photo credit: Torley

Throughout our lives we are confronted with situations that we just need to get through.  Things that are out of our control, and that can only be resolved with the passage of time, can make us feel anxious.  In my case, it’s my father’s rapidly worsening dementia.

Dealing With Dementia

Dementia is a difficult condition for both the patient and the caregiver.  For some period of time, the person with dementia is not really capable of taking care of themselves, but also won’t allow you to take care of them.  You are in a position of “damned if you do and damned if you don’t”: concerned about their safety while trying to facilitate their autonomy.

Dementia is not actually a disease but rather a collection of symptoms with many causes.  Some causes are treatable, some are not.  When the elder begins to exhibit some symptoms of dementia, the caregiver may want to take them to a doctor for a diagnosis.  This can be a real challenge as the elder will often refuse to go.  If you are wrestling with this challenge, you should be aware that sometimes there is a diagnosable condition and other times the best the medical community can tell you is that you are right, the patient is exhibiting signs of dementia.

If this were a conclusion that led to a recommended treatment, or allowed you to take control and make a decision about what is best for the elder, it might be difficult, but manageable.  It is seldom that straight forward.  Because dementia is a “back and forward” condition, the elder will have days when they seem just fine.  This back and forward process gives you glimpses of the person that used to be there and raises your hopes that things will get better.  At the same time it reinforces their perception that they are OK.  The result is that you are in limbo – not relieved of the responsibility for their safety, not able to control circumstances to keep them safe.  It’s like adolescence in reverse… they’ve got the car keys and you can’t ground them or take the keys away.  And many times, they are just as moody as your teen.  (But at least they’re not asking for money…)

Coping With Being Out of Control

This post is about techniques for coping when you’re out of control.  Aha! You say, I’m always out of control!!!  What’s your problem PattiAnn, don’t you live in the real world?  I concede your point.  None of us are really in control of our destiny.  We’re often one phone call, one email, or one letter away from having to acknowledge just how out of control we are.  Dealing with an elder with dementia brings a different sense of helplessness.  Maybe raising teenagers helps prepare you for it, but I don’t have any teens so I’m blissfully unaware of that particular challenge.

You may already know this, but the cure we most often employ for being out of control in one area of our lives is to try and get control over the other areas of our life.  When done in moderation, this can help with your ability to cope.  It may also provide the perfect opportunity to rebalance the workload among family members who are now old enough to help out.

For me, what has worked is to think through how I might make the new situation work.  Many of my answers to life’s questions come from books, written by people who have gone there before me and solved some of the problems.  So reading is one way that I prepare for the unknown.  The books that I find help me to know that I am not alone.  It may not give me an answer, but when someone has been here before – and struggled – it makes my struggle seem less unique.  (For a good resource on dealing with elders with dementia, read Elder Rage or Take My Father… Please! by Jacqueline Marcell.)

In a previous life, I planned complex projects.  Planning ahead gives me the illusion of control.  One of my major issues is what to do with my “kids.”  I have a dog and a cat.  Normally, this wouldn’t be a problem but my father lives about six hours from me.  Unfortunately, my doggie gets motion sick within a couple of miles from home in a car.  If I’m gone for a short time, I can board her, but for longer I want her with me for my own sanity.  She must be walked, therefore I have to leave the house – at least for a short time.  Also, she’s the best listener I know and she always agrees with me.  What more can you ask for?

On a more serious note, how will I find time to participate in the blog?  How do I stay connected to my book club?  How do I maintain my mental and physical health?  Where are the local bars? (Just joking – drinking at home is cheaper and safer.)

I know that no matter how much I plan, it will probably not be what I expect.  There will be challenges to overcome – like getting Dad to leave the hot water heater on all the time so I can shower every day!  It’s currently only on one day a week.

As I wrote above, when things are out of control, we try to control what we can.  You notice that my planning list is missing the #1 Issue – my dad.  When will he need me?  For how long will I be there?  I may be able to control lots of the little stuff, but I can’t control the most difficult part of the equation.  So, I plan what I can and pray for the strength to handle the rest.

How do you control the uncontrollable?  What techniques do you use to maintain health and sanity?