Recovery

So here I am again, almost one month later.

Breaking a blog-silence.

After the recent "mom-illness-hospitalization-rehab-nursing home" episode, I have come to realize a few things about myself.

#1 - I don't know myself as well as I think I do. 

The rest of my story just falls like an avalanche out of #1!

I am not as resilient as I think I am or as I used to be.  Each set back in mom's situation is a set back for me personally and each of my set backs take longer to dig out of.  Sounds like a mom-related behavior!  Seniors taking care of seniors. Exhausting.

I still can "dive into" a mom-related crisis with the energy and the focus of someone half my age, but the personal price that is paid after the crisis gets longer and longer to recover from.  I can't seem to "dive out" with the same energy and focus and take back my own priorities without a long hard fight with myself.

Here I am 3 months later finally getting re-connected with my own needs ... but it seems like such an effort!

But I am trying ... really, really trying!  

Two weeks ago I prepared a blog post and pictures, but never posted it!  Does that still count?

I gained an all-time-high of body mass ... yes, too much weight!  I am back to watching my food intake and have thankfully settled back to my previous "all time high of body mass."  *sigh* Does that count?

I started walking and exercising but have missed the last week and a half.  Does the start of walking count?

I have started calling home improvement vendors to replace carpeting and flooring (long, long, dreadfully long overdue.)  But I dread the total upheaval that this kind of improvement will cause in my personal space.  No contracts signed yet, but will the effort of talking to someone about making improvements actually count?

I am knitting on a shawl for myself that I really don't care for - I bought the kits over 10 years ago.  Too bad I didn't make the shawl then when I loved the colors. No matter.  It came from deep stash and I thought I would come around when I got into it.  I didn't! I am almost finished so I can use it this fall in the house.  Certainly that finish object should count?

My other crafting lives are in another temporary limbo - that always seems to happen when I am in recovery.  Nothing there will count. (But ... I love walking into my yarn room and admiring my newly  assembled loom and stand with the newly started weaving project on it.  That counts for something.)

I returned to knitting group three weeks ago and enjoyed every moment, but felt like I was stealing time from other more worthy endeavors - like sitting on the couch and doing nothing!  Ok, now we all can agree that knitting group does count!!!

On the surface of my life everything looks under control.  But under the surface ... I am still struggling.  And I dread the thought that any gains I make will go up in smoke when mom takes her next downward step in living.

This "Recovery" stuff is hard hard work!

Through My Caregiver Eyes - Light

So yesterday my post seemed only to see the shadows of mom's mind.  Today I witnessed some of the light.  I thought I would share.

It was a beautiful morning when I arrived at the Nursing Home, and she was happy to see me.  She seemed more alert than yesterday.

She asked for ice cream, but what she really wanted was a glass of water with ice.  Swallowing fluids is generally difficult now and all liquid are thickened for her.  Icy cold water was what she wanted without the thickening so I got her exactly that.  She enjoys the simple things in life now ... and a large glass of water with ice sipped slowly through a straw was do-able for her today.

But I did notice that picking words and completing sentences was hard today (ice cream for ice water is a prime example.)

We had a perfect day so we went out the front of the community and sat in the sun.   She remained alert enjoying the warmth of the sun.  So different from yesterday.  Yet not so different as communication was a struggle.

Soon a priest emerged from the entrance.  He recognized us and stopped to talk with mom.  It was a bit hard for mom, but this priest is a regular visitor and very skilled at interacting with all ranges of cognitive ability.

He was from New York and so was mom, so we chatted about that for a few minutes.

At one point, he directed a question to mom.  "So, Mrs. Mesavage, how old are you?"  Mom continued to smile at him but did not respond.  I thought maybe she didn't hear the question.  I regularly repeat questions aimed at mom with a slightly raised voice - making sure she can see my mouth.  I began to repeat the priest's question.

Before I could get passed the second word, mom turned to the priest and said,

"Can I lie?"

What a hoot!!

Not only was she following the conversation, not only did she have an answer ... a spark of her personality and humor emerged in a blinding flash of light for me.  I felt totally washed in it.  She was connected for that small period of time.  She continued to give the priest a dazzling smile waiting for his answer.  He laughed right out loud.  "Sure, why not!" he said.

She responded, "I am 81."

81???

She is actually 88 - and maybe she couldn't remember her actual age, but my guess is that she did know for those few moments!  Of course, she probably didn't want too big a lie to answer for in the next life so she just shaved her age a bit.  :-)  And seriously, if the priest said she could lie, should she need to answer for anything at all???

Too funny!

Now if it was me, and I was going to lie to a priest, I would have made it a whopper!

"I am 29!!!"

Thank God for the spots of light.  It makes her not seem so far away!

Through My Caregiver Eyes - Shadows

Today is Mother's Day and I would be remiss if I didn't recognize my mother on this day.  Her story has been so much a part of my blog and my life for years.

Mom struggling with her card.
I needed to open the envelope for her.

Today was a day for sun shine and flowers and cookies and a card!  Today was a day I had hoped the  shadows of her brain might clear a bit so she could enjoy this day.  But it was not to be.  She was happy to see me as I got a small smile on my arrival.  She briefly enjoyed the flowers I brought and she munched on a red sprinkled sugar cookie cut in the shape of a heart. But recognition of the holiday seemed lost on her.

We went outside to enjoy the sun shine - spending time in the center's gazebo is one of the things she likes to do.  But she promptly fell asleep.  Sleep seems to be her constant companion.  I have come to accept this.  It is enough that we spend time together.

Time to sit and think fills my visits.  My thoughts were interrupted by another family nearby.  They were sitting together with a grandmother in a wheel chair, and I could overhear them encouraging her.  She needed to work hard in PT and to eat all her meals and to not spend all her time in bed.  If she wanted to go home she needed to do these things ... otherwise she could not go home.

Such sadness I felt.  How many countless times I had that very same conversation with mom over our years together.  I tried to block out their voices.  Better to stay focused on the knitting I brought ... no sense in borrowing sadness when I had plenty of my own.

Shadows of the gazebo.

I looked up and saw the shadows of the gazebo about our heads.  How very much like the shadows of mom's brain that gazebo is - small spots of light and darkness.  When mom was admitted to the nursing home 6 weeks ago there were far more bright spots in her brain.  Lately the darkness seems to be gaining ground.

So on this Mother's Day I honor the woman my mother is!  She didn't have the easiest life but she raised her two daughters to be productive and caring members of society.  She held together her small  dysfunctional family when others might have given up.  She lived a long life with many satisfying and loved filled moments.  She might not remember any of this, but I do.

She does not suffer now.  She lives a calm life not disturbed by the loss of possessions and experiences.  For her Mother's Day is just like any other day.  It is as if her losses have been exhausted now - there is nothing more left for her to lose.

The Mother's Day card sat unopened on her lap.  She fell asleep while looking at the cover of the card.  I guess the warmth of the sun put her to sleep ... or maybe another bright spot is shrinking into shadow.

You are loved on this Mother's Day, mom.  

Comments Moderation

Just stopping in to let you know I have enabled "Comments Moderation" on this blog.  Unfortunately I have starting getting spam in the last month.  So I have decided to place a filter on comments - shouldn't be a hinderance to you - but it is an easier way for me to delete these unwanted visitors.

If the people who like to cause this mischief focused their energies into something positive, maybe the world would be a better place!

And a short note to regular readers:  mom is doing better.  It is unknown if she will "graduate" from the nursing home, but for now she has recovered much of her own personality.

A better update will follow.

Coping Strategies

Personal goals go out the window at a moment's notice when you are a care giver.

But I haven't lost sight of them and now they are no longer optional goals ... some of them are coping strategies. 

WALKING

The most important goal of all - walking.  My simple goal is to increase my daily step average each month.  

January

7112 average daily steps

February

7094  average daily steps

March

8502 average daily steps

April - first 8 days

9293 average daily steps

It is remarkable that March showed improvement.  I guess I was putting in a lot of miles the early part of March because once mom was hospitalized, I was only walking from my car to the hospital and back.  Oh, and let's not forget the steps I took from her bed side to the bathroom or the cafeteria and back.  But the real goal is the daily average - not individual day totals.

Now I am walking - sometimes twice a day - because I can't sleep.  And I am just so darn tired all the time.  Walking during the day is the only thing that helps me get through the night.  So this is Coping Strategy #1.  Walk, walk, and walk some more.  It does help, truly.

A special thanks to my Fitbit pedometer and its ability to track my steps when I really could care less, and automatically sync with the website capturing my stats until I am ready to look at them.  The only thing I need to do is keep the battery charged.

KNITTING

I had one knitting goal - to finish my daughter's shawl.  Thankfully I did that before mom's hospitalization.  Ironically my crafting life stalls when I am upset or worried.  I know that is the exact opposite of many folks who find escape in the act of knitting during tough times.  Not me. But I am knitting a little each day.  And when I do force myself to knit those few rows each day - I do feel better afterwards.  

CLEANING

This was a pretty simple goal - clean two closets.  It did not happen, and now the rest of the house is in a desperate state of dirty!  Usually when I am upset I become a cleaning machine!  Not this time.  My energy levels are very very low, so I am not going to fret about a dirty house.  

BLOG

Blog more ... was my goal.  Blogging has always helped me - especially when things have been difficult with mom.  The story of my mom and care giving continues.  I did blog a bit more.  But I don't want this blog to become only my care giving journey - so I will try to broaden my focus going forward.  

EXERCISE

Do more strength and stretching exercises.  This was the goal.  While totally worthwhile, it has been really hard right now.  No time, no energy, no immediate feedback - like walking gives - to make the effort right now possible.  I haven't lost my desire.  I'll be back. 

My April Goals!

Walk more!

Sleep better!

Settle mom in her new environment!

Through My Caregiver Eyes - Unfamiliar Faces

As I walk into the nursing center every day to visit mom ... (and it has been about 10 days now) ... I can never predict how the visit will go.  The face of my mother seems little different each day since the hospitalization.

Sometimes it is her contented face I see - happy to see me and other residents.  She gives a brilliant smile to everyone who addresses her.  At other times it is her sleepy face - asleep in her wheel chair for most of the visit.  She expresses no interest in her surroundings, no desire to eat, and only wants to nap.

Today another face greeted me.  She had rolled herself up to the nursing station and appeared to be looking around.  She recognized me as I approached, but the look was that of inquiry.  "Where were you?"  "I am ready to go home now."  "I think we need to go back home today."  "It is time go to see Walter."  (Walter is her brother who lives in New York.  She hasn't seen him for longer than I can remember.)

The focus today was "home."  It entered most of our conversations.  "Home" sometimes means her room - but not today.  "Home" might have been her assisted living bedroom or it might even have been my "home."  Regardless - the only home she has now is her nursing home room - and that definitely was not where she wanted to go today.

She was restless and irritable as the visit progressed.  At one point she stopped and looked around asking for me or my sister.  She wanted to know if we were still here.  I was sitting right in front of her.  She asked about home again.  She understood that she could not stand now without assistance from 2 people - but she couldn't make the logical leap to understand that her limitations made this environment the only choice for now.

It was a hard day.

And so I suspect I am seeing the many one-dimensional faces of advancing dementia -  unfamiliar faces that are rising to the surface as we discover what mom's new normal is.  And it is very apparent that she has both a new lower norm physically and mentally.

I miss the familiar face of the woman who raised me.  She was interested in her surroundings and the activities of her friends and family.  She was consistently friendly even when she was having a bad day.  She'd occasionally ask if she could go home - but she followed the logic that my house had too many steps - that her wheel chair would not work there - and she was safer in Assisted Living.    She had a multi-dimensional personality - even as she continued to decline.

I miss that woman more than I can express.

I fear that familiar face will not show itself again.

Another loss.

The losses never seem to end.

But I am thankful she is still in this life with me - no matter what face she is showing.  I know our days together grow few.  I will love all those unfamiliar faces that rise to the surface now - even the difficult ones ...

... because someday I might not even have those.

Through My Caregiver Eyes - Nursing Home

How to begin.

My mom was never one to express preferences in life.  She usually went along with life - adjusting to whatever was put in her path without much resistance.

With one exception!

She never wanted to be placed in a nursing home.

Today she sits in a nursing home - because her physical and mental abilities do no permit her to continue in an assisted living environment.  She is getting physical and occupational and speech therapies ... and it is hoped that this caring environment will help repair the damage to her dementia that that hospitalization caused.

It is hoped.

But as I look back over the last 7 or 8 years of being there while she aged - it breaks my heart to know she is now in a nursing home.

I console myself with the knowledge that this nursing home, Brooke Grove Rehabilitation and Skill Nursing Center, is an excellent facility.  This retirement community is number 1 in the county and in the top 5 in our state.  I have been there with her through several rehabilitations 2 years ago and during this admission as well.  The staff is very stable - with many of them remembering her from other times.  And since her hospital discharge she has improved markedly because the environment is very much less stressful.

When I am feeling very down, I remind myself of those facts.

But how do I overshadow some of the memories from the hospital ...

One memory is burned in my brain.  It brings tears to my eyes even now.  After one especially difficult and frightening hospital procedure my sister and I returned to the room and found mom quietly very upset - trembling.  We stood on either side of her bed - trying to be there for her.  I don't recall if she was aware of our presence, but she pulled the covers up and began performing the sign of the cross on her person.  She silently repeated the sign of the cross over and over again.

In her mind there was no other help for her except God.

I felt helpless.

My own belief in God is less traditional than mom's and certainly not as intense.  But in that moment I desperately hoped that the spirit of God was standing by her with us.  She deserved at least that much.

Today her medical record has an order ... no ambulence transports, no hospitalizations.

Finally I have found the silver lining of dementia  ...  hope that dementia has lost that memory in her brain.

Now I must find a way to cope with that memory in my brain.