Caring for a difficult parent – Brooke Shields shares

Her name was Kathy, and she visited her father, faithfully and unfailingly three times each week.
Her father had advanced COPD, which meant he lived on oxygen, and frequently had difficulty with even the smallest chore. I’ve heard advanced COPD described as a feeling of drowning, as breathing becomes more and more difficult.

Kathy watched her father struggle more and more to breathe with each week that passed. One day she stopped by my office; I’ll never forget our conversation.

“My father was an alcoholic when I was growing up,” she began. “I never remember a time when he acted like he even cared about us kids, let alone wanted to help us succeed in life.

“He was often violent and brutal to us. I lived in fear of him until I finally got out of the house to go to college.”

Kathy told how she had distanced herself from her father and refused to let him become a part of her own children’s lives.

And then, somehow, the hospital had found her and contacted her when her father was admitted from home, no longer able to live alone and care for himself.

Kathy became the primary family caregiver. She helped her father move into our assisted living community, and she faithfully visited him three times each week. None of us knew about her history until that day when she finally shared it.

We cried together as she talked about her experience with an alcoholic dad, and the strange twist life took leaving her with the responsibility to now ensure his care.

I’ll never forget Kathy’s story, nor her brave efforts to build a relationship with a father with whom she’d never had a real relationship before.

Over the years, though, I learned that Kathy is not alone. Many, many adult children have become steadfast, loyal caregivers to parents who were never dedicated caregivers to them as children.

Brooke Shield’s story of caring for her mother who now has Alzheimer’s disease is just one high-profile example. Shields shares her painful decision to place her mother in an assisted living community after a reporter checked her mother out for lunch last week, causing Shields considerable anxiety and distress.

Shields had apparently planned to keep her mother’s move to the assisted living community private. It is personal, but here’s my message to Brooke and to the many other adult children of individuals with high care needs and strained relationships.

Do not be ashamed of finding a good care community for your loved one.

Be proud that you care enough to find good care for your loved one. Know that what you are doing – caring for a person who may not have cared best for you when you needed her most – is honorable and right.

I don’t know if I could have done what Kathy did, investing so much time and energy on a parent who made my childhood a living hell.

But Kathy’s caring – and Brooke Shields’ actions – give me faith that we can overcome our history and build relationships with our aged loved ones, and become better, stronger people as the result.

Caregiving for parents: the blessing path

Here’s a great article on Oprah.com titled “How to care for your parents and keep your sanity.” Just the title alone got my attention. If you’ve ever cared for a parent, you’ll know that keeping your sanity is an important part of the equation. You know the days and nights that blur together, the feeling of uncontrollable laughter – or is it crying – when someone mentions the word “stress.”

The article starts with a story about the Navajo people, who believe “that caring for the elderly is a ‘blessing path’ in which the whole community should participate.”

If you’ve been reading my articles you’ll know that this is something I believe strongly in. I believe that, as caregivers, we need to access all the support and resources we can so that we can care with joy. We need to tell our friends, relatives and neighbors that we’ll take them up on their vague offers to “let me know how I can help” – and ask them to help in concrete, supportive ways. We need to hire, whenever possible, trained professionals to do the tasks so that we can focus on the relationship - something we can never hire anyone to do in our stead.

Martha Beck, the Oprah.com article’s author, ends with this very visual description of this journey:

“Rather than a long day’s journey into night, you’ll feel yourself making a long night’s journey into day: through fear and confusion to courage and wisdom. Receive this gift, the final one your parents can offer before they take off their shoes, jump out the window and fly home.”

Caregiving is a gift. It can be one of those gifts you’re really reluctant to open (how do I say thank you – and look like I mean it – for another poorly crocheted sweater?); or it can be a gift that offers you a new way to measure the value of days and the significance of life.

Family frustrations: caregiver challenges within the family

My sister and I have never been really close. She’s three years younger than me, but very different in her preferences and lifestyle. She makes a living training horses, for example; I’m essentially afraid of all big animals.

It shouldn’t have surprised me, then, when my mom needed lots of assistance after an accident that my sister and I approached it from very different perspectives. My mom lives close to my home (my sister lives two states away), so naturally many of the day-to-day tasks fell to me and my family. Somehow that didn’t stop my sister from weighing in on a regular basis. The conversations often went like this:

Mom: “Sharon came by and took me to the doctor this morning.”

Sis: “I hope she didn’t just drop you off in the waiting room!”

Mom: “Well, I’m perfectly able to talk to the doctor without her in the room.”

Sis: “Still, she should have stayed with you through the whole visit. I don’t know what she was thinking!”

Of course, what I was thinking was that I have three kids at home, a business to run, a house, a husband and a dog. If my mom can manage any aspect of her care needs without my hands’-on help, I’m going to step aside and let her!

Most families, I’ve discovered, have similar sibling dynamics. One sibling (or sib-in-law) becomes the primary caregiver, responsible for the regular tasks like transportation, shopping, laundry and more. Other sibs, often living across the country (or maybe just a few miles away) are content to let the one sib do most of the work.

You’d think that the other family members would recognize the hard work of the caregiving sibling and be profoundly thankful – and you’d be wrong. Most often, siblings who don’t have the direct experience don’t really know what is involved, or how hard the caregiving sibling works.

It’s easy to second-guess someone whose shoes you haven’t walked in. It’s not easy being on the receiving end, though.

What can you do?

1. Take it easy. Recognize that only you know how much effort is involved for you to keep all your balls in the air. There’s no way anyone else can know exactly what your life is like, so don’t expect them to know. Try to breath, smile and say, “I’d like to see her give this a try!”

2. Pass the torch. This is especially important for those distance siblings who say, “What are you thinking – moving mom into an assisted living center?! She can’t be that much care!” Invite your mom to their house, and let them have a chance to see first hand exactly what mom does need.

3. Gather support. If you’ve got other siblings who can rally to your support, pull them in. In my case, my brother offered me constant support while my sister second-guessed every move I made – or at least it felt like it to me. So, every time I finished talking to my sister, I’d pick up the phone and call my brother. He would patiently reassure me that what I was doing was exactly right, and we could laugh together at my sister’s many comments.

4. Hold a family meeting. Every family should sit down together and talk about big decisions, preferably before those big decisions need to be made. Involve the parents, if possible, and talk about choices for care (at home with help? At an assisted living center? Sell the house? Rent to a grandchild?). Make sure you talk about money, too, as decisions come with price tags that often are surprising. For example, keeping mom at home, no matter what, is fine if mom can afford to pay for around-the-clock-care (expect to pay several thousands of dollars for 24-hour in-home care), but if money is restricted other options need to be carefully considered. If you can do this together you may be able to avoid some of the worst family conflicts.

5. Get company. You can take comfort from knowing that you’re not alone – in fact you’re more like most families than unlike them, if you have some sibling discord. You might want to join a support group of other family caregivers (check with your local hospital) to share your frustrations and get support. You’ll not only get an outlet for your own feelings, you’ll gain new friends and helpful tips for survival from others in similar situations.

My sister and I are closer these days, but we still see mom’s care from very different perspectives. Most days, I can smile and nod when I talk to her. Some days it’s not so easy. But like all family dynamics, it’s a work in progress.

The waiting list opportunity

My mother lives in a retirement village in the suburbs of Portland, Oregon. It’s a community composed of seniors living in single-level duplexes spread over a several-acre campus. There are wide open green spaces, room to garden in front and back of most units, and a central building they call the “Ad building” (like on a college campus) where a lovely library, dining hall and activity spaces are provided.

My mother and father had been on the waiting list for 2 years before my father’s death. It took us several months after that, and many nagging phone calls, to finally get my mother to the top of the list and into an available unit.

Today, the village is sitting with several vacancies.

It’s not alone, either. According to the Milwaukee, Wisconsin Journal Sentinel today’s “double whammy of a sluggish home market and depressed stock prices” have left many seniors unable to make the move. It has also opened up space in the Milwaukee Catholic Home, a place that typically had up to 40 people on a wait list.

For seniors and their families that can make the move, this offers a unique window of opportunity to select the retirement or assisted living community that fits perfectly – with no waiting list delay.

Some seniors are renting their homes to younger family members while they wait for the market to improve so they can sell.

Others are simply pricing their homes to sell, even in this economy.

If you’re ready to make the move, you not only may find that you have a great selection of communities to choose from, but you may also have some unique bargaining power. Some communities are waiving their entrance fees, or allowing the person to defer paying them until their home sells. Others are offering move-in incentives. Look for incentives that help you defray the cost of moving your furniture and paying the first months’ expenses, as an example.

My mom wasn’t sure she was ready to move into the retirement village after my father died, but she knew she couldn’t stay in their farm-home alone. She moved, somewhat reluctantly, but now she says, without a doubt, “It’s the best move I could have made.”

It was the right time, to the right place for her. Perhaps this economic time will offer your loved one the right time to move into the right place for the next phase of their life.