Thursday, July 27, 2023

The Long, Slow Decline Continues...

 Hello, dufus husband here!   That whole conversation still cracks me up.  But I don't mind.  I know that it is the damaged brain cells that are doing it.  The good brain cells would never call me that.  😀  This is going to be a very boring blog post.   While Pam continues her decline, there have been no major new issues.

We are into our third week of home health aides (HHA).  They are here for four hours every Tuesday, Wednesday, and Thursday.   So far things are working well.  I sat down and spent some time thinking about just what should the HHA be doing.  I put together a list and prioritized it.  I then sent it to the agency.  They incorporated my thoughts into their Care Plan.  Number one on the list is keep Pam engaged and socializing.  Also on the list is assisting her when she moves around the condo, takes a shower,  or gets dressed.  I purchased a number of sticker books, paint with water pictures and a couple of puzzles.  The objective is to keep Pam engaged.  When there is little to do, Pam just nods of.

Having someone here allows me to go run errands, putter around the workbench, or just be on the computer.  Today I was able to run to the hardware store and pick up some supplies.  Last week, I was able to run to the pharmacy.  So I am pleased so far, but not sure of how Pam feels.  She has always been fiercely independent and that continues despite her decline.  She gets annoyed when I or the HHA are constantly asking if there is something we can help with.

Speaking of decline, the physical decline continues to be the most visible.  She has lost both strength and range of motion in her legs, to the point where she can only lift them about two or three inches off the ground.  So walking is a shuffle more than anything.   When the ground is uneven,  it becomes a real chore.  Getting into or out of the car is nearly impossible without assistance.  She drags her foot across the floor and then can't lift it over the door thresh hold.  I noticed that she has tremors in her arms while she is sleeping.  And coughing is a real problem.  I assume that she does not have the strength to cough normally.  Instead, it is a steady chirping sound.

On the cognitive side, I saw a new one today.  Pam is diabetic and is supposed to prick her finger and measure her blood sugar.   The HHA sat with her today to help her do that.  But Pam could not remember the sequence of events to arm the pricker, ready the meter, and do the test.  The HHA is not allowed to actually do the testing, so I had to step in and do it.  The reason the HHA can't do the test is that it is considered a medical procedure.  The agency charges a higher wage for an aid with nursing credentials.  I am also starting to see a change in personality.  We were sitting at the table eating breakfast and I mentioned that she didn't seem happy and wondered if something was bothering her.  That conversation led nowhere.  I wonder if she knows who I am?

And Pam's short-term memory is just non-existent.  For example, just before the HHA arrived today, I asked Pam if she wanted some lunch.  She answered in the affirmative.  I slowly listed the things I can make her and left her some time to decide.  About an hour later, the HHA came to me and said that Pam is still waiting for her soup for lunch.  But she never told me what she wanted.  Another example is the shower.  This morning we had a discussion about her need to shower today.  She agreed.  After dinner, I asked her about a shower and she insisted that she had already showered.  I can see that this shower business is going to be a real issue.   Maybe I can get her to shower with me.  😆  Yea, I am not going to count on that.

We went to a concert in Stark Park in Manchester on Sunday.  One of our daughters and our neighbor were there.  Pam spent the entire time in the transport chair.  We tried to keep her engaged in conversation, but at times she just nodded off.    It was a little funny because we were only about 30-40 feet from the stage.  And with the music blasting, Pam was asleep.  Yet at times her legs and arms were tapping to the beat of an Eagles song.  The rest of us enjoyed a great performance.

As I am typing this, I hear the shower running.  I guess it won't be so bad after all.  I tried the door handle on the bathroom and it is locked.   I guess I am not allowed in.


  1. Be careful about that bathroom door being shut and locked. My mom did that and fell in the bathroom, she ended up against the door. While I was waiting for the EMT’s to arrive, I had to literally tear the door apart to get inside it since she was against it and could not move. After that I did not replace the door, I just put a heavy current in the doorway. Did not want to go through that again.

  2. I'm glad you have the HHA there now and that it is working out. This is just to much for you to bear alone.

  3. Bruce, I agree with Tonya.... I would recommend you remove the lock... Keep up the good work.. You have a tough job....

  4. Bruce,

    Thanks for the update; we continue to pray for you and your family. I'm glad you have the HHAs and they are working out. I agree; think about replacing your bathroom door with a shower curtain. My sister (brain cancer) fell and got her head stuck between the toilet and the vanity. She was so physically (and mentally) debilitated she could not extricate herself; it took the EMTs and fire dept. The peace of mind of knowing you can get in, if you need to, will be worth the loss of privacy.

    50 years ago, you and Pam promised "for better or worse, in sickness or health, ,..." - you are living it. You are an honorable man - my hat is off to you!