Dear Caregivers —

Whatever challenges you face in caring for your loved ones today, know that with the passage of time these challenges will change. The current issues will fade, and there will be a new set of challenges awaiting you to solve…or at best, survive.  When you’re feeling like you can no longer persevere, remember you are warriors and time and patience are your allies.  Hang in there!

— TenderLovingElderCare.com

As a child, I was raised with a sense of paranoia about the unknown that continues to affect me to this day.  Because I am the eldest and also the one who was “most responsible” as a child, I assumed that I would be the one to take care of my parents as they aged.

We have a long history of taking care of elder bodies in the family.  Although my maternal grandparents died relatively young, their siblings lived into their eighties and nineties and my parents both shouldered the responsibility of taking care of them.  For these folks, that meant taking them shopping and to the doctor.  Until a major health event occurred, they each lived on their own until they chose to live in a facility which would help them if needed.

There were two situations which seemed to stand out as different.  My mother’s Aunt Bee had several incidents of bowel problems.  In retrospect, I’m not sure whether they were actual obstructions or if what happened was that she took enough meds to “regularize” herself that eventually her system was so messed up that it required hospitalization to straighten it out.  I do remember that there was some conversation about removing the meds from her control and having her sister keep track of what was taken and when.  Again, in retrospect, it seems possible that at the very least she had some memory problems.

My paternal grandfather, on the other hand, was a real problem.  Although, for a while, he was “manageable,” eventually he reached the point where he was so difficult that he was thrown out of several care facilities because he was so violent.

Not What I Expected

Instead of having responsibility for care taking my parents, I have the responsibility for closing down their home.  If this had been our family home, I’m sure there would be a lot more emotion associated with the task, but as it is, I never lived in this house.  To some extent it is like excavating an old ruin and trying to determine how the natives lived.

My mother was placed in an Alzheimer’s facility in 2003, though as you may know if you have experience with dementia, things were not as they should be prior to her moving into the facility.  Once she was no longer living at home, NOTHING was done to maintain the place.  Dad was so used to being waited on that Mac had to find someone to wash Dad’s clothes because he didn’t know how and had no interest in learning.  Every meal was eaten out, or at the very least, picked up and brought in.

The house has three bedrooms and an office.  It also has two full bathrooms and a ¼ bath.  I only tell you this to give you a sense of how much stuff can get shoved into a house.  Because of the dementia, or maybe just because they were always disorganized and hiding things from each other, there are papers EVERYWHERE.  While inventorying and packing up the china, I found inserts and envelopes from a monthly bill mailing, probably from the late ’90s.  Empty the contents of a drawer and I might find linen napkins, a woman’s slip, an evening bag filled with hard candy that has to be at least 10 years old and a Talbot’s catalog from sometime in the ’80s.

The other thing that is fascinating is that there will be several of a particular item.  For example, there are fax machines throughout the house; a couple in the garage, another in the front bedroom, a fourth in the middle bedroom and finally a working fax in the office.  While Dad loved technology, he really didn’t get along with it very well, so his solution was to replace the “broken” item.  It is quite possible that with a little bit of patience and maybe some replaced cartridges, that some of the faxes will work.

On a different scale, my mother seems to have bought bottle after bottle of dried onion, onion salt and onion flavoring, the same with garlic seasonings.  She clearly felt a need to season whatever she thought she would be cooking, perhaps long after she had actually stopped cooking.

A Fine Line

As amusing and amazing as all this is, it is also disturbing.  This is my second week sorting and cleaning and tossing and donating the things in my parent’s home.  I took two weeks off in between the weeks that I am here and STILL it is overwhelming.  This time I’ve done a better job of staying balanced.  I’ve exercised, meditated every day and written for the blog and STILL it is overwhelming.

As I work, I wonder.  I know that when I was a kid, things were always disorganized.  My father had his office in the basement and there wasn’t a square inch of horizontal space that wasn’t covered with paper.  Is what I see just his basic disorganization taken to an extreme?

My mother always bought in quantity based on the sales.  If it was something that my family used as a staple, she’d buy it by the case load on sale.  This resulted in some not-so-funny incidents of trying to sneak things into the house when Dad wasn’t around and then trying to find a place to hide the stuff.  When you opened a cabinet, your odds of getting something dropped on your head (if the cabinet was high enough) or on your foot were pretty good when Mom was in a stocking up mood.

Added to this is the fact that they were both depression children.  As such, they seldom threw anything away.  If something wasn’t working, just set it aside, you might be able to use it someday.  So, I have a house full of Beta video tapes (I bet some of you don’t even know what those are), 8-track tapes, cassette tapes with the tape pulled out, etc and so forth.

Many Questions, Few Answers

Although I write this in a humorous vein, it masks a serious question.  At what point is it the child’s responsibility to step in and take care of the parent?  We all resist losing our self-sufficiency.  Most of us have lots of opinions and don’t take advice well.  Are we doomed to repeat what our parents did because we lack the flexibility to know/understand when we could use a little bit of help?

One component of dementia can be diet.  Is the elder body eating healthy foods?  Are they eating regularly?  Another component is mood.  Are they lonely?  Are they depressed?  And most important of all, how much could I, their child, affect either of these factors?

I keep thinking… am I doomed to become the female version of my father, hiding everything from everyone, complaining of loneliness but unable to make friends?  Was there a basic problem that none of us could have helped with or did we miss the chance to change the outcome?

I don’t have the answers, just lots of questions.  But I do know one thing.  Dementia is a wavy line.  Where personal idiosyncrasy ends and dementia begins can be a difficult thing to figure out.  I and my family have been struggling with that question for the last decade.  I think we all will be wresting with this one for many years to come.