Tuesday, July 31, 2012

Changes in Latitude, Changes in Attitude.....Whatever You Call It, That is What Life is About

I ran into a friend at the grocery store yesterday.    I had read in the newspaper just last week that her husband had died after a long struggle with a neurological disorder, complicated by a stroke.    As we hugged and exchanged hellos, I mentioned to her that I had read about her husband's death.    Like most people who have been through that ordeal, she appeared to be filled with mixed emotions.    Relief that suffering for his pain and disability is over.   Sadness as the impact of the loss begins to settle in as she adjusts to a new life without him.   Confusion and dismay at who she is now and what her life will be like are consuming most of her thoughts.   The mountain of paperwork and tasks  surrounding his illness and death that must be settled have not even really started for her, but she is anticipating that, too.  

As we stood in the aisle and talked of what it's like to care for someone with dementia,  I began to remember my experience when Larry and I took care of my mother for three years before her death in 2006.    No one really knows what they will do in that situation, even though people often speculate and opine on what they think they would do.   In our situation, we were caught completely off guard since Mama lived in a group home type setting in another city where my younger sister lived.    When my sister died very suddenly and unexpectedly, the responsibility of taking care for mama fell completely to us.    It was quite clear after we had her with us for a few weeks that the living arrangement she had before Ginny died was not going to work any more.    

So we took on the task and set about to get her moved in so she could live with us permanently.   We got a Durable Power of Attorney while we still could legally get that done so I could pay her bills, manage her money and make sure I had the authority to make important decisions regarding her health.   We arranged to store a lot of possessions that wouldn't fit in her room at our house and that she no longer needed.    We assessed our house to make sure she could be here safely and without worrying that we were overlooking something that could cause her harm.

It was made doubly hard because both of us were still working at the time and we had to re-arrange our schedules so that someone would be here with her the majority of the day.     In the beginning we could leave her for very short periods of time and she was OK.    That didn't last long but it gave us enough time to find alternatives for when we both had to be at work and couldn't be at home with her.   Once in a while I even took her to work with me when we couldn't figure out what else to do.    It was a difficult time but we managed and somehow got through it.    

And the thing is: our story is not unusual or a rare occurrence for people in our generation---the baby boomers.     Some friends we met for lunch just this past Sunday are in that awful place of deciding what to do about her mother.   She is clearly in need of a different living arrangement, living some 8 hours or so away from them.     They both work, she is not quite old enough to be at the mandatory 59 1/2 to retire without penalty.    Too young for her Social Security, but if she can get to the right age, she can draw her pension.     That age is still about 6 months away.    So what do they do about her mom in the meantime?     Hard questions.   No easy answers.   

I keep hearing stories like this and running into friends and relatives who have an amazing tale of sacrifice and so much love and devotion to care for a loved one.  Usually, spouses or children feel the need to care for their loved one out of loyalty and love.   Sometimes the choice of what to do is driven by financial stresses----lack of resources to place the loved one in a special facility for those with dementia or other disorders requiring special care.    Other times, however, it is complicated by the fact that the loved one has specifically asked not to be "put in a home" or difficulty in finding an opening or in finding a place that you consider suitable or decent.  

Truthfully, there are many, many resources available if you live in a fairly large community, but in our case, we attempted to and did care for my mother for a long time before we got outside help.     Looking back, I know we waited too long because we were both at the end of our psychological and physical ropes.    I would tell anyone facing this to monitor themselves and start finding help before they begin to crumble under the weight of such an important and difficult task.    

The long and the short of this is that many, many people in our generation are going to be involved in the care of a loved one who may be elderly, sick and possibly even suffering from dementia.    We are living longer these days but the bad news about that is that as we get older, our risks for developing those kinds of illnesses rise with our age.   Risk factors like falls, strokes and other illnesses that contribute to mental or physical frailties go up with each birthday.     Our ability to prolong life is improving but sadly we are lacking in the ability to keep those other bad things completely at bay.   

They say a lesson to the wise is sufficient.   So there is a lesson to be learned here.    Life is about change and sometimes the change you experience isn't something you bargained for.     If you get yourself too wedded to the idea that things will stay the same.....the same house, the same spouse, the same way of life.....you are fooling yourself.     If you can, you need to start talking about the "what ifs" long before they come knocking on your door.    One day, on another post, I will talk about what some of those WHAT IFS are, but for today, my suggestion is that you begin that process of at least thinking about them.     It won't be easy and you might even squirm just a little when you start talking about things like your mortality and the illness or death of a spouse or other loved one.    But CHANGE is inevitable and starting to face that and deal with it, even plan for it, is one step that you will be glad you did.

I am thinking a lot about my friend and the loss of her husband of 45 years....almost the same amount of time Larry and I have been married.   I am thinking about our friends who are struggling with what to do about her mom and how their lives will be impacted with whatever decision they make.    I know that these days and weeks and months ahead of them won't be easy but they can and will make decisions and will prevail.     We did and I know they can, too.    If you keep your head, educate yourself, ask for help and take care of yourself, you will come through it and live to tell your story so others can benefit from what you learned.   

Happy Trails,