Friday, April 28, 2016  afternoon

I was tired this morning after not sleeping much.  At 9:45 I told Mom to go visit Dad without me because I wasn’t feeling well and was tired.  She then suggested that I probably need to leave and go back to Missouri.  I told her I have to wait until we receive the report on May 9, and she got angry saying that I’m the one who is sick, not her, because all I do is “sleep, sleep, sleep.” She slammed the front door and left to visit Dad.

I thought she would be there until after lunch time, but she returned shortly before noon and was crying.  I stayed in the extra bedroom upstairs where I have all my stuff.  Decided to just leave her alone and stay out of her way. I needed some space.

She did Dad’s laundry and a few other things around the house.  At one point she asked assistance from neighbor Kevin.  He came in the house and explained to her something about the TV remote and the phone.  He also reminded her that the second remote is for the TV in her bedroom.  She has told me that the upstairs TV only has one channel, but I suspected she was not using the remote correctly.

At about 3 p.m. she told Kevin she was going to go see Dad and bring his clothes.  Kevin tried to tell her that she could bring the clothes tomorrow, but she said she was restless.  I understand.  I’m restless, too.  She came upstairs to tell me she was going to bring Dad his clothes.  I said, “Okay.”   A minute later she returned and asked if I wanted to go with.  “No.  I’m fine.”

If she continues being upset with me here, I’ll ask her if she would like me to go stay at the motel down the road. There are 10 days left until our return meeting to Thomson Memory Center to learn the test results.  I will have to make sure I get out of the house by myself during those 10 days…take some walks or go to the library to read magazines.  It may upset her, but I need to look after my own mental health.  Living her schedule is stifling and depressing.

I am planning a consultation with the police officer who called me about Mom’s early morning confusion incident a couple weeks ago.  I need to know what my options are if Mom receives a diagnosis of early dementia or mid dementia.  I also will need him to sit down and talk with her about options and my legal responsibilities as the only adult child, per Illinois law.

I wrote to someone recently:  “I was afraid of my mother when I was a child.  I’m still afraid of her as an adult.  How sad is that?”

Sunday, May 1, 2016 evening

Lots of ups and downs for Mom these past couple days.  It’s difficult to watch.  It’s difficult to know things will just get worse.

From hour to hour, I’m not sure what her mood will be.  The other day I actually did say to her that I could go stay at the motel down the road and she blurted, “No, no, no!  I don’t want you to leave.  I don’t want you to go back to Columbia.” Of course, within a couple hours she’ll be asking when I’m going home…telling me I make her nervous…complaining that she doesn’t know what I like to eat, etc.  It’s like a broken record.

Day to day…there are lots of broken records.

Interestingly, she didn’t explode today when I told her I won’t know when I’m going back to Columbia…that we have to wait until we get the report.

“What report?”

“From the testing you did earlier this week.”

“Oh, that.  I’m never doing that again.   Can’t they just mail it to us?”

I explained (again) that the visit is to make sure we understand the test results and have the opportunity to ask any questions.

“If you don’t want to go, that’s fine,” I said.  “I’ll record the visit.”

“No, no…I’ll go,” she said.  “But that’s too far to be going to a doctor for appointments.”

“It will be the last visit.  She just does testing and writes a report.  She’s not a doctor you would visit anymore.”

“That’s good.”

So, it looks like we’ll both go to the evaluation report visit at 2 p.m. Monday, May 9.

Anxious About the Test Results

I’m the one who’s anxious about the test results, not Mom.  As far as she’s concerned, she’s fine.

I’m expecting a diagnosis of some form of dementia.  If so, I also hope the evaluation will provide recommendations and/or specify what steps we need to take to ensure Mom’s safety and quality of life.

Thinking I know Mom, of course, I have a hard time thinking she will agree to any diagnosis or any recommended steps.  If the report recommends that she not live independently, then the shit will hit the fan.

Although getting to the point of having a diagnosis has taken a long time, I know the most difficult times are ahead.  I will have the diagnosis I need to justify needed adjustments/changes Mom will need to make, but I still won’t have much leverage.  I will need to arrange for Mom and me to meet with others who can comment on their recommendations:  neuropsychologist, primary care physician, Victory Lakes administrator and social worker, Mom’s two close friends – Dorothy (lives at Victory Lakes) and Barbara (lives in Nashville near her daughter), the officer who knows Mom from two visits, and perhaps an elder care attorney if she is firmly resistant to any change.

A week from tomorrow – that’s when we’ll meet with the neuropsychologist.  Seems like a long time from now.

Ups and Downs

Meanwhile, Mom is super aware that we are having company for lunch.  She keeps forgetting which day, but she knows she is making the twice baked potatoes and her cherry pie filling dessert.  Even though the lunch is Tuesday, she decided to make the dessert tonight.  That will leave just the twice baked potatoes to make tomorrow, a day ahead.  I’m staying out of the way.

It’s good for her to be busy.  She likes that.  Today was a particularly difficult day.  She had a major episode of being mad at Dad.  She lectured him, cried and carried on, and then she wheeled him down the hall in search of “someone in charge.”  I just followed from a distance.  She wanted to bring him home.  Immediately.  She entered one of the wings and I just watched.  She was confused and a bit lost.  Then she took Dad over to the nursing station and looked for assistance.  Dad was confused, unsure of where she was (behind him) and what she was doing.  She tried explaining, but he could not hear her.

His main nurse, Sherry, caught up with them and listened as Mom explained that she wanted to take Dad home.

“I know, Pearl,” she said, “but today is Sunday and no administrators are here today.  And I have to give Victor his medicine.  Let’s go this way.”  She led them back to the community area of the Sunshine Wing where Dad easily took his medicine and the “nicely cool” serving of water he insisted sharing with Mom.

Mom wheeled Dad to a corner area near the TV and they sat together talking.  I kept a distance and took a seat next to Virginia who is famous for frequently asking, “Please, may I go to the bathroom…somebody?  Can I go home?  NOW???”

I could see Mom and Dad talking…or at least trying to.  I’m sure Dad could not hear her or perhaps understand everything she said, but he certainly knew she was upset and crying and he was trying to help. At one point he even suggested she sit on his lap.  HOW SWEET IS THAT?

Once she calmed down she was ready to go home, but it was hard.  It is so hard for her to see him every day and then leave him every day.  It’s a constant grieving.

Interestingly, once we were home, she talked quite a bit about how she loves him “too much.”  “I think of him all the time.  I keep thinking I need to go see him.  This isn’t good not being together.  I don’t know how much time we have left.  I want to be near him.”

So I asked, “What would need to happen for you to be near him any time you wanted to be?”

That’s when she talked about maybe living at Victory Lakes.  It’s a conversation we’ve had a few times, but she isn’t sold on it.  She still believes she can take care of Dad at home, and I spent time reminding her of the level of care he needs and the emergency situations that could happen.

Then she decided she could maybe go stay at Victory Lakes for a couple weeks…to try it out.  It’s an idea that’s been suggested before and I told her I thought it was a good idea because then she could see him any time of the day or night.  She could just walk on over.  I asked if she wanted me to send an email requesting information about that possibility for a two week period and she quickly said, “Yes.”

Thirty minutes later she said, “Don’t do it.”

I didn’t.

A little while later she asked, “Did we see Dad today?  It seems like it’s been so long since I’ve seen him.”

“Yes, Mom.  We saw him today.  He saw that you were upset and asked you to sit on his lap.  Do you remember?”

“Not a lot.”

We need the evaluation report.  We need an official diagnosis of what is causing her frequent confusion and short-term memory loss.  Until then, she is totally in charge… and crumbling under the burden of fear, unhappiness, uncertainty, and guilt.