Friday, June 16, 2023

As the brain cells die, your world closes in...

This edition of the blog may seem a little disjointed and erratic. That is because I actually wrote it in pieces.  I just haven't felt like sitting and writing lately, which might be problematic as it is one of my coping mechanisms.

Here I sit, on your birthday, writing about you not having a good day.  I did the same thing last year.  I wonder if this will become an annual event?  Things leading up to it have been going well.  We were fortunate to find a seasonal site for our motor home.  I was nervous about how you would respond to changing your environment from the condo to the RV, especially since you are still looking for the "upstairs" in the condo.  But you were comfortable and "at home" in the RV.  I am guessing that the seven months we spent as "snowbirds" helped achieve that.

The two eldest daughters and three of the grandsons made the one-hour trek up to visit you for your birthday.  Just before they arrived, you fell asleep and you slept the entire day.  You missed some valuable time with the grandsons.  The older they get, the more their own activities will diminish the time that we get to spend with them.   We made burgers and dogs for lunch and then I went out to get pizza for dinner.   At about 8:30pm, we cracked into your birthday cake....  without you making the first cut.  But we saved you a piece.  We all had a good day together and everyone got home safely.

You did give me a scare when you woke up crying at about 2 am.  You were cold and shivering.  I tried to help you but you didn't want any help from me.  I cranked up the RV heat and stood there watching you until you fell back to sleep.  In the morning you had no memory of the event. 

I have learned that being a logical thinker, like I am, is a major disadvantage when dealing with the dementia.  There is just no reasoning with it.  We have had a couple of instances where we would have a discussion and both think that were were all set, only to find that we are not just on different pages, but in different books.  And that is my fault.  I need to remember that your reality is created by a brain that is damaged.  The dementia has altered your reality.  You can't adjust, so I have to.

We finally got our motor home situated on the seasonal site.  It is only one hour from home, so we can return quickly if we need to.   We found six days of quiet time there at the end of May and then had to go home for a couple of doctor appointments.   After the last appointment, we drove back to the RV only to pack it back up and head the thirty miles to Tamworth, NH for the rally of the Granite Staters chapter of the Family Motor Coach Association.  The small group had exclusive use of the pavilion for the weekend which was good because it rained the entire time we were there.  

I now understand why your doctor doesn't want you traveling.  After four days at the rally, we drove the RV back to the seasonal site.  As we pulled into our site, you asked where we were and why were we there.  You spent a week here and were only gone four days.  But your short-term memory is gone and you had no recollection of being here before.  The travel disrupts your routines and without the short-term memory it is hard to restore them.  After another week of quiet time living in 300 square feet, we headed back to the condo.  You have a number of appointments spread over the next ten days, not to mention our 51st Anniversary and Father's Day.  And we were able to sneak in another monthly "Sista's Lunch".

This might be a good place to update everyone on your condition.   We had an appointment with the neurologist and she has confirmed that it most likely Lewy Body Dementia (LBD).  There is no definitive test for it, but the brain scan showed a reduction in activity on the left side vs the right.  The  hallucinations (another indicator of LBD) vary from day-to-day.  They are still mostly about the presence of our daughters or your  sisters.  We are fortunate that delusions and negative behaviors have not materialized so far.  Recently you woke up in the morning and had no idea where you are.  It took about fifteen minutes for that to go away.  I suspect that will continue to worsen.

Along with the cognitive declines of LBD are the Parkinson's-like symptoms.   Lifting your legs to get in or out of the car has been a problem for many months.  That is getting worse as you struggle to drag your feet across the passenger side.  We carry the transport chair for any situation involving any significant amount of walking.  Recently you have needed help getting dressed.   At least the clothes are on right-side out.  The other issue for you has been the back pain.  The  x-rays and MRI of your spine document a significant  amount of scoliosis and stenosis.  The physical therapy helped a little, but the six steroid shots into the spine by the pain management folks did not help at all.  We have another appointment with them in a few days.

So that leaves the question that I am asked the most... how am I doing?  Being the primary caregiver can be exhausting.  Not physically, but mentally and emotionally.   After much thought, I have begun looking for in-home care.  It can take some of the load off me and maybe provide a face for you to talk to other than mine. 

1 comment:

  1. "How are you doing?" You are doing beautifully, Cuz, and Pam is so lucky to have you. Glad you are looking for help. Jess has developed back pain also - not sure if it's a Parkinson's symptom. She spends time on a heating pad and that seems to help. Much love to you both.