I am sorry that the quality of this picture is not great because it is such a wonderful picture of Bob comforting his mom while she was sundowning and became very confused.  

We were at her niece's home for Christmas Eve dinner and it was just us and her niece's husband and their 44 year old son.. very low key.  I watched as the look came over Betty when she gets confused and agitated.  Bob got up from his chair and walked over and sat next to Betty and answered her questions about where she was.

When we were getting ready to leave for the three minute drive back to the house Betty was searching for her things as though she had been living with Paula.  For the time we were there she enjoyed herself until the sundowning came over her.


One thing I have not mentioned is that we came to live with Betty on the 16th.  It has been rough but has shown some signs of becoming our new normal.  I told Bob it would not be long before she would think she is visiting us not us in her house.  There have been glimmers of that already.

Ruth - Chapter 1

Time To Make Decisons

The time has come to make the very hard decisions concerning Betty.  We visited our first, and high-end of what Betty can afford, Memory Care facility.  We spent two and a half hours talking to the sales person, (my term) and looking at the Memory Care Unit.  When we walked in thru the keypad entrance the large group was sitting in the rotunda, singing.  Some were singing and some just looking around like deer caught in the headlights.  We were told that it had been a big day for family visits but no family were there then.  

They allowed us to go into one of the private rooms.. large enough to include a bed, small couch and her own TV.  There was a private bathroom with toilet.

Then we were going to see the semi-private room which is really what Betty can afford but there was a woman laying down so we couldn't go in.  My impression was..SMALL.  Was that the ploy to get us to go for the private or was it simply so that we would not get a vision of just how small the room would be?  Those are things that came to my always cynical mind.

The place was clean, staff attentive and very friendly.  It was possibly ideal.  But, it doesn't feel like Betty to me.  They have their own private dining room with fiesta ware dishes and menu's to choose their breakfast, lunch and dinner.
It is truly a lovely facility but, it just doesn't feel like Betty.

I went to bed still burdened with the thoughts of putting Betty in such a place.  Their suggestions for little white lies to get her there.  Her hug last night rippling through my mind.  Her fear, faith in us, her happiness. All of those things churning through the terrible sleep.  I awoke and turned to Bob and said, through tears, "I just don't think I can do it!"  I really do not think I can.  

We have talked about the impossibleness of moving in with her.  Their arguments, my frustration, just no privacy.  We have now talked about the possibilities of moving in with her.  Not spending on a new house just moving in and spending to make it a place we could take care of Betty until she is not aware of her surroundings or is incontinent or bed bound.  We are facing that now because we could not hurt her and we cannot lie to her.

And so.. we are visiting one more place before we make a decision and before we mention it to Betty.  It is well with my soul.  Maybe I am more Ruth than I had thought.

Will You Love Me In The Winter - Brian Doerkson

"I've Never Had This Before"

Yesterday Betty had another episode of acid reflux pain.  Bob had called earlier in the late afternoon and she mentioned that she would like to think of solutions for her living arrangements.  Of course when trying to list some solutions she said that she didn't like those options and wants to remain where she is, as is.

Then, she called about two hours later and was crying and describing pain below her breasts.  I recognized this as a recurring pain that she gets when she has not eaten regularly or she is upset, in this case... both! Bob told her that she has had this   We told her not to lay down as that would make the symptoms worse.  Bob tried to ask when she had eaten but she was hearing none of it.  So, I said Betty.. I am coming over.

Bob decided to come too and off we went.  I did call her when we were actually in the car and said "we are on the way."  She seemed glad and far less anxious when she answered.  The voice changes almost immediately from whiny to normal.

When we arrived Betty was in her chair and feeling almost 100%.  She insisted that she has never had anything like that before and even with reminding that she was hospitalized over night for these same symptoms, she found it difficult to accept.  I did get her to undo her tight pants. "These are not tight!" I did give her a Tum's.  "Do I chew it?"

After a few minutes I suggested some oatmeal for dinner.  It was after 8 p.m. by the way.  I got up, made the oatmeal and she downed it pretty fast for someone who was suffering in terrible pain 30 minutes before.  We stayed for quite some time until we were sure she was ok and then headed home.  

She does not remember that she has a knee replacement.  Does not remember the stomach issues that caused her to have to take Nexium.  Clearly, people with dementia need health records at hand.  I am not sure I know all I need to know.  More to work on this coming week.

Long Time No Write

It has been a very long time since I have blogged about my journey with Betty.  Much of that I want to say is due to restrictions put upon my journaling about Betty by family, afraid that Betty's privacy was being infringed upon and that my journaling would somehow put her in danger.  I internalized it as criticism and stopped journaling.  Then, I lost my grandson Ethan and I used that as an excuse not to journal.  I was still living this journey, still struggling without communicating about it, keeping it all inside and just being stressed.

I have made a decision to go ahead here and journal, to open up about our daily walk.  I have no way to go back and have a visible path of the progression of this disease.  I have a fairly good memory but I tend to block out things that disturb me.  I can't go back and write about the shower struggles; the good, bad and ugly.  I have no reference point.

I can say that we are still here and are not traveling with Betty. I can say that we do not feel, at her current level of disease, it would be anything but detrimental to her health to change her environment other than the possibility of a permanent move to a memory care unit.  Betty does not do well with change.  She is ok as long as things are routine but a doctor's appointment can wreak havoc for days.

We are in the place where we MUST move forward with either full-time in home care or a placement. Betty is very unhappy in her current situation.  The change is not easy for Bob and the process is slow.  I have no idea what is feasible.  I wish this were easier.  The stress is pretty scary actually.  

I am going to journal. 

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