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Publication Date: Friday, November 09, 2001

Giving thanks for caregivers Giving thanks for caregivers (November 09, 2001)

By Diana Reynolds Roome

Many people who become caregivers are thrust into the position without warning and, they may feel, without the necessary qualifications. Certainly, few dream of applying for the job of unpaid caregiver.

Yet every day, daughters, sons, spouses, parents and partners become involuntarily enlistees, taking up the job of caregiver with no training and few resources.

Disabling events, such as accidents, heart attacks and strokes, are devastating for those who suffer them. The lives of those close to them can also change in a flash. A child born with problems that block the usual milestones of growing up can lock parents into a life they never imagined.

In cases of blindness, motor and nerve function disorders, or dementia in older people, dependence may come gradually. Whatever the cause, becoming a caregiver is a radical change for which few are prepared.

After the practical adjustments have been made - physician appointments, financial assessments, fitting of practical aids, schedule alterations - a new kind of work has to be undertaken. This can be hardest of all, because it involves the mind and soul.

"A healthcare crisis brings up a myriad of emotions," says Paula O'Sullivan, PhD, a Mountain View-based clinical psychologist who teaches, writes, and runs support groups for the Peninsula Stroke Association.

"For the person who has suffered the setback, there's sadness, loss and anger - even a deep rage for what has happened. Caregivers go through this, too. They have also had to give up their freedom and vision for their own future. But because the loss is less tangible, they may feel guilty about their own feelings."

The holiday season can be especially hard for those with caregiving responsibilities

When life has narrowed to a physically exhausting routine with little time for personal satisfactions, it may be a challenge to find things to be thankful for at Thanksgiving, or cheerful for during the "season of good cheer."

Linda Miles, a psychiatric nurse who lives in Mountain View and works at the VA Hospital in Menlo Park, spends most holidays with her father at his private residential care facility. He suffered a stroke three years ago, and has since lost the sight in his right eye and developed dementia.

"My father doesn't really know it's the holiday," says Miles. "He thought a recent Halloween party meant it was Thanksgiving." Her responsibilities are doubled because her brother is mentally retarded, so she needs to take him on regular outings, to visit their father, and make sure he is also well taken care of.

"I'm totally worn out," says Miles, who regards her demanding psychiatric work as a diversion. "I do feel sadness and anger sometimes, but mainly a sense of loss because my father has changed. The person I used to have is gone." But despite that, Miles is grateful that her father is looked after on a daily basis, even though she has to supervise his care closely.

Finding acceptance is a struggle for many people, says O'Sullivan: "Sometimes you have to dig really deep to find a silver lining but believe me, it is there."

For Suzanne Bellamy, an independent communications consultant who lives and works in Mountain View, the reward is the knowledge that she and her sister have between them managed to keep their mother living with them in their homes. Even part-time caregiving is demanding, especially since their mother, who turned 90 this year, broke her hip and also started to lose her sight several years ago.

"I've benefited because it really allows me to see what it's like to age," says Bellamy. "It's given me an understanding of what it takes to grow old, both financially and emotionally. My mother makes a point of being upbeat - she's such a positive person."

O'Sullivan believes this attitude is key to coping, both with giving and receiving care. "You have choices about how you think and feel," says O'Sullivan. "Life is up for interpretation."

Caregivers sometimes see their charges' annoying habits as calculated to make them mad, she says. But it's important to remember that the loved one is dealing with his own agenda, so it's up to the caregiver to decide whether to get mad or find peace and even humor in the situation.

"People who laugh have lower blood pressure and better immune function. They're less depressed and less angry. If you can make that cognitive switch that sees the humor in the hardship, it can be very de-stressing."

It's a good idea to ask friends to send you jokes on the internet, find humor in magazines, watch sitcoms, and try to see the absurdity in situations that could otherwise become too intense.

Keeping a gratitude journal can also help key both parties in to the kind of thinking that appreciates blessings, notices flowers, children, and small gestures of kindness.

"Gratitude is a path down the road of happiness - of renewal, acceptance, living and loving," says O'Sullivan. "But many caregivers don't get much, and they don't know how to ask for it.

Frustration can often spill out on to the loved one more than anyone else. But if the person being cared for can say thank you, this is probably the greatest gift of all."

O'Sullivan suggests being brazen and asking for appreciation, if needs be: "You have the right to be thanked, treated well, given a moment's peace."

Boundaries can be distorted by chronic illness. Whatever the disability, it's healthy to encourage the sufferer to do as much as possible for him or her self, and to understand the caregiver's need for some time off. Respite care is often expensive, and seeing a movie can end up costing $50 if it means paying somebody to sit in. But even simple breaks, such as going for a walk, taking a long, hot bath, or making a phone connection with a friend can be restorative.

Dale Saso, who builds custom bicycles for local cyclists, believes it's important for caregivers to begin looking after themselves early, before they start into what he calls a "downward spiral."

For a year and a half, he was the primary caregiver for his father after he suffered a stroke. "I had no day off for a year and a half, and never had a full night's sleep. Exhaustion reached a point where I was ready to call emergency on my own behalf."

"Nobody knows how much and how hard caregivers work," says O'Sullivan "What they do is huge - a gift they give out of love, devotion, every day, sometimes when they don't want to. The holidays are a time when they should give themselves a gift."

Paula O'Sullivan's tips for Getting the Best out of the Holidays: 1) Be realistic. Holidays are stressful for everyone and we've grown up with many images of what they're supposed to be - the happy family around a brightly decorated table. Few of us has picture-perfect Hallmark holidays. Choose one or two things you would like to accomplish and concentrate on them. 2) Scale down. For caregivers, trying to keep up the old traditions may just be too much. It's fine to compromise - order a cooked dinner from a grocery store, and give yourself a break. Better still, ask another family member to cook, and maybe contribute a fancy dessert or an attractive table. 3) Get organized. Plan ahead, make lists, and try to foresee or forestall small problems that might arise. 4) Seek out other people. Caregivers can suffer from tremendous isolation. Friends drift away or are too embarrassed to visit, so let them know you want to see them. With support groups, caregivers feel less alone. With friends, they can regain their own lives and sense of normalcy. 5) Reminisce about past holidays. People are sometimes afraid that they or their loved one may become tearful. But on the other side of tears is laughter. Photos and videos are powerful ways of reliving rich and wonderful times in the past. 6) It's okay not to celebrate. A holiday mood is not mandatory. Some people want to shut the curtains, turn off the TV and wait until the holidays are over. If possible, give yourself the gift of doing something you really enjoy: a hike in the hills, watching a funny movie, or just getting an extra hour's sleep.
For more information and resources on caregiving: Paula O'Sullivan: 650-969-6986 Peninsula Stroke Association: 650-565-8485 Avenidas Senior Care: 650-326-2569 Family Caregiving Alliance: 415-434-3388;


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