Note – After I created this post, I realized that each topic could be expanded upon and discussed more.  I created an 8-part series to more in depth.  Each heading links to the post for that topic.

I have been the primary caregiver for my mom for over a year.  Mom has early to moderate Alzheimer’s disease, and she lives with us in our home.  While Mom functions  okay with her physical needs,  I help her with things like remembering to take her medicine and taking her to her doctor appointments.

Last week, I had the week off from work so I was around Mom a lot more than usual.  It struck me how much her memory and ability to comprehend things has declined.  By the end of the week, I felt mentally drained and exhausted from being around her.

At first, I was angry with myself.  What is wrong with me?  I read all the time about family caregivers who have to deal with a lot more than I do.  I don’t have to bathe Mom, feed her, or help her when she goes to the bathroom.  What right to I have to feel sorry for myself and complain?

After giving this some thought, I realized that even though I’m not providing a great deal of direct care for Mom, I still bear a huge burden of responsibility that will only increase as I continue down this journey of caregiving.  When you provide long-term care for someone suffering from a debilitating illness like Alzheimer’s, the journey is not a sprint – it’s a cross country trek that most are not trained and prepared for.  While this journey can be difficult and treacherous at times, there are things we can do to better equip ourselves to be successful on this journey.

Get Information

When runners prepare for a marathon, they study the route so they are familiar with the course.  Of course, everyone’s caregiving journey is unique, but we can learn from those who are on a similar path and from subject matter experts so we know what to expect.  Having a good understanding of the illness or condition you are dealing with helps to prepare you for what lies ahead.  It is also important to know the resources that are available so you will know where to go for help when you need it.

Take Care of Yourself

Can you imagine trying to complete a long distance race without first eating to have energy or drinking water to keep yourself hydrated?  The same goes with caregiving.  You HAVE to take care of yourself, or you will not have the energy and stamina needed to carry out your duties of caring for someone else.   It is vital that we care for ourselves physically by eating healthy foods, getting rest, and exercising.  We also must care for our mental health with positive thoughts and healthy relationships.  Even the best runners need breaks.  Take advantage of respite care options when you need it.

Use the Proper Equipment

Marathon runners know that using the proper equipment is key to racing well.  They don’t run in flip flops or heavy, bulky clothes.  They use good, supportive running shoes and wear lightweight clothing that provides the least amount of resistance.  As caregivers, we need to use all tools at our disposal to help us to be more effective.  Maybe a pill dispenser or written schedule would help.  For those concerned about wandering, a senior alert bracelet might alleviate those worries.  There may be simple adjustments made within the home to make it easier for the care recipient to get around safely.

Eliminate Unnecessary Burdens

Just like the runner who runs with the least amount of extra weight as possible, caregivers need to let go of the weight of things like resentment and guilt.  Attending support groups or talking with close friends about your feelings can help.  Many caregivers also have other responsibilities such as caring for their children and holding down a job.  Even if you can’t completely eliminate all of your burdens, you may be able to share them with a spouse, close friend, or use other resources that are available to help.

Pace Yourself

Last year, my son ran on the junior-high cross country team.  Every race, there would always be a couple of kids who would dart out ahead of everyone else, only to be passed up later by the ones who started off running slow and steady.  When we start out on our journey of caregiving, sometimes we expect too much from ourselves and try to do it all.  When we try to do too much too soon and fail, it leads to frustration and burnout.  Our journey is one of endurance, not speed.

Be Alert for Danger

A marathon runner has the advantage of running along a marked trail that is made to be as safe as possible.  Our caregiving route is not marked, and dangers could lurk around every twist and turn.  Just like a long-distance runner, we must be alert to our surroundings.  Is that a thunderstorm brewing up ahead?  Are there holes in the path that could cause us to fall?  Some of the biggest dangers that face caregivers include stress, burnout, and depression.  These can be harmful to ourselves as well as the person for whom we are providing care.  Being aware and alert to the signs can help us to recognize these dangers and get help when needed.

Have a Back-Up Plan Ready

There are times when a runner cannot finish the race.  Maybe they are struck with a sudden injury or illness, or perhaps the course or the weather conditions are too hazardous.   The race may also be a relay, where the runner completes the leg then hands off the baton to the next runner.  Caregiving is the same.  We are human, not super human, and it may be impossible for us to complete the caregiving journey ourselves.  Instead of beating ourselves up, we need to accept the fact that it may be in the best interest of the care recipient to hand over their direct care to someone else.  The care could be provided by another family member or paid, professional help.  Even if we are not directly involved, we can still be very involved from the sidelines.

Enjoy the Journey

Why would a runner subject their body to the rigorous demands of a long, demanding race?  There must be something in it for them, right?  I’ve heard runners talk about reaching a “runner’s high” while they run, or how they enjoy the sites and scenery along the way.  As we travel down our caregiving journey, there are some special moments for us to treasure as we bond with the one we are caring for.  Runners also feel a sense of accomplishment.  Caregivers should be proud of themselves and the service they are providing.

Conclusion

While our journey of caregiving is not easy, we can use information, resources, and support to help us avoid problems and to provide care for as long for as it makes sense for us to do so.  Most importantly, we can provide a better level of care and discover ways to find joy along the way.

This entry was posted on Sunday, June 21st, 2009 at 8:52 am and is filed under Caregiving. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.