Mark Twain

"Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do ...
Explore. Dream. Discover." Mark Twain

Tuesday, April 8, 2014

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. 

The most important goal of all - walking.  My simple goal is to increase my daily step average each month.  
7112 average daily steps

7094  average daily steps

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.

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.  

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 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.  

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!

Monday, April 7, 2014

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.

Thursday, April 3, 2014

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.

Friday, March 21, 2014

Through My Caregiver Eyes - Hospitalization

Short note - she is hospitalized!

Mom's rash continued to grow and spread and generally make her miserable.  All efforts to treat seemed to fail.  Finally she was hospitalized last Tuesday with the intent that an Infectious Disease Physician take control of this condition and aggressive treatment started.

Carbuncles is the initial diagnosis.  IV antibiotics and a surgical lancing of one of the boils has been ordered.  She is on pain patches and morphine.  It has been a difficult time.

My days are now consumed with her care once again. I am with her from early morning until evening.  She is too weak to stand or even to adjust her position in bed.  She is too weak to feed herself.  Her pain medicine is a mercy but also a poison to her health.  Without the morphine she has bad pain, with the morphine she has some relief but sleeps the entire time which only continues to weakens her.  And even when she was healthy, she could not respond to questions of the doctors so I become her voice.

Although hospitalization is meant to focus and intensify the process of disease identification and treatment ... vigilance becomes the caregiver's main job.  Nurses are busy people.  They don't have time to meet every need.  They cannot note every change.  And they can't come when needed if the person can't remember to push the Nurse Button.  I become her hands.

And when ordered tests conflict with the current needs of the patient, you have to step in and say "no." Early in the admission mom's ability to void stopped.  A catheter was ordered - but not immediately done.  And then after a time transport arrived to take her for additional testing in the hospital - and I flipped.  The poor transport guy must have thought I was nuts when I said she wasn't going anywhere until her bladder was drained and I went to find the nurse.  I made her aware that everything - including testing would be halted until she put in mom's catheter.  She complied.  Mom's pain was reduced by half.

All these people mean well, but they only see their little part of the process.


My time is now not my own.  Blogging will cease for now.

If you are a praying person, I ask for your prayers.  Hospitalization, while sometimes necessary, often negatively impacts the patient who is 88 and can start a downward slide that cannot be controlled.

Saturday, March 8, 2014

Through My Caregiver Eyes - a quick update

It is amazing to me that mom has been relatively stable with no serious issues for over 2 years.  It shows what good professional monitoring can do in an excellent retirement community.  True, it isn't home, but at home mom was hospitalized 4 times in one year with many rehabilitations ... all ending in admission to Assisted Living ... so they must be doing something right that I wasn't doing!

The last few weeks, however, have been worrisome.  She developed a rash on her left leg that increased in size and intensity very very quickly - despite several medical interventions.  When I say it is intense, the center portion is like an open wound.  And the whole rash is extremely painful.  Last week another similar rash started to develop on her right leg.  By mid-week, there was a place on her back that appeared to be cooking up the same rash.

I started making noises with the medical staff about what I thought she needed a week ago - before the spread to her back.  This community stellar in many respects, but ... they are a bit slow to family observations and recommendations.  I understand that they deal with many families who think they know what is best.  No matter.  This lady is the only mother I will ever have ... and I have been proven correct with regards to her medical care many times.

I think, however, we are finally on the same page.

Yesterday my sister and I took mom off site to a dermatologist for a tissue biopsy - in an effort to clearly identify the problem and make sure the treatment is correct.  It was an exhausting and painful visit for her.  It was exhausting and painful for me too.

Now we wait! Unfortunately results aren't instant and cultures take time.  But at least I feel we are taking the right steps.

AND, thankfully I feel confident in the Dermatologist we visited.  I know she must report back to the medical staff at mom's Assisted Living, but when I asked if she would call me back directly with results as well, she quickly responded, "I will be calling you first to discuss treatment."

This doc is a "keeper."

Saturday, March 1, 2014

The Shawl

I started knitting in 1997.  In all those years not one project drove me as crazy as knitting this shawl did.  It was a challenge.  And when I got to the lace border (the one designed to go with this shawl), I finally caved.  I decided that the pattern provided was beyond my skill set and I picked something else.

This project taught me patience and perseverance ... qualities I thought I was generously endowed with ... but discovered were not sufficient to get to the end of this shawl ... it really did stretch my boundaries.

And so, here are the pictures of the shawl that I am pretty darn proud of ... and that snagged my interest in doing other lace shawls ... something that I thought was totally unbelievable just a few months ago.  I know another lace shawl is in my future.  I am hooked!!

These outside pictures show the true color of the yarn.

Same shawl but taken in doors one evening.  Amazing difference in color.

Draped over my daughter's arm the day the shawl came off the blocking board.

The cute model is my beautiful daughter.

Another option for how it can be worn.

Tuesday, February 18, 2014

Through My Caregiver Eyes - Are you paying attention?

It sometimes amazes me how much of life goes by unnoticed.

Oh ... I am not talking about the big stuff - big stuff is generally seen and sometimes promptly dismissed or forgotten.  But big stuff hits your personal radar - usually.

No, I am talking about the small, the inconsequential, the minor details that sometimes barely touch our consciousness.  The kind of little red flags that seem to grow slowly over the years, becoming common place and accepted ... and limiting.  

Here is an worrisome example in my mom's life and mine ...

Watching mom over the last 7 years, I realized the simple act of getting out of bed was getting not so simple for her.  In the final months at my home we had to install bed bars - not to protect her from falling - but to give her a hand hold for pulling herself up with her arms to get out of bed.  Now in assisted living, she has a bed strap that she grabs to help with rising or adjusting herself in bed.

Her torso muscles - those "core" muscles we hear so much about - aren't used for the function of rising out of bed anymore.  She uses her arms to do the work.  And last week, as I was sitting beside her - she in her recliner and reclined - she tried to get up but collapsed back.  She couldn't sit up.  She wanted me to lift her forward.  I reminded her she could adjust the recliner electronically with the touch of a button to help her sit up.  And she did.

None of this is news.  For her this is "normal" now.  Accepted. It didn't happen over night, however.  At some point in the past she must have noticed more of a struggle to do the simple action of rising from bed.  Or maybe not.  Maybe she wasn't paying attention.

But here is the "bone shivering" part of the story for me.

One morning about a month ago I was laying in bed and I started to sit up.  I promptly rolled back down. The first effort was a "fail."  On my second try, I was successful.  It took a bit of an effort and I didn't seem to remember that effort in the past.  

But as I sat on the side of the bed I thought, "Not good.  Not good at all."  Visions of my mother floated through my head.

I vainly tried to explain away the episode to myself as I looked in the bathroom mirror and brushed my teeth that morning.  Years ago I was instructed by a physical therapist to always roll on my side and push my torso up with my arms when getting out of bed.  And I dutifully have done that for about 10 years to help with back pain.

But what has that small action resulted in today?  What will getting out of bed look like in 10 or 15 years?  Will there be a strap hanging off the bed post to help pull me up?

Since that morning I added some core exercises to my routine.  At first those exercises just K*I*L*L*E*D me!!  Many unrelated muscles from my neck down to my knees tried to help with those core exercises to spare my abs from working.  Those lazy suckers just didn't want to work at all!  But I am nothing if not stubborn!

Recently the exercises seem easier to do.  There is an improvement in some things that abs are supposed to help with ... functions that were slipping and I hadn't noticed yet.   And now I can get out of bed without the use of my arms (unless the back muscles are cranky.)

I am not going for a flat belly or a "rack" ...  the usual goal of most doing core exercises.  I just want to get out of bed without help when I am 85.

We all share an aging journey.  But each of us moves through these years differently.  I am aiming for a different journey than my mom.  And the only way I can do that is if I am paying attention - to her and to me.