason - "I've always been able to look after myself." Isolation, loneliness, and fatigue compound this.

Health care reform is frequently spoken of as wise economic policy and as something that really must happen if we are going to survive as a nation. Most of these reforms have taken place on the backs of women.

If health care is being reformed, we have to look at who is doing the reforming. I am a health care provider in the home: Why am I not part of the planning process?

The answer here is pretty obvious. Women who are in the midst of caregiving have neither the time, nor the energy to take on this additional task. Once we are out of the situation, we haven't the energy or the interest.

Would a program put workers into her home so we can attend meetings? If not, how will our story be heard? How will we get programs that work for us?

Norma Buchan, a founder of the CWHN, now works at IM-PACT (Injuries Manitoba - Prevention of Adolescent and Childhood Trauma).

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