Wednesday, 26 April 2017

Care Partner Wednesday--What is Normal?

"I don't feel normal. I don't feel like me."

As we talked, I asked her what she felt "normal" was. She told me about a time when she could do everything for herself, and used to run church groups. I asked my friend how long ago that had been, and we agreed it was about 15 years ago. "You've changed a lot since then, but not all of it's bad." She had new friends and had the joy of seeing her grandsons grow and start lives of their own. Many of the worries she had then, weren't an issue now. She'd learned and grown.

She had a new normal.

The "n" in care partner is for normal.

What is normal? In 1998, Patsy Clairmont first told us Normal is Just a Setting on Your Dryer. What a relief it was to learn that it's okay to not fit into society's little box. It was freeing at the time, yet we still seek "normal" in our lives.

Normal changes. When my kids were babies, normal was to be up half the night and and sleep-deprived during the day. When they were teenagers, normal was worrying when they weren't home.
Although those were special times, no part of me wants that "normal" back. I've changed, and I wouldn't have the energy for babies or teenagers any more.

If you are elderly, especially if you are in frail health, your normal can change in a flash and the change tilts your world. Maybe it will return to to "normal" or maybe a new normal will emerge. Sometimes you barely have a chance to figure out the new normal before it's changed again.

One of my residents was finishing her lunch. She got up, and as she reached for her walker, she turned and lost her balance. The fall that resulted tilted her world. A broken hip, and arm, surgery, rehab and months of recovery. Thankfully, her world has adjusted to it's pre-fall state, but the tilt was dramatic and harrowing for her.

As a care partner, finding normal can be a never-ending quest.
Here's my five suggestions when looking for normal.

1) Be flexible. Realise that life changes, people change and things will never be exactly as they have been. And that's okay. Look for the fun and the joy in what today brings. As a care partner, you can quietly grieve some of the losses, but determine to look for and celebrate the joy that today brings. If you are honest, there were times when the old "normal" wasn't that great.

2) Find some normal. In the midst of change, look for some memories or familiar objects that bring a sense of comfort. A picture, a favourite chair, a painting, a photo album full of precious memories. An activity you used to like to do together that is still possible. A little normal can make a whole lot of change easier to deal with.

3) Expect change. I have seen care partners and family members stress over change and try desperately to make things the way they were, when their loved one has changed and doesn't care about that any more. "She always loved to do crafts. Make sure to involve her when you are doing crafts." The person did love crafts in a different season of their lives. Now they would rather sit and look out the window or feel the fresh breezes in the garden. Everyone has interests that change as they get older.

4) When you "get it," help your family members. There's always one in a family, and often more, who lag behind in wishing Mom would be like she used to be, or worse, feeling that Mom is gone because she isn't "normal." Help them to see the beauty in the person who is there now.

5) Express to your loved one how you are enjoying who they are today. Even with cognitive impairment, elders know they aren't who they used to be. Your job is to recognise that and celebrate who they are today. Look for their wisdom and learn from them. Listen to their stories, even if you have heard them before.

Every day is a gift and normal is highly over-rated.

Wednesday, 19 April 2017

Care Partner Wednesday--It's All About Time

Have you ever run into an old friend you haven’t seen for a long time? After the obligatory, “Hi, how are you?” the answer is inevitably, “Busy.”

We wear “busy” like a badge of honour. Our time is full, and somehow that makes us better, more important people.

For care partners, balancing life is especially challenging. The T in care partner is for time.

Full time care partners have the biggest challenge. For them, the demands can be unrelenting, as day runs into night. Unending tasks, lack of sleep, appointments and repetitive conversations fill the days and stretch incessantly. They wonder, “Can I stay the course?”

To the full time care partner, I say get help. Everyone and no one is a hero in this situation. You are a hero for being there when you want to run away, or when all you really want is a full night’s sleep. Don’t fall into the trap of thinking that you are the only one who can provide care, or that you are somehow less caring or giving when you take advantage of the many supports that are out there. Government programs, respite care, friends, family—there is help available, and you need to use as much as you can. You will be no help to your loved one if you get sick or burn out.

Care partners who have an elder living in care, also struggle. Sometimes, it’s trying to make the right care decisions when the answer isn’t obvious. Sometimes, it’s trying to balance home, family, work and time with their elder. Guilt raises its ugly head and it’s difficult to make wise decisions with all the pulls on your time. “When are you coming to visit? I thought you were coming today.” A friendly conversation becomes a burden of guilt and even anger.

To this care partner, I say set boundaries. A frank discussion, sometimes held over several weeks and months, assures your elder of your love, and lays out clearly what you can and can’t do. “I can come one night a week to have dinner with you, I can take you to appointments, I can bring the grandchildren to spend time with you. I can’t be here every night, or even talk to you every day on the phone.” Time together needs to be enriching for both of you, not burdened by misplaced obligation.

All care partners need to remember this: time is finite.

This week, I saw two special care partners say good-bye to their elders. No matter what the age, the experience is wrenching, and terribly final. In the midst of whatever challenges you are having, remember this: someday it will end. Someday, you will have to say good-bye, and your time with your loved one will be over.

Time. A precious commodity.


Wednesday, 12 April 2017

Care Partner Wednesday--Walking the Tightrope of Changing Roles

Beth stood in the aisle at the drug store, looking at rows and rows of adult diapers. What kind to get? Who knew there were so many varieties? she said to no one in particular. Immediately, she was transported back 30 years, listening to her husband describe the identical experience.  He had just returned from the store carrying three different packages of infant diapers and wearing a baffled expression.I didn’t know what kind to get. I had no idea there were so many varieties. Here she was, all these years later, trying to figure out which kind to buy for her dad.

The second R in care partner is for roles, because yours are changing.

And staying the same.

At the same time.

Chances are, you have a specific role with your loved one. You are the sister, the daughter, the friend, the son, the husband or the wife. You are comfortable in this role, and although you may seldom think about it, your role has evolved over the years. Being the son isn't the same as it was when you were five, or even when you were twenty-five. You aren't the same person as a wife as you were on your first anniversary. Without noticing it, people grow and change constantly and our roles evolve with us.

Your role as care partner may have been sudden. An event such as a stroke, a hospitalization or any other kind of sudden decline thrusts you into the position of having responsibility for another person and making difficult decisions about their care and their future.

Even if the changes happened slowly, there was probably a day when it struck you. Like the frog in the pot of slowly heating water, we can deal with multiple changes until it suddenly strikes us that change has occurred and it's permanent.

I remember the day I came home from work early because of a call from a visiting nurse. My husband and I had been through nine months of changes and hospitalizations. His health was steadily declining. Because he made most of the decisions about his care, got himself to appointments and looked after his own medications, I didn't consider myself a caregiver. I was a supportive wife. When I descended the stairs to the basement and saw him sitting in his recliner chair with pills scattered all over the carpet around him, I knew in that moment my role had changed. I was still a supportive wife, but I also needed to care for him and make decisions. My heart dropped and I was afraid.

There is no magic formula for finding a comfortable place in your new dual role. As is often the case, every person and situation is different, and you need to find your own way. Here are a few suggestions that might help.

1) You are going to experience a myriad of emotions. Fear, anger, frustration and especially grief may overwhelm you. You may feel immeasurably sad as you realize life will never be the same again. This is normal. Find someone to talk to. A counsellor with experience in this kind of situation would be ideal, but a pastor or trusted friend could help, too.

2) Find ways to connect which are outside of your care partner role. Don't allow everything to become about the disease. One daughter plays cribbage with her mother as they always used to. A wife has dinner in the dining room with her husband every evening. A family brings in Mom's favourite food and eats together on Mother's Day. A granddaughter brings her baby in to charm Grandma. Look for connections that are both normal and fun.

3) Isolation is often a problem. Choose a few trusted friends and explain to them the changes in your lives and how you are dealing with them. Then consider inviting one or two over to visit. If a meal is too much, have coffee together, but include your loved one. Don't allow your world to shrink any more than is necessary.

4) Take care of yourself. (Don't I always say this?) The energy involved in figuring out your role and living it out can take a toll. Make sure you are nourishing yourself, both with rest and with stimulation, outside of your role as care partner. You will be able to carry on.

5) Write things down. It always helps me to keep lists. What works and what doesn't, ideas to try and connections with others to make. Lists are helpful to keep you focused in this scattered journey.

One of the difficulties of taking on the role of care partner to someone you love, is that you no sooner get it figured out and it changes again. Your original role (wife, son, sister etc.) is the same, but it will manifest differently as your new role of care partner evolves. Both roles are important, and feed into each other.

You'll know you are making progress when you can celebrate both.


Wednesday, 5 April 2017

Care Partner Wednesday--What If We Got Aging All Wrong?

Dr. Bill Thomas, founder of The Eden Alternative, poses an interesting question.

What if almost everything we believe about aging is wrong?

You’ve seen it before. A magazine article about a man who still runs marathons in his 90s. A woman who graduates from university in her 80s. Someone who is still working as a nurse late in life. I live in a community where the mayor ran and won every election until she retired at 93. These are the elders we revere as shining examples. We shake our heads in wonder. They are amazing. How do they do it?

As much as these elders deserve our respect, Dr. Thomas makes an interesting point.

“Older people have standing in American (or Canadian) society only to the extent that they can do the things that young people do. And what happens to them if they somehow can’t still do what young people do? They disappear. Or more accurately, they are disappeared.” (brackets mine)

Today, we are looking at the second A in care partner. Aging—do we have it all wrong?

From the day I began working in this industry, I’ve heard phrases similar to “Aging isn’t for sissies.” The implication is that when you become a part of this exclusive club, you’d better be ready for a painful journey, where all the joy of life is gone and each day is worse than the one before. The phrase was usually said to me with a wry smile and a squaring of the shoulders that implied the speaker wasn’t a sissy, and was somehow struggling triumphantly through this difficult time in their lives.

So I ask with Dr. Thomas, do we have it all wrong?

Reflecting on my life, I can think of many seasons that were not for sissies. Frightening, difficult times when I wondered how I could make it until tomorrow. I can also recall times of joy and laughter, and I have incredible memories of triumphs and exciting experiences. That’s life. At no time do we sail forth on a crystal sea—at least, not for long.

Dr. Thomas talks about the seasons of life, and suggests there is a fourth. We know childhood, adolescence and adulthood. He maintains the fourth season is elderhood. We need to grow out of adulthood into elderhood as we grow out of adolescence into adulthood. He says that when someone isn’t able to leave childhood and grow into adulthood, we say they are developmentally delayed. Yet as a society, we figuratively dig in our heals and resist in every way, growing into elderhood.

“We’re told that aging is the problem. Aging isn’t the problem. It’s our obsession with youth—our excessive devotion to the virtues of youthful adulthood.”

I’m not willing to throw away my makeup or hair colour, but I hear what he’s saying. I cringe almost daily at the ageist jokes on Facebook, poking fun at ourselves as we age. For at least a generation, we’ve been barraged with the message that all the good things in life occur for the young, and we need to cling to youth with every ounce of strength we have.

Dr. Thomas says, “There is life beyond adulthood. It’s called elderhood. Every day, we wake up one day older. Aging is good. We are all elders in the making. Our society needs elders.”

This is radical thinking. That time of life that we have dreaded and resisted with every fibre of our being is good? Those people we have hidden away in nursing homes, who we care for, are needed? We need them?

It all comes down to purpose, a subject I explored a few weeks ago. We need to send these messages to our elders daily—verbally and through our actions:
“You are important.”
“You have something to give.”
“My relationship with you enriches me.”

Actually, is there any one among us who wouldn’t blossom, hearing that kind of message?

All quotes are from Elderhood Rising by Dr. Bill Thomas

Care Partner Wednesday--What If We Got Aging All Wrong? Partner Wednesday--What If We Got Aging All Wrong?