Tuesday, September 2, 2014

Can You Imagine?


Each day that I work,  I am realizing that despite all our plans and hopes to have a wonderful long life,  sometimes, (it seems often for me) life throws a big curveball to many good people. This week and last, I cared for 2 people that had just been diagnosed with Lou Gerhigs disease or ALS.  Now, this is not your run-of-the-mill disease.  The fact that both of these people had just been told they had a terminal disease…well, it broke my heart, and I know it was a terrible parcel of news for both of them.  Just think:  What if you’d been told you have a disease that has no treatment and no cure?

But still, this is real, and they need to know that they will be comfortable until the end.  As a professional, I suggested that they talk with our Palliative Care Team to find out how they could help alleviate the symptoms and keep them comfortable.  I sat with both of them, and we discussed this and why it would be of help.  And at the end, they could transition into Hospice, so that they did not suffer with breathing difficulties.  Since we cannot change the disease why not help them to pick options now so that they, and their families know who to call for assistance?  We should be able to direct a good death as well as a good life.

These are real-life examples of the fact that we cannot control or predict our future.  And it also reminds me that planning for the end in a very specific way can create at least some piece of mind.  So I encourage you to sit down and discuss What ifs? with your family.  Be open and honest and consider that we may be the next one that gets the bad news…or the one that ends up seriously ill or injured in an ICU.  None of this is nice to discuss, but it is reality.

Plan Ahead for Getting Older and the Potential for Continuing Care

When do you think you will start to need help with simple activities of daily living? What if you are hospitalized and cannot go back to your home? Wouldn’t you want to choose where to live instead of your children (if you have some)?


We all want to maintain control of our lives. We want to stay where we are, and this works well as long as we can take care of ourselves. Once we cannot, we will have to depend on others. This is one way to ensure that if and when you are unable to live alone, you can have made this decision and feel confident about it. We should think about this in advance, and consider how we will transition into another living environment.

An easy way to evaluate how well your home would work for you should you become disabled is to look around your home now. Can a walker or a wheelchair get into the bathroom? Can you get into the shower if you cannot get over the side of the bathtub? Could a wheelchair get through the doors of your home? Many homes have door frames that are less than 30 inches wide. Not enough to accommodate a wheelchair. Do you have to go up steps to get into the house or go up to the bedroom?

All of these questions can shed light on whether or not you can reasonably continue in your own home if you need help. There are several facilities that you could live in, from a continuing care retirement community (CCRC) to assisted living. Both offer housekeeping, laundry, meals, entertainment and activities. Many assisted living communities allow the residents to live privately in an apartment, but also may offer skilled nursing should you need it for short periods of time.

The time to consider, evaluate, look around and choose is while you can. After you have experienced a serious medical event you may not be in any shape to make your own plans. You can find out more information at the caregiving resource center: www.CARF.org.