I am sitting in the ER watching my mother attempt to sleep.  The nurse just gave her pain meds, and they are just kicking in.  When she walked into my kitchen this morning, I said, ‘Mom, let me feel your tummy’, and sure enough, it was just as solid as a woman who’s six months pregnant.  ‘Oh, Mom, get your shoes on.  We need to go to the ER’.

This isn’t the congestive heart failure tummy.  This is not water retention.  We are waiting for X-rays, but if I had to make a guess, I’d say her bowel is twisted — again.  This poor woman.  This is exactly where we were a year ago.  Twisted bowel.  Surgery. Two weeks in hospital.  Complications.  And since December, she has been in out of the hospital with Afib and congestive heart failure.  She has lost 45 pounds in the last 5 months.

How much more can her body take?

How will this affect her dementia progression?

What am I saying?  Can she even survive another operation?

As she finally rests, I think how insignificant the decisions of the past few days have actually been.  Does it matter where she lives?  No it does not.

What matters today is that she just lives.

Yay for Mom!  She left on her golf outing this morning at about 7:45.  I think she putted on the green of the first three holes and just rode in the cart and observed her friends the rest of the day, however, she isn’t sure about the details;  she says maybe she only putted on one hole.  She went out with her golf buddies for lunch, and returned to the house at about 3:00.  She used the bathroom and hobbled to her chair where she crashed for two hours.   She has been reading the paper and watching the news for the last 2 hours, only wanted a bowl of cereal for supper, and now at 8 p.m., she is heading to bed.  I think she’ll sleep well tonight.

The retirement village tour has been canceled for the immediate future.  We need to figure out if Mom can live independently or if she needs assisted living.  She has several doctor appointments coming up, and we are hoping to glean some valuable info from the doctors.  I talked extensively to the Directors at the village today, and I think it’s time for a family meeting — with Mom included this time.   Tomorrow is the day.

We are going to use the “D” word.  We are going to be frank.  We are not going to argue or be unkind.  But we have been tip-toeing around this confusion dementia diagnosis long enough.  I’m not looking forward to it.  It will be a hard, heart-breaking meeting because we have to explain that she isn’t going back to her apartment.  We have a couple of options for her, but she won’t be a happy camper.   I don’t blame her.  It stinks.

The meeting with my siblings was productive.  We threw out 10 options for Mom’s care.  Although some of them were just flippant, like:  we can send her to her best friend’s house to live.  She loves her best.  Not really, but we were just trying to inject some humor into our conversation.

I think we came away with 2 viable options.  Either we get her into the nice retirement village that is relatively close or she stays here with me.  There really are no other choices.

Everyone was really excited about this village.  Mom would live independently, however the apartment is set up for seniors with extra care options for a little more money above the rent each month.  Sounds perfect.   I have an appointment to go see these homes on Wednesday morning.  If they indeed look suitable, we were going to present this option to Mom at the end of the week.

But today Mom is having a bad day.   Both strength and memory seem to have failed her today.   I had a day planned to visit a couple of local shops, lunch out, and then pick up some fresh flowers from the nursery before heading home.  All things that she can do and enjoy — no walker or “exercise” involved.  Shopping, lunch and flowers — sounds like a fun day to me.

Before we left the house, she asked me 5 different times where we were going.  (sigh)  I parked the car at the curb between the two shops I knew she would enjoy.  Maybe 20 steps to each one.  She struggled.  After those two stops, we headed to the cafe’ across the street.  Again, just a short distance, yet it was all she could do to get to the door.  It was exhausting for both of us.

After lunch, we decided to at least try the nursery as she could push the flower cart.   However, after the first few minutes, she opted to go back to the car to wait for me.

We did go get our nails done as she had 2 gift certificates that were about to expire (from Mother’s Day a year ago).   I decided that was a safe option as she only had to sit there.  Whew.

She has even decided she may not go to her golf outing tomorrow morning.  ‘I think I’ll just wait a week.  If I go, I’ll just want to play.’   She knows how much work today was for her and for me.  I wish I could see inside her head and know what she is thinking.

My sister called just minutes after we got home.  Mom said we got our hair cut and went out to lunch. (sigh)  She couldn’t remember anything else we’d done, although, later in the conversation, she did remember that I had gotten some flowers.

This was a discouraging day.  If I had only this day to judge whether she could live alone:  Hands down: no.

Hopefully, the tour at the retirement village will lend some light on our situation.  I have high hopes that I can get some guidance about Mom’s future.

She has asked me 4 times today when she gets to go home.   How long can I put her off before we tell her, ‘never’.  I can give her so much, yet I cannot give her the one thing she wants.   It’s so sad, and I just want to cry.

It’s early Sunday morning, and everyone is still asleep, but I am restless.   This is a day of decision for my Mom.  My brother, sisters and I are going to meet for supper and discuss Mom’s care.  She is determined she is going home.  We thought it best to brainstorm first with each other, and then sit down later with her and talk about the options.  My daughter is going to distract “Gramma” with an invitation to watch a movie.

This is the closest thing to a “date night” that my husband and I have had in months.

I have very mixed emotions about my mother (ha!  no surprise there.)  Yes, there has been a total disruption of my life since she came to live with us.  Every decision I make every day involves her.  Can she go with me?  Can she stay here alone?  Will she be able to sit that long?  Will she be able to stand that long?  Where are the restrooms?  Can someone come here to be with her while I slip away for a few hours?  My mom is at the top of the list every day.

However, there has been peace and comfort in this arrangement.  I know she is eating well.   I know she isn’t driving.  I can manage the congestive heart failure easier.  I know when she remembers.

And I know when her stories are a jumbled mess.

I am often amazed when I hear her talking on the phone to family and friends.  Her recollection of any given day can be totally accurate or it can be a combination of things she has done over the past week or two.  Does that matter?  I don’t know.

If she goes home, will she eat right?  No, I’m pretty certain she will not.  Does that matter?  The right answer to that is, yes of course, as it affects her health.  She has congestive heart failure — diet is crucial in managing it.  However, I think Mom would rather live the way she wants to live  — and be happy for whatever time that allows —  than change her ways and be miserable as she lives out her days.

If she goes home, can she organize her day?  Her dementia plays out in confusion and distraction.  She depends on me for everything right now.  But am I helping her or hurting her?  Would she be better if she had to do more herself?  I don’t know.

So we usually leave for church shortly after 9 am.  At 7:50, Mom still isn’t up, and I knock on her door, ‘Mom, are you going to church?  We’ll leave in an hour or so”.  I continue to get ready, but Mom doesn’t get up until 8:45.  Really?  Seriously?  My knee-jerk reaction is irritation with her.  How do I say this?  Church hasn’t ever been her favorite…  church isn’t something she looks forward …  Well, let’s go this route:  Church is something I look forward to each week.  Church is a place where I worship my God and see many of my friends each week.  It is important to me, and I was looking forward to going this morning.  So I am a little honked off that she couldn’t get up.  She has been up at 7:15 every day this week.

She will probably not sleep too late on Tuesday morning when her friend is expected at 8 a.m. to take her for their first golf outing of the season (she just plans to ride the cart and possibly putt a couple of holes).  I express my frustration to my husband.  (Yes, he sees the real, ugly me.)  And he replies, ‘she probably doesn’t even know it’s Sunday’.  Well, yes, there is that.   And even though every day this week, she has talked about going home on Saturday or Sunday, and counted down the days.  And even though we talked about going to church just before she went to bed, she may indeed not remember that it is Sunday.  Or she might.  I don’t know.

Do I go to church? Do I stay home with her?  Hard to believe this might be a day of decision when there is so much indecision.

The one – and only — time I’ve left her alone for 2 hours, she packed up everything she owns.  She had her suitcase full and her shoes in a bag.  The dresser was wiped clean, and all her personal jewelry, perfume and lipstick was packed in her purse.

So when in doubt?  Don’t.

I apologize to my husband for being cranky, and I change into some casual-stay-at-home clothes.  I grab another cup of coffee and walk into the living room to ask my mother, ‘would you like yogurt or toast with your coffee this morning?’

Home Care Physical Therapy released mom from the walker today.  If you’ve read my earlier posts, you know that Mom hates the walker.  She has complained about the walker.  She has rolled her eyes about using the walker.  And she has said she would not go out in public with the walker.  And yet this evening, she is still using the walker.   I’m not sure I will ever understand my mother.

She made plans with a friend to golf on Tuesday.  She told her that she expected to go home Saturday or Sunday.  So here we go…

Mom is getting stronger.  She is taking care of all her personal needs such as bathing and dressing.  She is capable of getting her own water, coffee and snacks, although, she much prefers for me to do that for her.   She hasn’t fixed her own meal since living here, and I know she wouldn’t fix much when living alone either.   I asked her this morning, ‘Mom, do you want breakfast before you get dressed or after?’  Her reply was, ‘oh just a cookie or two; something light’.    Just for the record, I have never fed her cookies for breakfast.  But still, if asked, that is her first choice.  Cookies for breakfast and lemon pie for lunch — no wonder she had gotten weak earlier this spring when she was living alone.

But her strength isn’t the issue.  It’s the dementia.  Now that I am closely tied to her daily life, I see the confusion.  My siblings see the confusion.  And now, her friends even see the confusion.  But Mom does not.  And to be fair, she probably is just as well as she was for the last six months she lived alone.  But should she have been living alone?  Probably not.  So how much dementia is too much dementia to live alone?  And who gets to decide?

My keys have been quiet for a couple of weeks.   “If you don’t have anything nice to say, then don’t say anything”.   I decided I best be quiet.  I am trying to balance being honest and transparent and yet not saying things that I’ll regret one day.

There is definitely a learning curve involved when your mother moves into your home.  There is a time to “push buttons” and time to “let it go”.  I have decided if some buttons need to be pushed, then let my siblings push them — I have to live with this woman!

We did hit our first rough patch about 10 days ago.  Mom got a little passive aggressive and sarcastic in her communications with me and my sister.   She was taking pot shots at me.   And under normal circumstances, when she is healthy,  that is not like Mom.  She may take pot shots at others, but she never criticizes her own kids or her grandkids.  Ever.  She is our biggest cheerleader.   I told myself that over and over, but still, it hurt.    I am not a crier, and my emotional state is usually well-hidden, but I was kind of a wreck by the end of the week.   Whew.  I need to get a grip — this may be a long and winding road, and we are only at the gate.

Thankfully, I was needed elsewhere for a few days (retrieving a college-age daughter from campus 700 miles south), so Mom was going to my brother’s home for a few days.  I think the timing was perfect as we both needed a little reprieve.

As the trip was going to take about three days, my husband suggested I take one of our nieces along with me.  She is in high school, and this college is on her list to visit.   I said, ‘what?  No, not this time.  No.  I don’t want to talk to anyone.  I don’t want to take care of anyone.  I don’t want worry about anyone.   Not this time”.

I took my time driving down, stopping at a couple of places of interest.  Before leaving, I had downloaded  an audiobook, and thoroughly enjoyed listening to that story.  I stopped early in the evening and sought out a nail salon to get a manicure.  Then I ordered a salad from Applebees and loved every bite in the quietness of my hotel room.  Refreshed, early the next morning, I drove over the mountain to finish the last trek onto campus.  After we loaded up her belongings and lunched with her fiance’, my daughter and I headed north.  We took our time coming home as well, finding a couple of shopping areas and staying another night at a Holiday Inn.  I was in no hurry to get home.

Mom must have needed a break just as much because she has come back into my home and settled down into a routine.  She still talks about going home — a lot, but at least she isn’t mad or mean about it.  She just wants to go home.  She says, ‘I just need to live my life’.   And I know she does, but I wonder if that life still exists.  I don’t think she can ever go home and live alone.  We’ll need to talk about this soon.  The lease in her apartment is up mid-summer.  Hard facts will have to faced, and decisions will need to be made.

Who gets to make those decisions?

Who has to make those decisions?