Monday Musings

Thoughts on my Mother.

At 82 years old, she has a body devastated by Parkinson's (PD) and the resulting dementia which is a hallmark of late stage PD.   First symptoms noticed by us, her children, when she was 65.

It is becoming increasingly difficult for her to move her limbs.  She is rigid and unbalanced and always afraid of falling because she cannot right herself.  The typical PD dementia began to take hold a few years ago.  We all are coping with it in our own way.  Dad tends to scold her for her mental gaps (sad, really) as if she has any control.  I have dealt with dementia before, with a old friend, and learned to go with the flow.  No point in fighting it.  Best to make note of it and move on.  Redirect the conversation, or simply ignore the strange incoherent statements.  It is present every damn day now.  Her long term memory is still very sharp, but when it comes to daily things, she is confused.  She'll get an idea in her (she recently thought I was deathly ill) and won't let it go.

My husband and I managed to get my parents situated in a great retirement facility which includes memory care.  That has been a great relief to us, and to my parents.

When her body grew me in her womb, and for years after,  I was a central focus of her life.  It was a mixed bag of love, and adoration interspersed with  extreme weariness, frustration and sacrifice.  She was young, and already had one child in the world.  An 18 month old.  I can't begin to imagine.  I was a preemie, with underdeveloped lungs and low weight.  I grew up with stories of how my father would get up in the night just to make sure I was still breathing.  Meanwhile, in another room, their other baby would howl to wake the dead whenever she woke to find her pacifiers missing.  More stories there:  dad hearing the pacifier hitting the floor and jumping out of bed to retrieve it and lodge it in place before the screeching began (how does one actually here a pacifier hitting the floor?).  It's a wonder they got any sleep at all.

Dad got a break of sorts when he left daily for the office.  Mom, however, bore the major responsibility for diaper changes, meals throughout the day, activities to keep us busy, naps to enforce (sweet quiet for perhaps an hour), laundry to wash, dry and iron; sibling disputes to sort out and making sure the kids and house were well in order when the master returned home.  And then another child came.  All before my mother was 25 years old.  That's how many did it in the 1950s, wasn't it?

I helped my dad for 3 years take care of her at home.  I was happy to do it, but it was exhausting in every way.  Dad is 85 and he's starting so slow down and has his own mental confusion going on. Probably because he is doing too much.  I sat my parents down last year, explaining that I could no longer help with mom's care while dad was away on week long trips.  The sleep disruption was a big thing for me.  The constant stress of meeting her needs, which are basic but frequent, was not good for my health and I was suffering physically.   I was honest and let them know that I felt I was failing them, I felt guilty for not continuing with her care.  It was necessary, however, very much so.

So dad will be going on a trip in September and mom will go into the skilled nursing facility at their retirement community.  It's a very nice skilled nursing set up, and they provide respite care for the spouses who need it.  Dad needs it.  It is likely to be confusing for mom, and she may not be very happy there at all.  With her confusion, she may believe she's in the hospital and worry about that.  I plan to visit every day, maybe take her on a stroll in  her wheelchair, perhaps even go to their apartment for a couple of hours.  I'll see what she wants to do. 

As many of you have already experienced long term care with your parents, you know how damned difficult it is.  Whether you are physically present or far far away.

It leaves me knowing that I would like to go quickly when I do go, and that I do not want extraordinary measures taken to keep me alive.  My daughter is an only child, and she will have to contend with a father (who has heart problems) and a mother (with diabetic problems).  I'm doing everything in my power to ensure that I have arrangements in place to ease her burden.  Her father hasn't thought about it, and I'm urging my daughter to talk with him about it. 

Who said, "Getting old is not for sissies"?  Too right. Watching someone you love physically and mentally decline is not for sissies either.

There are still plenty of sweet moments.  For that I am extremely grateful.