Living Life To The Fullest

What Alzheimer's / Dementia Taught Me

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By Robin Carlen

I had to think carefully about whether I should write this article because, in doing so, I would be exposing some very personal things about my life. After months of debating, I decided to embrace Brene Brown’s advice about vulnerability and take the plunge. I’m a big believer in people sharing their stories so others can learn how they handled difficult situations instead of feeling so alone. During my mother’s illness, I read whatever I could find to help me cope with what was happening to her and to me, as her caregiver (for three years at night during the week, plus helping out at times during the weekdays, and full time every other weekend). I am so grateful to those people who wrote about their own experiences because they helped me to get through a very tough time in my life. Being a caregiver was the most difficult job I’ve ever done, but it brought me some gifts that I’ll always be grateful for. The experience of caring for a loved one changed me and reinforced (or completely altered) how I view my work and my life. Here are some of the things I learned:

 1.      Pursue Work You Love And Don’t Settle For Less

Gone are the days where I’ll stay (for months or years) with a consulting job, company, or boss because the situation provides “security”. I truly believe that holding onto a job or a company because we think it’s secure, provides us with no guarantees. The only security is making an effort to stay on top of the skills and experience we need to be competitive in the marketplace while doing work we value and (hopefully) love. Steve Jobs had this to say on the subject: “Your work is going to fill a large part of your life, and the only way to be truly satisfied is to do what you believe is great work. And the only way to do great work is to love what you do.” Does this mean your situation has to be perfect? Of course not, but I believe it means that the things you enjoy doing in your job or business need to outweigh the things you dislike. If that’s not the case, it’s time to look for a new opportunity. Forging another path takes courage and involves risk, but you will gain nothing by staying in a situation that no longer serves you.

2.      Work Only With, And For, People And Companies You Respect

When dealing with a parent (or other family member or friend) who is seriously ill, your relationships with those closest to you will change, hopefully for the better, but at other times, they will be different or may even end. This has been one of the most painful things I’ve had to face. When you’re in a major valley in your life, some people will be there for you and others won’t. Some will treat you with respect and others won’t. You are the only one who can decide what you will accept and where to draw the line. I’ve set a new, higher bar for my relationships in my personal life and at work. If a company I’m associated with isn’t respecting me, my feedback about issues, or my efforts to affect change, that can no longer be ignored. Does this mean everything always has to go my way? Definitely not, but if I’ve tried to bring issues to the forefront that are important to me, and it seems no one is listening, it’s time to evaluate whether it’s worth staying or time for a change.

3.      If You Want To Try Something New, Start Pursuing It Now

Would you like to start a business, pursue another job, or go back to school? When your mind wanders, and you see yourself in a different situation or living a different life, I believe it’s because your true desires are coming to the surface. They are hard to push down and forget about. When I think about my mother, the reality that life isn’t fair, and time is precious, often comes to mind. There are so many amazing opportunities available to us if we will only take advantage of them. To start living a life you will find more rewarding, you don’t have to make sudden or extreme changes; instead, take baby steps. Start writing a business plan, looking for another job (with such a great job market, now’s the time), or exploring educational programs. Do something now, not tomorrow. You will never have enough time. You have to make the time.

4.      Speak Your Truth And Take More (Calculated) Risks

This is much easier said than done, but when I realized how precious life and my time is, I came to the conclusion that I really have nothing to lose, and everything to gain, by speaking my truth and taking calculated risks. For me, there is no longer any alternative to this way of life. I want to live with authenticity, and sometimes that means speaking up or going out on a limb about things that are important to me. Doing so is a risk because people aren’t always going to like what I have to say. While caring for my mother, I had to put most of my business efforts on hold. I recently made the decision to continue coaching and training, which I love, but I will be expanding my business to include additional services (stay tuned and check my website in the coming months for more information). This is a bit scary for me, but when I start feeling like I might be better off playing it safe, I say to myself, “So what if things don’t go as planned?” and remember that failure is just the realization that something isn’t working. I can always forge a new path in a different direction, and so can you.

5.     The Tough Times Will Get Better, So Hold On

I tell you this because, at times, I thought the tough times were never going to change. When you have days where you wonder what’s happened to your life, why the person you love had to go through such an experience, and your dreams of ever living a “normal” life again seem in the far, far distance, hold on, because things will get better. Fortunately, in most areas of your life, you hold the key to making any changes that need to happen. If you can, do something small every day to work towards what you really want. I read someplace that keeping a gratitude journal can be very helpful in changing your mindset and in manifesting more positive things in your life. Once I started that practice, I not only felt better, but I noticed some good things were starting to happen. If you can, find a support group to join, whether you’re dealing with a personal issue or one at work. We are lucky to have so many resources available in the Bay Area (and beyond). Take advantage of them, because they will help you.

6.      People And Living A Fulfilling Life Are More Important Than Work And Material Things

This has always been true for me, but it became even more clear because of my caregiving experience. When I look back on my life, I want to know I’ve checked off as many things as possible on my bucket list, have accomplished my most important goals, and have truly loved, even though that may involve getting hurt. As the great Rabbi, Harold Kushner said, “No one ever said on their deathbed ‘I wish I’d spent more time at the office.’ “