Wednesday, December 28, 2011

New Year. Now What?

So here we are at the end of 2011. Yes, it’s that time of year when we’re hit with those “best of the year” and “worst of the year” lists. I wouldn’t be surprised if you were doing your own year-end review, thinking about what happened and what didn’t happen, what you accomplished and what you didn’t accomplish.

And then, I will ask that question one more time, but change the emphasis. How do you THINK you did? I’m emphasizing the word “think” because that’s where you can get yourself in trouble when you’re doing your annual review.

Focus on the bigger picture. Life is an ongoing process of growing, developing, learning, caring and being cared for. An ebb and flow. Life may seem to go better – fewer challenges, more successes – some years, and not so great other years. But the point is that your life isn’t about only one year, but the years that you have lived, and the years that you have ahead of you. So don’t lose your perspective.

Give in to the possibility of change. And while you’re looking at the bigger picture, ask yourself: Is 2012 a year for new directions? The only thing we can really count on is that things change. You’ve already seen it in your own life, with the changes that your diagnosis introduced. The more flexible you can be – ready, willing, and able to shift your priorities, and change your routine – makes it easier to live with uncertainty. Open yourself up to the unexpected.


Make “taking better care of myself” the top priority for 2012. Think about what you need to do to strengthen your foundation. More attention to your physical well-being with an exercise plan? Learning how to cope better with stress? Picking up a new hobby? Spending more time with friends and family? Building a stronger support network? Assess your strengths, and where you need to add more muscle, and commit to doing what you need to do to get bulked up.

Celebrate 2011 by celebrating yourself! You’ve made it through another year. Life is good. And 2012 is a year of even more opportunity for personal growth.

Happy New Year! Make 2012 the best year yet… at least until 2013!

Friday, December 2, 2011

Your middle name isn't God.

Being a caregiver, and all the uncertainty around it, can leave you feeling out of control. Scary decisions to be made. Treatments with unfamiliar side effects. Emotions all over the place. And when humans feel out of control, they begin to fear what we all fear the most: helplessness. Some days you want to micromanage your loved one's life, other days you may want to run for the hills. But consider this: we are not in control of what happens in our lives. Life happens as it happens. Trying to have control over everything is trying to play God, and that's a lose-lose proposition. So, unless your middle name is God, can you give yourself a break? Take a look at what you can control and stop trying to control the uncontrollable. Take life one day at a time. THIS day. Not tomorrow. You don't control that either. Take a deep breath and relax. Live in the moment. Take care of yourself.

Sunday, November 27, 2011

Looking ahead

I met a wonderful couple over the weekend. These are two people who clearly love each other, who enjoy each other's company, who enjoy their life together. They have a beautiful home, wonderful family and friends. So joyful, so content. And then afterwards I was told that he has a serious illness -- very serious -- that will require extensive treatment that may, or may not, be effective. They know this. If the had told me what was happening in their lives, what could I have said? I guess I would have honored them for living in the moment, for enjoying that day, for being present with each other and with the people that they invited into their home. And I would have wanted to make myself available to them in any way possible, to be present with them. And I would have wanted to somehow make the reality of their lives go away, but I know I couldn't. I was aware of the power of being mindful, of living each day in the present, each moment as if it might be the last. But I was also aware of the feeling of helplessness.

Sunday, November 13, 2011

Are you happy?

Happy? That may be a word that you don't think about very often. Or if you do, it may only be long enough to reminisce about past happiness, or maybe to wonder if it is even possible to be happy at this point in your life.

The challenges of helping a loved one facing illness can feel especially hard to face during certain times of the year like upcoming holidays when so many of the people around us appear to be living it up, at least on the surface. But if you’re dealing with medication regimens, diet limitations, mobility challenges, symptoms, side effects… all the summer pressures to go-go-run-run can leave you feeling that you spent life sitting on the sidelines or, on the other hand, tried to keep up and chasing your own tail until you got tired of running.

Happy? What are you, crazy?

Here is an article on my Website that talks more about happiness. http://www.justgotdiagnosed.com/are-you-happy-yet-here-are-some-ideas-get-started

Real happiness starts with your own attitude and your expectations -- or not having expectations. Not judging yourself. Giving into the moment, and seeing what's possible, the joy in each moment. And that means that we all have an equal opportunity to find and grab onto happiness, regardless of the challenges we might be facing.

Saturday, October 29, 2011

Get lost!

Once in awhile, preferably on a regular basis, caregivers need to some stress relief. One of the best ways to deal with stress is to get lost. That is, to get lost inside of something that you enjoy doing.

Doing something you love can be like escaping into another world where the worries and the frustrations of caregiving can be put on the shelf, at least temporarily, while you lose track of time and space.

So, you might be asking, just how does one get lost? I would answer that question with a question: How do YOU get lost?

Think back to the last time you escaped into that other world. What were you doing? Enjoying a favorite craft, like knitting? Listening to music? Dancing? Reading a book? Playing with children? Doing some house or yardwork?

What’s happening during these moments of escape is that you essentially distract yourself from the pressures of the moment. You give yourself a “time out” and allow your mind and your emotions to rest. The focus is on you and you alone. Reading can help because it engages your mind and literally carries you into another world for awhile (caution: choose a book that is going to entertain or inspire you). Activities like crafts or housework keep your brain busy through soothing, repetitive movements. Playing with children or volunteering can give you a feeling of connectedness with something outside of yourself.

Any of these activities can give you a temporary refuge and be a way to heal you emotionally while you also reduce stress. And also keep in mind that, even while you are focused in another direction, your mind is working undercover. Have you ever had an inspiration while taking a shower or doing housework? When you distract yourself from your problems, take the pressure off yourself – and take your eye off the ball – you are also giving your brain a chance to work on its own. This can give your brain access to your strengths, and to the possibilities. Who knows, you might return to reality feeling renewed, refreshed, and with a new perspective.

You might be thinking that the obvious solution is TV, but it is not necessarily the best one. TV is pushed at you, no focus on your part is required. What should be helping you to relax by giving you a break from the pressures of life may be stimulating more thinking, more worrying, more frustration. And so much of TV isn’t exactly what I would call feeding your soul. Surfing the Internet also falls into this category.

How are you going to get lost? What takes you out of this world, relaxes you, centers you, gives you a feeling of accomplishment, gives you pleasure? If you aren’t sure, it might be time to do some exploring. Try something you have thought about you haven’t yet taken the step to pursue. Experiment. You will know that you have found it when you look at your watch and say, “wow, I didn’t realize this much time had gone by.”

Need a break from the stress? Get lost!!!

Saturday, October 1, 2011

Remind yourself that you are a work in progress.

Looking for another way to stress yourself out?

How about telling yourself what you should have done, said, felt, accomplished, been acknowledged for, etc. All those “shoulds” can turn into a big old club. And if you use that club to hit yourself over the head a few times, you can end up with stress, and probably a headache to go along with it.

Ready to put the club away but not sure how to do it?

You can start by making the decision to allow yourself to be human. That means not always being perfect. Making a few mistakes, a few misjudgments. Pushing too hard, or being a little lazy. Being flat-footed once in awhile and stepping on somebody’s toes.

That’s all part of being human. We learn from our miss-steps. We try to do better next time. Sometimes we succeed. Sometimes we have to keep practicing. Two steps forward, one or two steps back.

Lighten up. Shake your head at yourself and smile. Resolve to keep trying.

Remind yourself that you are work in progress. You may never “arrive,” whatever that means. But it’s all about doing the best you can on this journey of life.

Sunday, September 11, 2011

Sign up for my newsletter

I am now publishing a monthly newsletter. I you are interested in signing up, all you have to do is go to my home page at www.JustGotDiagnosed.com and sign up. The newsletter will include a feature article, a resource of the month, and information for caregivers.

Saturday, August 27, 2011

Blaming the victim

It’s hard not to feel helpless when the person you are caring for has bad days. You don't know what to do and so you feel scared, as any human being would. But as a result, you may unintentionally slip into to “blaming the victim.”

You may do this by getting mad at your loved one for not "doing something" to avoid the bad days, as if this was possible. Or you may want them to "fake it til you make it" and pretend they aren't feeling the way they are feeling. Or you want to micro-manage them by getting on top of their compliance with medications. Clearly, none of this is helpful to them and, instead, leaves them feeling unsupported at a time when they need your support.

I am creating a monthly online newsletter through my Website, www.JustGotDiagnosed.com. If you interested in receiving it, please sign up by using the sign-in box on the home page of my Website.

Have you sat down to talk with them about how they feel? Have they had a chance to educate you on what you can do to help them — even if it means backing off — when they are having a bad day? You may have tried this already, but it might help to sit down and get some education.

And while you are at it, this might be a good time to let the person you care for know how they can better help you to help them. Making an agreement to be honest with each other is a great start.

Give your loved one permission to say: “don't worry, I will get through this, and I you will be the first person I will come to if I need help." This might be a good start.

Saturday, August 13, 2011

Off to the beach.

Need to run away to gather your thoughts, calm your jangled nerves, and get back to your center? Sounds like time for a little break. No, you don’t have to take the nearest flight to Miami. No need to do all that traveling or wait that long. You can do it right now.

Take a short break from the action. Five minutes if that’s all you have. Find a quieter place where you can be alone. Even the bathroom will do.

Sit in a comfortable position. Take a few slow, deep breaths to begin to calm yourself down. Close your eyes. And then visualize a calm place where you feel relaxed, safe, and at peace with yourself and the world. Like the beach. Or if you are not a beach person, some other place where you feel this way, or your back yard, a park after it’s been snowing, or your grandmother’s kitchen.

Imagine that you have been dropped into this calm place to take a break. What are the smells? The physical sensations? Any happy memories?

Visualize yourself enjoying your surroundings, relaxed, peaceful, renewed. And compassion fatigue avoided for another day.

When you are back to your center, you’re also ready to head back into the action, that much better prepared to maintain your cool.




Sunday, July 17, 2011

Hospitals and helplessness.

After suffering too long with a hand infection, I finally reported to an emergency room last week, and was immediately admitted to the hospital. I was quickly reminded of something that I tell my clients: being in a hospital is like entering into another culture, with different clothing, rules, language. You ae the patient and you are the outsider. It has been a long time since I felt this helpless. You wait, you worry, you put up with a lot of discomfort. Things happen on someone else's schedule. You have minimal choice about what you eat, if any. The days pass slowly, at night you find yourself awakened virtually every hour. What was especially interesting to me was observing the caregivers. They often looked like walking wounded, worried expressions, clearly exhausted. I had various roommates while I was there. Family members came to visit, sat while their loved one complained, or cried. They gently asked nurses to give their loved one a little extra assistance, clearly afraid to rock the boat by appearing to be too demanding. And patients told their caregivers to go home and get some rest, feeling their own guilt. The caregiver's burden. I see it my clients, and I saw it my own mirror when I was taking care of my mom. As I was going for my occassional strolls, hand in hand with my IV rack, I saw caregivers standing in the hallways, taking a breather, making a quick phone call to give a status report, or to reconnect with their own lives for a minute or two. I smiled at them, and sometimes received a sad smile in return. Life on life's terms.

Wednesday, June 22, 2011

Sweating the small stuff

It always really annoys me when I hear the phrase, "don't sweat the small stuff." First, I don't like cliches. Second, and more important, it usually being said by someone who doesn't understand what the person they are saying it to is going through. Caregivers, for example. Caregiving is all about sweating the small stuff, being there to manage the little details that contribute to quality of life for the person you are taking care of. Making sure a favorite snack is available. Giving them a call in the middle of the day. Double and triple checking on a doctor's appointment. Help them get dressed but honoring by not doing it for them even when it takes three times as long to do it that way. The small stuff that caregivers sweat.

Thursday, May 26, 2011

Frustration

These days, daily life gives us any number of reasons for our frustration button to be pushed hard. You name it, the weather, the economy, our jobs, family… and facing the day-to-day challenges of caregiving.

It is only human to feel frustrated when life seems to be throwing one curveball after another, to ask questions like “what is this happening to me?” Lingering frustration can be a “gift” that keeps on giving. It can bring up a lot of strong feelings that may be hard to sort out. It can make you wonder if there is anything you can do to fix things, and if you should even bother to try. Frustration can leave you with a pretty bleak view of your future.

Show yourself some compassion… and patience. Go easy on yourself, tell yourself that you are facing a lot and that you are doing the best you can under the circumstances, and that you will find a way to face his challenge, as you have faced others in the past. Turn your compassion outward. If you can stop being hard on yourself you will also be less likely to be hard on others.

Wednesday, May 11, 2011

accepting the 95%

A good friend is dealing with a health concern, and is going in for testing today. When I was telling her how concerned I am for her, she mad the comment that 95% of life is out of our control. I was thinking about how the experience of being a caregiver brought that realization home for me. We have no idea. Life is not just, it just is. People get sick, they need help, they inconvenience us, we love them, we deal with reality. One of the first things we give up us our need to control. But when we do, it makes it a lot easier to give up whatever else we have to give up. Life on life's terms, not our terms.

Wednesday, May 4, 2011

Getting through the day

This is one of those days where the best way to get through it is just to get through it. To put one foot before the other, viewing the day as practice, doing what you have decided to do because you decided to do it. Not expecting a pat on the back or a thank you. Accepting life on life's terms. This is how we validate ourselves. This is how caregivers keep caring.

Thursday, April 21, 2011

Burnout

Burnout, and compassion fatigue, at various degrees, is a common experience for caregivers. Caregivers think that they should not be feeling this way, and so they hold these feelings in. They may be afraid that if they slow down or try to delegate, their loved one won't get the care that they need. They fear that they will somehow drop the ball, and then feel guilty if "something bad happens." Doctors often tell me that they worry as much, or more, about the caregivers of Alzheimer's patients as they do the patients.

Let yourself feel the fatigue and frustration of caregiving. Talk to an objective third party, vent if you need to. Get some breaks here and there, a day or two off. Take care of yourself.

Sunday, April 3, 2011

Wake up.

Caregiving is a spiritual experience in so many ways. It forces us to look at our basic beliefs about life, to face the reality of decline and death that up until this moment had been abstract. For many of us, this can be a time of spiritual awakening.

The disappointments and sorrows of life make the present moment that much more precious!

Friday, March 11, 2011

HALT

HALT!

Hungry? Angry? Lonely? Tired?

If you have ever been involved in a 12-step group, you are most likely already familiar this acronym. Basically, it refers to an emotional state that can be the breeding ground for a relapse.

But I think it has special meaning for caregivers. I don't think I have every met a caregiver who doesn't find themselves missing meals or not eating well, feeling angry about something that has happened to them or their loved one, not getting enough emotional support and companionship, or just plain dog tired. Or some combination. Or all four.

It's hard to be there for someone else when you aren't being there for yourslf. Be mindful of how your feeling, and how one of the four HALT siblings can sneak into your life. When you observe this in yourself, do an intervention to take care of yourself and send that one packing.

HALT!

Saturday, February 19, 2011

Friends stick around

Are your friends sticking around while you are distracted by caregiving responsibilities?

Human beings are constantly changing, what they need from other people changes, what they can give changes, nothing stays the same forever. We grow at our own pace, and in different ways from the people in our life.

Sometimes we are ready to relate to people differently, we expect more from them, we wanted to be treated in a different way that reflects whom we have become or want to become. Some of the people in our lives can change the way they relate to us, to move in a more positive direction with us, and others can't or won't because they have too much invest in treating us the old way. Whether it is good for them or good for us. And so the relationship has to end.

It's a sad part of life. But on the other hand, as painful as change can be, it's how we grow. Real friends stay the course with us, even if it's not always smooth.

Saturday, February 5, 2011

Getting the Conversation Started

One of the issues that we often talk about is support. Some tell me that their family members are constantly attempting to do things for them, to the point that they are made to feel that they can't do anything for themselves. Others tell me that their families aren't helpful at all.

What I learned is that communication is the common thread that runs through all of these conversations. When one family member is facing mobility issues, others in the household often feel helpless. They are worried about the indiviudal whose mobility is imparied, and so they try to jump in and do everything. In a way, they are trying to make themselves feel better by doing taking control, or at least trying. On the other hand, feelings of helplessness can cause family members to essentially 'run away' out of fear that they might do the wrong thing. They make themxelves feel better by avoiding what they think could be an uncomfortable situation.

The best cure for feelings of helplessness is communication. Have you ever sat down with your loved ones and talked about how you feel, physically and emotionally, and letting them know how they can help? Have you ever asked them about what's going with them in regard to your situation? This might lead to a discussion of how they can help, and what you don't need them to help you with. And it might mean a whole lot less tiptoeing around at your house.

Some of the most rewarding experiences I have had include sitting down with patients and family members and helping them to talk about how they can work better together. If you are having trouble initiating this conversation, you might call upon a healthcare or mental health professional to act as mediator.

Wednesday, January 19, 2011

Overwhelmed? Time to make a bucket list? (Not THAT one.)

Sometimes it can feel like life throws a lot of curveballs at once, and they come at us so fast that we feel like we don't know which one to try and catch, or if we should even bother to try. Or if we should try to juggle all of them until we fall down exhausted.

Caregivers have a special relationship with curveballs.

Here's a way to look at what's going on in your life in a way that might help to reduce your anxiety.

Managing your your responsibilities as a caregiver is one challenge. Others might include a bill that has to get paid, a relationship problem, your boss’s bad moods, your child’s last report card, that leaky sink…

Put each challenge in its own bucket.

Then, go from one bucket to the next, one at a time rather than all at once. As you examine what's in each bucket, ask yourself: What do I have control over here and what do I not have control over? Is there anything about this problem that needs my attention? What do I have to do? What do I have to accept?

As you examine what’s in each bucket, decide:

What you can and can’t do about the problem.

What your action plan is (don't forget to focus on what you can actually control here).

How important it is to solve this problem, compared to the other challenges you are facing right now.

And ask yourself: Is this something that I need to learn to sit with, as I am learning to sit with life as life is, and not as I wish it would be?

Line the buckets up, with the most important bucket first in line, followed by the others, in order of importance. In other words, ask yourself which bucket you want to dive into first. Hint: it’s important to care for the caregiver, so I would put that self-care bucket first in line, and keep it there! What does it mean for you to take care of yourself?

Take action – realistic action – and then move on to the next bucket.

This isn't magic. Your challenges aren't going to magically go away. But you can at least see where you are making headway and where you aren't, and you can see what you need to do. And maybe you can even see where you need to relax.

The point is to look at your life challenges in a way that provides you with the opportunity to see where they can, individually, be managed. It's when we see only this big mass of trouble that we feel overwhelmed.

Part of coping with life is realizing what we can change and what we can't change, and then deciding how best to go with the flow.

I would also encourage you to reach out for support. Friends, family members, who can listen objectively when you need to talk. You might also consider reaching out to a mental health professional to help you to maintain your perspective as you deal with these challenges.

Saturday, January 1, 2011

Anticipating a happy 2011

Yes, in spite of the title of my post, I write that without sarcasm. So you might be asking, how can I have a happy new year when I'm feeling anything but happy?

It is a human to be continuously hoping for more in life, to wish that things were different than what we actually experience, to not understand why our best efforts don't always seem to pay off, to be amazed that other people behave as they do. Feeling disappointed at the unfairness of life. The world just doesn't work the way that we think it should.

For better or worse, it's normal to feel this way. Someone in my house feels this way at times. Since I live alone, it must be me. Yep, it's me.
What I have learned to do in my own life, and try to help my clients to do, is to "sit" with disappointment. That doesn't mean welcoming disappointment, and it doesn't mean wallowing in it.

Sitting is really about accepting. When we sit with our disappointment, we accept that life isn't always what we wish it would be or think it should be (even if, darn it all, we are absolutely right!). It means living life on life's terms. Acknowledging that things aren't as we would have them to be, picking ourselves up, dusting ourselves off, moving on.

Hoping — and striving — for something better is what keeps us moving forward in our lives.

I know this isn't easy for you to do. It's not easy for me, either. And I know that if you are experiencing clinical depression, living with disappointment, picking yourself up and moving forward, takes additional help in the form of medication and therapy. I remind my clients that asking for help from the mental health profession is a sign of strength, and resilience, that will to live that is inherent in all human beings, and not weakness.

We are all surrounded by lots of evidence as to why we feel disappointed. No disputing that. But I would also encourage you to look for the evidence that there is also a lot of good in the world, and the people who live in it. We're all in this together.

As humans, not having our expectations met, as reasonable as they are, is part of the deal. Accepting that our expectations won't always be met and, sometimes, never seem to be met, can help you to give up the internal battle: The battle of you against the world and the world against you. I would encourage you to relax the need to always be in control and, instead, to go with the flow.

Life is what it is. Let's work with what is.

What we do have control over is our ability to choose — to choose to see the possibilities, to choose to reach out for professional help, to choose to bring supportive people into our lives, to choose to make the absolute best out of our own lives and the lives of the people we care about.

So I will say it again. Happy New Year! I am thrilled to be friends with so many fellow travelers on the road of life. By being strong for each other, we also become stronger as individuals.