Shoulda, coulda, woulda

I am currently reading a book that seems totally unrelated to life with mom.  In this book, the author speaks about current decisions, situations, circumstances reflecting the choices previously made.  Let me give a simple example:  someone who eats a healthy diet and exercises regularly in their twenties and thirties has a better chance at facing their forties and fifties in good health.

I don’t read copious amounts of research and literature on dementia, but I have tried to be a little more educated especially as I deal daily with life with mom.  What I have overwhelmingly found are warnings – warnings to those of us who can read the research.  Exercise.  Eat well.  Stay active.  Don’t take things for granted.  Who knew there is a correlation between high blood pressure, high cholesterol, and chronic conditions and dementia?  There is little out there between medical white papers and blog type articles and much of what is said is repetitive.  What I have learned unfortunately, does little good for the one on whose behalf I do the research.  What I have learned is helping me become educated about the choices I am currently making that will have an impact on me in years to come.

Here is the other part:  I regret not knowing the things I know now for mom’s sake.  I have a list of shoulda, coulda, woulda items that span the last 10 years or so.

  • I should have been more involved in mom’s health – keeping track of major events and researching the impact of such on her, keeping track of her daily regimen of diet, exercise, and medication, and being more tuned to her emotional state.
  • I could have helped when she was first diagnosed because apparently, there are things one can do!  From what I have read, we could have changed her diet, gotten her plugged in to a program, explained things to her while her executive functions were not totally a mess, and prepared ourselves for the changes that would inevitably come.
  • I would have been more supportive of the sister in whose care mom has been these last 10 years.  I am grateful that as a family, we are doing better to support each other, but I shoulda, coulda, woulda.

So, life with mom is taking a course that is irreversible.  We can do little else but make sure she is taken care of.  But, for those of you that will read these words, take care of yourselves – I know it has become a priority for me and my family.

Tick tock

The clock in the room is ticking.  Were it not for the fact that I know I could leave when I wanted or I could choose an activity to do – like sewing or cooking or writing a blog post – the sound would drive me crazy.  I have often wondered (not a good thing sometimes) whether we are guilty of pushing mom towards more forgetfulness.  I know age plays a huge part because I can see in my own self a decreased ability to learn quickly or to get up from sitting on the floor – I am no spring chicken!  Could there be a correlation between social inactivity and the deterioration of the mind?  I have actually found lots of information, speculative as well as proven, concluding that physical inactivity leads to chronic illness, deterioration of the body (I want to say, “duh”), and deterioration of the mind as well as other things, but what about isolation and social inactivity?

Here is the question of the day:  do we put mom in a care home or keep her at home?  We have chosen thus far to keep her in familiar surroundings.  She is in a clean house with the laundry all done and with the exception of some weeding, there is not much to do.  Mom is in her room playing a game on her tablet.  There is nothing to keep her engaged and it would be very difficult for me to keep her physically occupied for 8-10 hours a day.  She can’t drive, cook, or even go out for a walk by herself.  She won’t watch television because she can’t follow what people are saying and doing.  So, we find ourselves in a dilemma of sorts and the guilt is simply overwhelming.

I have been in care homes where there is always activity – the TV is on and there are folks all around doing one thing or another.  Most are bright and airy and there are people to talk to.  As much as I take mom to the mall or out to run errands, there are hardly any times she is able to be social and we can’t stay at the mall all day.  The social aspect of living is an incredible motivator to live!

There is also the financial burden of a care home.  Truly, that plays a significant part of a decision like this, but we all still need to work so there is a cost no matter what we choose.

Today, I am exploring this option “out loud” for the first time and praying for my family as we will have to face this choice very soon.  What is driving me to think about this is the daily sight of mom sitting alone playing on her tablet because I have run out of conversation and things for us to do.  It is hard to put into words what we haven’t really allowed ourselves to think.  Sure, all of us would love to win the lottery and retire to play the rest of our lives, but I am certain my choice of play would not be in a room where all I heard was the ticking of a clock.

 

Home

One of the seemingly good ideas was to include mom in family activities.  So, all last week, we were on a road trip to see a couple of the grandchildren and two of mom’s three great-grandchildren.  There was no easy way to travel so we packed a lot of gear, made sure mom was comfortable and took to the road.

In hindsight, our goal was laudable.  In this time, when mom is still physically able and she can still identify family members, we would make sure the family could spend some time with her.  And, of course the fancy that mom just may enjoy herself and her extended family.

We were not entirely wrong but the week was trying and created more hardship for all of us – much more than we ever anticipated.  harleyI feel like I did not read my own writing or that any of my research seeped through my brain.  I wanted for some of what the “experts” said to be slightly off.  I wanted for our situation to be an exception rather than the rule.  What I wanted was something no one could give mom – a chance to break through the connection that is hopelessly lost and for even a few minutes, to have our mother back.

I have to say the great-grandchildren enjoyed their great-grandmother though mentally and emotionally, she acted their age instead of hers.  She pouted, fussed, worried, and didn’t sleep a wink until our trek home.  Oh, and “home”?  That is a strange word to her because she has no idea exactly where “home” is.  Home is where there is some routine, where things are familiar and there is little to process.  The verdict is – no more road trips – we are staying home.

 

It feels good

Some mornings, you would think mom is preparing for a marathon.  She walks at a very brisk pace that is practically a jog for someone her age.  Her morning walk is something she does not forget and very much looks forward to every day.

She used to walk leisurely on many days, but when her caregiver left and it was just her and me, I started her walking at a good pace.  I was proud that she could walk a mile in 30 minutes – we actually started out only walking half a mile.  Soon, she could do a full mile!

Now, after six weeks of this daily regimen, she walks at an average speed of 3 mph and this morning broke her own record going 1.95 miles in 35 minutes.  There is a part of me that wants her to slow down, but in my own exercise regimen, the “feel good” factor is easy to be addicted to.  So, why should it be different for her?

Could there be a correlation between some of her “improvement” and the qualitative and quantitative increase in her daily physical activity?  Maybe.  No, she still does not remember what she ate for breakfast or how to cook an egg, but she holds her head up high and lives vicariously through our lives.  She told me the other day how she enjoys being a babysitter although she has never changed a diaper or fed our little guy.  It’s okay – as long as she want to be a part, she can.

If I had sat down and printed out the research on dementia and were to try something, I would have chosen to increase mom’s activity level.  Good thing that is the way it turned out.  According to exercise sites and medical sites, regular exercise helps with:

  • reducing stress
  • improving sleep
  • decreasing feelings of depression and anxiety

It is no wonder then that mom shows up with her walking shoes on shortly after breakfast ready to hit the road.

Here is a link to an interesting article regarding a possible link between exercise as a therapeutic option:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3258000/