November 27--my back

Well, it has been 20 years of lifting a wheelchair in and out of car trunks but now lifting a 100 lb woman on and off toilet seats is doing quite the final job on my lower back.  Chronic pain started for me about 2 years ago....this could be really bad down the road.  But I cannot worry about that right now.

This morning was not as good as yesterday morning--she needed help with everything again.  And then she surprised me by calling in a prescription to the pharmacy herself.  That was good!

I am trying to "stay in the moment" as so many dear friends have told me to.  "Be with her, stay in the present and listen to her voice" is something I was told.  I'm trying--it is hard.  I'm depressed of course--who wouldn't be.  But I'm trying nonetheless.  Mom has that depressed look on her face about 90% of the time now.  She has never had that before...I think this is significant to where things are and where they will be going.

Today I need to go to the stores for groceries, a few supplies for her bathroom and whatnot.  I have no help at home yet, no one to stay with her when I'm out.  She SHOULD be alright because she always has been in the past.  I will spread the trips out over the course of the day so she isn't alone for too long at any one period of time.

November 26--continued

Today was a battery of phone calls and a few visits.  The medical supply company came to swap out the horrifically noisy home oxygen concentrator and to bring new tubing and an evaporation connector.  Unfortunately there is so much humidity in my house that mom's nose runs even on this new version of the machine.  She's fine on the portable tanks though.  So I might have to deal with tank delivery more often than I care to.  We'll see.

Next came the nurse assessment from the VNA.  A delightful young woman who was also very thorough. But let's face it, Medicare pays for the barebones only so I'll be working with a social worker to figure out additional home health care, 24-hour care when needed, etc.  Hopefully I'm strong enough to take on some of this for a while and only have to have someone here 4 hours or so each day so I can shop, take a break, etc.  With the semester winding down and the spring semester not starting up until February I've got the flexibility of being available.

I'm tired...ok, I'm more than tired.  I've reached a new level of understanding what exhaustion is.  And sadly I think that I'll look back at this moment and think "Ha!  I wasn't even close to the TRUE state of physical, mental and emotional exhaustion yet."  Not very comforting but at least I'm realistic.

Speaking of realistic, the nurse today agreed with me:  mom has probably started down that last part of road and that the the journey won't be very long.  No matter how prepared I think I will be, I'm not stupid--I know I won't be ready.  But I'm also aware of her growing depression and the look of being tired in her eyes and face.  And I can't blame her.  How she has done what she has done for the last 20 years I have no idea.

I'll write as often as possible--I want to write daily.  I do not think many people will ever read this but it will be here as a chronicle regardless.  She deserves that...so do I.

November 26 -- better

Last night was horrific. Belligerent, abusive, bordering on hostile. Signs of dementia and hallucinations. Incapable of transferring from wheelchair to toilet.

This morning....clearly the pain has subsided enough for her to think straight. She actually went to the bathroom all by herself. I fell asleep on the couch in her room near the bathroom and the flushing of the toilet woke me. Then she did all her morning bathing and dressing with only a little assistance. Now she is exhausted--but I'll take that.

I believe I saw what lies ahead in the events of last night. If she continues to improve with regard to strength and will, perhaps her quality of life will be ok for a while. But I suspect the next time she "takes a turn" it will for the worse as they say.