Dementia? Yes, but best day ever!

Ok, two posts in one day, but I just can’t wait to write.  My mom had 2 doctor appointments today, and earlier I had talked with my sister briefly about how the day had gone.  My sister didn’t even want to talk about the actual appointments, she just wanted to talk about the personal strides in Mom she saw.   After talking with her, I hung up the phone, and called my Mom.  I wanted some of that.

She was energetic on the phone and talkative as she offered all kinds of info.  “The doctors couldn’t find anything wrong with me, so I guess I’m ok”.  “We went out to lunch, and were gone all day.”  “Just got back in time for my dinner”.    “There was a new woman admitted today, and they asked me to talk to her”.   “They asked me if I could sew; so I spent 3 hours sewing yesterday”.    What???  Wait?  What?    Who are you, and what did you do with my mother?  (I know I’ve said that before in a post, but hey, seriously, we are trying to figure out who this woman is).

So, yes indeed, a new resident was moving into her facility today.  The woman — and her daughter — were very distraught.  The mother was evidently crying, and when the Facility Director saw Mom walking in the hallway, she asked her to come talk with them.  Wow, bold move, Miss Facility Director!   But I guess Mom told her frankly that in the beginning she was very very angry.  And stayed that way for about a week.  But then things got better and, “I’m ok now”.    I just started crying when Mom told me that story.   Mom told me that she has good days and bad days, but she’s weighed it out in her head, and its ok.  “I probably do more things and am busier here than I was at my old apartment”.  Wow.

And yes, she did do some sewing for three hours yesterday.  Mom is an expert seamstress.  She had an upholstery shop in our home; also did some tailoring.  That facility found a gem.  I’m sure they will keep her busy with all sorts of projects now that they know what she can do.   They are evidently having a luau this weekend, and had Mom sew tablecloths, napkins, etc. to get ready.

And Bingo.  Mom is loving bingo.  Evidently they win play money.  Mom loves a competition.  And every few days, they set up a market with toiletries, etc., and the winners can spend their money on those items.  It’s a win win situation.

I am amazed.

Everything Mom told me lined up exactly with what my sister had said.

Mom did tell me some things 3 times, (smile), but I’m ok with that.   Yes I am.  Glad you’re back, Mom.  I’ve missed you.

Best day ever.

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Maybe That’s Why She’s Quiet… I hate Dementia

Mom continues to gain strength, and has actually gained around 15 pounds as near as I can tell.   Over the last several weeks, when asked about her weight, Mom would reply that she weighed 112 or 127 or 119 — all within the same conversation!  My sister and I were concerned because Mom’s weight is relevant due to her Congestive Heart Failure.  My sis has since bought a small dry erase marker board which sits right by the bathroom scale.  Mom’s daily journal seems to confirm the 127, give or take a pound each day.

However, it is complicated because now that the Hyperthyroidism is under control, of course, she is gaining weight.  Her appetite is back, and she is eating well again.   I try not to take offense to “the eating well again” comment when my sister says it.  Hey!  I was feeding her well when she lived here.   But, seriously, 85% of the time Mom was with me, she was a very sick woman.  And with the thyroid out of control, it didn’t seem to matter what she ate, she still lost weight.  I haven’t opened any of Mom’s cupboards in the new apartment, but my sister says she tends to gravitate to the candy aisle whenever they are out shopping.  That, too, could be responsible for a few extra pounds.  She also has dessert choices at every meal in the dining room — she does love her some lemon pie!  That’s okay, eat whatever you want, Mom.   At 84, some habits are just not going to change.

Since I posted last, I have seen Mom a couple of times.  She has been fairly reserved and quiet.  She will talk when asked direct questions, but she rarely begins any conversation herself.  I think that is the biggest personality change I see.  She doesn’t seem mad anymore, just not herself.

I hate dementia.  What an awful disease.  There she is right in front of me.   But where is SHE really?  Like many other daughters around me, I have cried myself sick over my mother.  (The hour and half drive home serves me well that way.)  Grieving…

Our family worked like crazy over the last year to get Mom healthy again.  We fought the doctors at every turn when they gave up.  And we were right when we said,  ‘something isn’t right; you are missing something’.   After eight months, the doctors landed on the correct diagnosis, and here we are two and half months later, Mom is certainly healthier — she has gained back strength, stamina, and weight.  She looks good.  But, I can’t help but think all that havoc on her body accelerated the dementia.  She is a different woman than she was — even 9 months ago.  Sure, we saw the signs, and we knew things we a bit amiss, but the rate at which her mind has stopped playing nicely is alarming to me.  And it grieves me.

I think it grieves her too.

Does she hear the repetition?  I know she hears the repeating stories in some of her fellow residents, and it drives her crazy.  (smile)  Yes, that does make all of us kind of snicker.  Oh, Mom…

Does she know she is confused?

I think she knows.  And it probably scares her death.

Maybe that’s why she’s quiet.  The less she talks the less she reveals to us … and to herself.

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Assisted Living Adjustments. This. This. And This.

call-mom-on-phone-means-talk-to-mother-100250803Funny how all of her kids have a different kind of interaction with Mom.  My sister who lives 600 miles away has always had a great rapport with her over the phone.  So, lucky for her, that relationship can just keep on keeping on.   I am not much of a phone talker so that has never been how Mom and I have communicated.  The phone calls we make have always consisted of details that need to be shared.  This. This. And This.  Ok, I love you, bye.  We have always lived within “meeting for lunch” distance.  We talk face to face.

Mom now lives an hour and half away.  This lunchtime meeting is more challenging so, of course, phone calls need to be made.  But after last week’s visit, I’ve been a little reluctant to call Mom.  Everyone else seemed to have a good report after being with her, but my encounter was less than “good”.  I decided to give her a little more time to adjust…maybe a lot of time.

However, these are the new developments this week:

Adjustment #1:  my sister stopped in to see Mom yesterday, but Mom wasn’t in her apartment.  After checking at the front desk, Sis discovered that Mom went with a bus group to a local restaurant for lunch.  When they got back, Mom went to play bingo with some of the gals.   My sister found her in the Rec Room, smiling and having a good time.  Wow.  Bingo.

Adjustment #2:  Mom called me this morning.  She needs some more pants.  She told me the colors and size to buy.  I know that call sounds trivial, but this was a “normal” kind of phone call from Mom.  She sounded good.  She sounded like Mom.  It was a short call: This. This.  And This.

But I’ll take it.

‘Ok, Mom,   yes…yes…  how about you…   yes…  I’ll get them for you…  ok, I love you, bye-bye’.

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She Wasn’t Perfect, But I Want My Mother Back

I saw my Mom today.  She has been in the assisted living apartment for about 2 and half weeks.  This is the first time I’ve visited her.  We have put 1800 miles on the car since I saw her last.  Our youngest daughter went off for her final semester of college 650 miles south of our home.   After we got her situated (on the 4th floor!!), we took another few days to ourselves, cargo van and all.

Two and half weeks seems like a long time.

I had high expectations.  After a rough start to last week (details I won’t go into), Mom seem to settle, and  my “boots on the ground” sister was giving positive reports.  ‘Mom wants decorative pillows for her bed’.  ‘Mom wants pictures for her walls’.  ‘Mom would like a full-length mirror’.

All good signs of “nesting”?

I took her picture frames with me.  A box-full of family photos.   I thought she would be excited to have faces to put with stories as nurses and techs walk in and out of her apartment.  She seemed pretty ambivalent.

About me.  About the pictures.  About everything.  Sigh

Resigned.

That is how I would describe my mother.  Not nesting.  Not settling in.  Not happy.

Just resigned.

I ate lunch with her — offered to take her out, but she opted to eat in the dining room.   She only said the necessary words at lunch — ordered her dinner; answered direct questions.  I attempted to make small talk with her and “her silly friends” as she had described them earlier.  seriously??

We then went to a few stores, looking for a door “ornament” for outside her apartment.  She also bought a hammer, screwdriver, pliers, and nails.  Oops.  I might hear about that from my siblings.  But what was I suppose to do?  I couldn’t hardly grab them out of her hands.   ‘Mom, what do you need pliers for?’  ‘I don’t know, but I may need them’.   She has always been a do-it-yourself kind of woman.  But pliers?  screwdriver?   Oh well…..

We got back to her apartment in time to catch a few minutes of the live entertainment for the afternoon.  A man in his early 60s, playing the piano and crooning some tunes.  He was okay, but after 20 minutes, Mom looked at me and said, ‘let’s go’.   Crept in 30 minutes late and left 10 minutes early.  Not a great impression on her fellow residents.  But again, oh well…

I took my leave at that point.  I didn’t see any point in going back up to her apartment.  I hugged her and said, ‘I love you, Mom’.  I got a hug and an I love you back, but as I got in my car and drove away, I was a mess.

Who was that woman?  That was not my mother.  And that makes me very sad.

Is she mad?  Depressed?  Angry?  Grieving?

I do believe those are the same questions I asked a few weeks back.  I just don’t know.

But I do know, the woman I spent the day with is not the mother I know.    The mother, if truth be told, who use to drive me crazy on many levels.   Aren’t all mother/daughter relationships layered and complex??

It’s not even been 3 weeks; it’s still very early.  It will take time.

This disease is so complicated.

I have cried all afternoon.  I am grieving.  I want my mother back.

Breathe in.  Breathe out.  Pray.

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Very Inspiring Blogger Award Nomination — Paying It Forward

I was surprised this morning by a comment on my blog.  frangipani nominated me for an award, the Very Inspiring Blogger Award.   What a nice surprise first thing in the morning!

Seriously, finding a community of caregivers that post about their experiences with their aging parents is encouraging.  No two dementia patients are alike.  Our journeys are all so different — yet the same.  I glean inspiration and strength from their posts.  Thank you for sharing.

You can read about frangipani’s experience with caring for her Mom at:  Reflections on Dementia, Caregiving and Life in General.   I enjoy her writing and insight into dementia.  Even though she lives in Singapore, on the other side of my world, and our cultures vary dramatically, we share a common bond — our mothers are slowly leaving us through disease.

I want to thank her for reading, commenting and nominating my blog.

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This is an award that we pay forward — honoring the bloggers whom we follow and who inspire us. Here are the rules:

Thank and link to the amazing person who nominated you.
List the rules and display the award.
Share seven facts about yourself.
Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
Proudly display the award logo on your blog and follow the blogger who nominated you.

I am now suppose to share 7 facts about myself…

1.  I live in the USA

2.  I live in a rural town where a large Amish community resides.  Horse and buggies and bicycles are their mode of transportation.

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3.  We have not always lived in the country.  Seven years ago, my husband made a career change.  After 35 years as a Certified Public Accountant, he decided to become a farmer.  So much of my writing (My Days Well-Lived) has been inspired by that move.

4.  I cannot remember much of my childhood.  I have very few memories and that makes me sad.  That is why I blog.

5.  I rely on God for strength, patience, kindness and wisdom.   I am thankful that He is patient with me as I am often a slow learner.

6.  I come from a large family, and I have lots of support on this journey with my Mom.

7.  I think this journey is far from over.

Blogs that I would like to nominate… not necessarily about dementia, but inspiring just the same:

Reflections on the Journey

Hearing God’s Voice

The Little Moments

Help! Aging Parents!

Caring For the Caregiver

Dealing With Dementia

The View From Here

Me, My Mum, and Alzheimers

As Our Parents Age

 

 

 

 

My Mother May Never Speak To Me Again

Roughest two weeks of my life.  Mom just continued in her anger.  We are not sure exactly what is going on.  Is it a medicine side-effect?  Is she just plain mad at us for not allowing her to go home?  Is it dementia?  So hard to know.   I have never seen my mother exhibit anger like this toward her children.  It is heart-breaking.

Last Tuesday evening, she was scheduled to go out to eat with my niece and her family.  At about 3:00, Mom walked into my kitchen and demanded to go home.  “Home” of course, does not even exist anymore, but Mom does not remember that.   I calmly reminded her that she had dinner plans.  She then stated she would be going home from dinner then:  ‘I am not coming back!’  Sigh   I did not answer her; no reason to pick a fight.  But shortly after that conversation, she began to pack up every single thing she owns.  She folded clothes into laundry baskets and put shoes into grocery bags.  It didn’t take her long, and before I could actually think of a plan B, she had emptied every drawer and closet.

She was practically giddy for the last 30 minutes while we waited for her dinner date.  Wow — such a personality change.  Hmm, so she can control it.  In the midst of all this activity, I had received texts from my siblings that Mom would stay the night with my brother (niece’s dad) and then head to my sister’s for a few days.  She left happy as a lark and I was bawling like a baby.   She thought she was going home, and I knew she was headed to yet another kid’s home.  Seemed like the ultimate betrayal.

A little side story from over the weekend:  For those of you who have read previous posts, you know my Mom lives to golf.  That was her ultimate health goal: To be able to get back on the golf course.   My sister’s husband is a golfer, and since Mom wasn’t mad at him, he offered to take her golfing.  They played nine holes.  Nine holes!!  And she beat him.  Are you kidding me?  I know my mother is a strong woman — and a stubborn woman — but she had something to prove that day.  But, wow.  Nine holes!   Thank goodness my bro-in-law is a good sport!

Mom was angry for the four days she was at my sister’s home — barely talking to my sister.  It is extremely challenging for anyone to live in that kind of environment.  Enough said about that.  We can talk about “why” forever, and still never know.  We’ll just blame the disease and give Mom the benefit of the doubt.  Who is this woman?  How many times have I said that during this journey?

A week has passed since she left my home.  And in that time, we have moved Mom into an Assisted Living apartment 3 blocks from my sister’s home.  My sister had already laid all the ground work for the facility; Mom’s insistence on leaving my home only accelerated the move.  Sunday was the hardest day of my life.  I may write more about that some time, but for now the emotions are too fresh, and raw, and too close to the surface to blog about it.  Some day, maybe.

The apartment is in an amazing facility.  There is much offered and people actually want to live there.  It is not “home” yet.  And Mom is still very mad at her children.  However, she is talking and engaging with the staff.  Not so much with residents yet (baby steps are okay).  My sister found out she signed up for a water-color class.  Seriously?  Wow.  So we are 2 days into this dramatic move, and I see a glimmer of hope.

However, I’m not sure my mother will ever talk to me again.   When I kissed her good-bye on Sunday, her last words to me were, ‘I didn’t think you’d ever do this to me’.

I hope she finds her place.  I hope she continues to get healthy.  I hope she thrives.  And I hope she forgives me.

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Just a Pat on the Hand

I was not at my best yesterday.  Four hours of sleep and the stress of getting Mom’s apartment ready to pack evidently were not a good combination.  And unfortunately, I let my guard down.

Mom and I had our first big confrontation yesterday.  We were both upset and mad and didn’t speak the rest of the evening.  I take the blame for the argument.  I am not the one who is sick and tired.  I am not the one with a dementia diagnosis.

She went to bed first — without eating any supper.  I followed shortly after.  Lying in bed, I knew I would never sleep.  What am I doing?   Over the monitor, I could hear Mom’s restlessness as well.

I slipped into the kitchen, took a plate from the cupboard.   And with a few hardy snacks, I tiptoed into her bedroom.   I knelt by her bed, ‘Mom, I’m sorry I got mad.  I love you.  I brought you a few snacks’.

She was drowsy, but as she patted my hand, she said, ‘I love you too.  It’s okay.  But I’m healing…I’m healing’.   I don’t think I ever remember my mother patting my hand.  Emotions run deep.  Why do mother/daughter relationships have to be so complicated?

I kissed her cheek and gave her a hug then headed back to my own bed.  Big deep breath.

Lord, forgive me.  I blew it.  I cannot control anyone else.  I can only change my behavior — and only with Your help.  May I be kinder and gentler.  And may I have patience.

I pray for contentment and peace for Mom.  This is so hard on her.   Help us know what to do.  We just don’t know what to do…