Q - Quality of Senior Medical Care - an Opinion

🎵 Happy Birthday to me. 🎉

🎠 Happy Birthday to me. 🎡

🎼  Happy Birthday, dear me! 🎶

🎉  Happy Birthday, to me. 🎊

Finally, actually 72 years of age - today at 8:45 pm.  I remember my 30th birthday.  Mom called to wish me a Happy Birthday.  She said she was calling at the exact time I was born 30 years ago. 8:45 pm!  I laughed and said that ... no, mom, I was born at 8:45 am ... she had missed it by 12 hours.   Mom quickly corrected me saying, no, I was born at 8:45 pm.   She was there and aware of the time - AND this was before I could tell time!!!  8:45 PM

Crap!  Here I was commiserating ALL DAY LONG that I was 30 years old, when in fact I was only 29 until just that moment.  I had been cheated out of 12 hours of being 29!!!

Today is my 72nd birthday and I elect to take those 12 hours of being 29 TODAY!!

 And so ... as you read this post, just know

 I am the oldest looking 29 year old you will ever see!
(at least until 8:45 pm - and then I will be the youngest looking 72 year old you will see!!
haha!)

*****

Ok, back to the blog challenge!  A more serious topic!

Quality of Senior Medical Care

Quality of Senior Medical Care is a serious concern of mine.  Medical care is pretty good in my area - I have no problem with the quality of medical care generally.  But during the last 8 years with mom, I learned that the medical care system is designed to keep you alive - at all costs - without consideration for the quality of living - Period, The End.

It can sometimes forget that living is more than just a beating heart!

More times than I can count, I needed to intercept / interpret / evaluate the need for care for mom against what that care would do to her in the aftermath.  Let's take an example:

Mom was diagnosed with a rather large aneurysm on her descending aorta from her heart.  I agree, that is a very serious life threatening condition.  She was in the hospital, however, for one of her many UTIs (Urinary Track Infections), that are SO common in the elderly (and yes they do hospitalize the elderly at times for this condition.)  I can't remember how they discovered this aneurysm in her chest, when her complaint centered in her belly - but they did. When the doctor told us of the aneurysm, he said something like ... "Really, this is serious, typically we wouldn't discharge her with this aneurysm and would insist on surgery to fix this.  It is a big, big, big aneurysm.  What did you think?" ... I looked at him.  Was he kidding??  What do I think??  So I told him. "There would be no surgery.  My mother's health was not good (many many other issues).  If she didn't die on the operating table, she would most certainly be bed ridden for the rest of her life, because the enforced weeks of bed rest would totally sap any little strength she had now.  She would never recover to her current disabled status."  I remember his eyes got big.  I am sure he noted in the chart that patient's daughter refused treatment for a life threatening condition.  He was off the hook.

The important point here is that the elderly need an advocate with them to guide the decisions of a hospitalization - ideally 24/7 advocacy, - because care in a hospital is 24/7.  Mom was suffering mildly from her dementia at the time of this conversation.  She could converse normally to the unfamiliar ear.  If I wasn't there, I don't know how that conversation would have played out.  Would she say yes?  Would she say no?  The bottom line is that doctors want to 'fix' things - they don't want to release a patient with a life-threatening condition no matter what their age.  I get that.  But sometimes you have to balance quality of life over longevity of life.  High quality medical care can keep you going for a very long time - but it can also hurt you if not managed in a humane and reasonable way.

And just so you know the full story, mom died 4 years later from dementia - not from that aneurysm which did not show on her death certificate ... or from her kidney failure or her Cardiac Heart Failure (CHF) or the painful boils on her legs or from the arthritis throughout her body - it was her brain disease, dementia, that was first on her death certificate that killed her.  Surgery I believe would have certainly taken her from this earth earlier.

Was I right or was I wrong!  I guess it is a matter of opinion.  But all the decisions I made on my mom's behalf are decisions I can live with - to this very day.  I believe I gave her more life - not less - and the quality of her life was surely better than trapped in a bed.

Mom was in the hospital many many times.   I was with her always.  Sometimes I would walk down the hallway to the cafeteria and I would see other very very old folks in beds - many without anyone to speak for them.  I always felt badly for those folks.  Always.

I have a special soft spot in my heart for only 3 things in life:

children, animals and the elderly!

Everyone else can fend for themselves!

The Caregiver takes off her mantle ...

Not much time has passed since my mom passing.  Looking over that short period I find that I am a little surprised.

I miss her, but I am not mourning her!  And I feel there is a big difference between those two words.

Maybe I should explain.

I heard all the well meaning sympathies - all offered by people who care for me and shared their best advice from their own experiences and expectations.

Take your time with recovering ...

Only time will help this process ...

Don't try to do too much ...

I am worried for you because she was so much a part of your life ...

Those daily little reminders of her life will be difficult to get passed ...

And these statements are all generally true, but how can I explain not mourning my mother now.

Today on my walk I realized that my mourning began long before she died.

Thinking back I mourned her in a million small ways over the last 10 years.  The first tug on my heart happened when I realized she was really no longer completely viable living independently.  Moving her into my home 8 years ago made me happier - she was safer - but I remember sadness too knowing she needed this kind of help.  In 2011 her frequent hospitalizations and in-house rehabs created another jarring realization. Yes, her mind was failing, but her body was too.  In December 2011  I remember standing by my kitchen sink crying like she had already died - she was leaving my home and being admitted into Assisted Living.  Watching her leave me mentally and physically this last year was a terribly mournful time for me.    I mourned at each and every decline for too many years.

So I am not in a state of mourning today.  It sounds almost sacrilegious to say that.  But for me, my time at my mom's side was like one long goodbye.  And as I lost pieces of her through the years, I mourned and made my peace with those losses every step of the way.

I miss her.  I am not mourning her.  I think she would be happier about that.

I think each individual goes through the process of losing a loved one differently.  I had years and years of little goodbyes and periods of sadness and mourning.  There is nothing left now to mourn.

***

I have two last memories to share - and then I am moving on in a different direction for the blog.

About 4 days before mom died, she had a few wakeful periods.  She was not eating or drinking much.  She was not speaking.  I knew she was dying.  I think she knew too.  That morning when I came into her room I bent down to say good morning and kiss her face - something I did every time I visited.  This time, however, she slowly lifted her arm and put it around my head as I kissed her.  Her message was simple - I am saying goodbye.  I will remember that embrace for the rest of my life.  That same day my sister arrived and mom did exactly the same thing again.  A simple action and yet so meaningful.

My last memory caught me by surprise.  I expected her actual death to be hard.  I was prepared.  I was not prepared for the last moments at her grave site.  The priest had performed the last blessing and had left.  It was a cold and rainy day - too dismal to linger.  The small gathering was breaking up.  At that moment, I couldn't seem to leave.  I finally walked to the end of her casket and placed my hand on it trying hard to understand this emotion.  I think the realization that I was finally no longer needed even for the shell of her body had finally hit me.  I turned quickly and left.

I left my caregiver mantle at her grave site.  I didn't need it any more.

***

Next time I post ... and there will be a next time ... I will focus on what the "new" me is doing!  Hopefully you will stick around for that.

Through My Caregiver Eyes: And thus we part

This is the last entry in a continuing series called 

Through My Caregiver Eyes.  

The full story of 8 years as my mother's caregiver 

can be found under the label "Through My Caregiver Eyes."

 (Label Section to the right of my blog posts.)  

My mom was 88 years old at her death.

The rocky path from independence to living with me, then assisted living

and finally nursing home care is documented in this series.  

While our journey together is peppered with joy-filled moments,

 it tells of many losses for her and sadness for me. 

For anyone who is a first line caregiver of a loved one, 

you may see yourself in my story.

A last letter to my mom.

Dear Mom,

How I miss your sweet smile.

Every day I think about you and wonder how you are doing.  Every day I think it is time for a visit with you and then remind myself, you are no longer on this earth.

My time at your side began 8 years ago when you moved into my home.  Neither of us fully understood how difficult this last journey would be.  Thankfully we didn't dwell on what could happen.  Life is a process and we just kept moving forward through it.

You were there during my growing years when living in a dysfunctional family was very hard - and I was there during your declining years when increasing age took so much away from your joy of living.  There is no one I have shared more of life's struggles with than you.  Through it all you showed how to keep moving forward through the hard stuff while still enjoying the simple pleasures.  I feel so much in your debt.

I am changed by this whole experience.  How remarkable is it that my personal plans and desires could be so dramatically altered by taking this journey with you.  Nothing I could have imagined for myself would have equaled the the importance of what I learned at your side.   The real diamonds of life are time with family and giving of yourself when it would be easier to walk away.  I wasn't born knowing that stuff - learned it from caring for you.  

Oh, the last 8 years were not without our personal disagreements.  Those bumps in the road were rocky at times.  But it never derailed you and me.  I lived the last 8 years knowing this day would come when you would be gone.  I worried that I would look back and wonder ... could I have done more or something different.  My motto became - Have no regrets!  I have looked back.  There was nothing left undone or unsaid between us.  I loved you, mom, without reservation or conditions.  I accepted your strengths and weaknesses and learned from them.  I met every challenge and pushed every boundary on your behalf.  No regrets.  I am now at peace.

I know you would be happy to know I am fine today.  Sometimes missing you suddenly catches me unawares and the tears begin to fall, but that is normal.  You have moved on and so must I.

Thus we part company in this life.

You are loved, mom.  You still hold a place in my heart that no one will ever dislodge.  You were there when I took my first breath at birth and I was there for your last breath in death. I hope when I take my last breath, you will be there with that sweet smile to help me find my way.

Love you always,
Elaine
Retired Knitter

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.

An empty nest ... finally.

I know this blog is supposed to be focused on my "next 20 years."  But my thoughts have been focused on the last 20 years a lot as late.  And those years have been filled with changes that staggers my mind as I review it.

Now I am facing the newest change - an empty nest - the literal description of one's life when all the kids have left home for good.  I have eagerly looked forward to this time and now that it is here I feel a bit numb to the prospect.

For me ... my empty nest describes more than just the kids growing up and moving out.  In the last 20 years the scope of life that kept my nest full was broad.  Most of it has pealed away.

The late 90's were filled with my husband's grandmother, and then his mother, during the last years of their lives.  My husband and I were laid off from jobs during this time ... both at the same time and both from long time employers.  My two adult kids both left and returned home more than once during those years.  They are now flying through life with their "adult wings."  My daughter recently purchased her own property ... a kind of adult passage.  My son married officially stepping out of our "nest" to build his own.  I lost a level of intimacy and trust with a close person or two - a sad reality, and I may never return to that blissful naive state again.  My husband was diagnosed with a degenerative eye condition that cannot be cured and will lead to blindness - changing both our lives in ways we never could have anticipated.  My mom lived with me for 5 years and the heart break of moving her out of my home and into Assisted Living pretty much ate up the last of my personal care giving reserves.  And this month my son and daughter-in-law who had temporarily lived with me for 10 months, moved into their new home - taking my grand-dogs with them.  There are still a few "remnants" left in my role as "nest maintainer" ... I am still overseer of mom's care as she slowly drifts out of this life in assisted living.  But the "nest" I tended so carefully is pretty vacant now.

There is one glaring reality.  I did not really prepare for this state of empty nest.

The last few days I found myself cleaning, cleaning, cleaning.  Cleaning has always been a coping mechanism when I am upset, or unsure or just numb.  I am not upset - as all of these changes are the way of life.  But I feel numb ...  open and empty.  I worry about when the house is clean.  Then what!

So I need to focus more on me.  I have been pretty good at looking the other way - but my being says now it is time to focus on you.  I have talked about that in the past - but the hours of the day were always filled with the needs and desires of all those things that filled my nest.

Yesterday I went for a walk.  It was one of those "first day" of a walking routine that I hoped to build.  I have a long, long history of "first days.".  But lately I have noticed my legs have various aches, my knees are giving me problems and my energy levels are pretty low.

I have seen this before.  I have seen it in mom!  Fear sent me out the door on that walk - and now that my nest is pretty empty, fear is as good a motivator as anything.

I have also signed up for a strength training class starting in November.  I believe a Yoga class will also become part of my routine.  And these knees may need a professional evaluation because I don't want them to become an "excuse" for not moving.  I have seen that as well - in mom!

Fear!  Whatever works!

Finally, blogging as been a struggle lately.  That is actually a good sign.  My blog kept me sane during some pretty tough and unhappy years, but now it feels like just another thing on my "To Do" list.  The need is just not there to write and vent and chatter on.  I considered stopping the blog - thought about it many times over the last 2 months - but I could never "do the deed" and say goodbye.  Guess I was not ready to end this ... after so many other endings.

So here I am blathering on to you! Guess blogging will be part of my empty nest after all.

Thanks for taking the time to read this.  I'll be back again - just not sure when.  My blog will join so many other blogs that I follow where posts crop up now and again, but never goes away!

Cheers!

Who are you ... really!

So who are you .... really!

I mean really,

 underneath,
inside,

where no one sees but you!

The real you!

It is the kind of question that some people find difficult.  They spend their lives being someone else because -

• they don't like who they really are,
• or they were formed by parents to be one way and find breaking those habits too hard,
• or they don't know who they are because they are so busy just "fitting in."

One blogger I follow, Chatty Crone, addressed that question in a recent posting called  Thursday Thoughts.  As I read her post I thought - wow, I could have written some of this!  I wonder how many people can relate to that feeling after reading her words ... or after reading my words.

So I decided to answer that question about myself - because I am not the same person I used to be just a short time ago.  Please check out Chatty Crone's posting to see if it rings any bells for you.

My first 60 years can be summed up in one word: conform.  Raised in the 50's (a conforming period) and the 60's (a non conforming period), it was a confusing and changing time.  But by the 60s, I strove to fit in and to not challenge. Some of it was in deference to my mom and the dysfunctional family we lived in.  I wasn't into causing her any more headaches.  Some of it was because I am (was?) an easy going person.  I was also raised within a religious tradition that was big into conforming.  If you didn't conform, if you questioned, there was guilt.

Self esteem, independent thinking, trusting your instincts, questioning, self direction ... were not ideas that held any meaning for me growing up.  I grew into adult hood, selected my professional path from the narrow range available to women at the time (secretarial, nursing or teaching) and married the weekend after my college graduation.  I followed the path that was expected of me.

It wasn't all bad.  Luckily my selection of a husband was good.  We are in our 43rd year of marriage and we have 2 wonderful kids.  I wouldn't change any of that.  But so many other decisions over the years were tempered and limited by my learned response to conform.

When I look back on that point in my life, I despair at my lack of vision and independence.

When I was 60 the transition began.  Mom moved into my home when I was 59.  The years between 60 and 64 were increasingly difficult years:  growing care giving responsibilities, constantly increasing demands, changing roles, and, at times, unsupportive and challenging attitudes from unexpected places.

Those years changed me.  It was like a baptism by fire. I learned to speak my mind, to question authority, to take definitive action, and most importantly, listen to my gut rather than the opposing chatter around me!  I learned to set aside previously important relationships.  I learned to put myself first, finally.  I learned to question even the most basic truths of my religious upbringing without guilt.   I am not saying any of this is easy.  Sixty years of habits are hard to overcome.  But the change is now solidly established within me.  There is a different me!

For my mom, I still do the same things she has always expected.  For her and her alone, I can set this "new me" aside as it would only cause her stress ... old age is hard enough without expecting her to adjust to a "different" daughter.

And so Chatty Crone opened a flood of realization.  I wonder if my care giving years had never happened, would I still be cruising through my life living the expectations of others and seeking to conform.

Just like the zebra in the picture above, I look the same on the outside, but on the inside - I am facing in a very different direction.

Note:  I think my butt is smaller than the zebra's.  At least I hope so.  :-)

(Gosh, is that a cultural conformity that I need to shed?  Most certainly!)

Through My Care Giver Eyes - Survivors

A chapter is closed on my care giving journey and another one is opening.

Mom has successfully moved into Assisted Living. She thinks of her new space as "home." Staff and residents all report that she is a happy and pleasant person. She seems to enjoy her life, her activities, and her visitors.

She is settled.

I am settled as well. Her successful adjustment made my own adjustment so much easier. It is another little gift my mom gave to me - adjusting well so that I could finally let go.

And so I am closing out this thread of care giving blog postings with a reflection on Survivors.

Thinking back over the last 5 1/2 years and even further back, I can see that Mom and I are both survivors.

Mom has survived and recovered from so much over the course of her life. Knowing that she experienced a difficult marriage for about 24 years, sensing her low self esteem and confidence at the time of my father's death, raising 2 daughters as well as she could - those early challenges created the mental fortitude of a survivor even before I became her caregiver.

The last aging years of illness, disabilities and difficult recoveries revealed much about her. Losses continued to slip away - physical mementos of a life actively lived, declining health, reduced independence, and the loss of memories - those losses run very deep.

Loss in Assisted Living can also be seen. Although I visit her about 4 times a week and she is more actively engaged in social experiences, she has less regular contact with her family. The risks in this elder setting are "out of sight - out of mind" for her family.

And let's not forget ... she has survived me! She has survived the reality of having a daughter become a care giver.

For myself, five years of care giving and dealing with the many extraneous stressors that surrounded that role - changed who I am, how I approach life, and, sadly, hardened my soul a bit.

I've learned a lot about myself in this passage. I have learned

• to essentially listen to my own conscious - and shut out the voices of others who would do it different and who saw my path as somehow flawed. To know that my own experiences and decisions have validity and that there is no one right way to do anything.
• to accept the natural losses of the very aged, to not impose my on agenda on the natural aging decline that always wins in the end. Yes, keeping fit and active are important goals for quality of life, but once the path of life is chosen by the very old, accepting that decision is an honorable and respectful choice.
• to personally let go and change direction when all other options are exhausted.
• to go from daughter to caregiver, and then back again to daughter.
• to accept I am not always a kind and considerate person - something I valued in myself for as long as I can remember.
• to accept the losses I have personally experienced - losses that are best left unsaid.

I suspect am not done learning either.

So this chapter closes for me now. The primary care giver has receded. I am once again a daughter. Our relationship has flourished with friendship. I see her regularly and we talk by phone. It is almost like it was before she moved into my house. Almost ... except that the litany of losses still remain for both of us, but so do the survivors!

And, Mom, you may be more "out of sight" than before, but you are seldom "out of mind" for me. You are much loved in my heart!

Retired Knitter

Daughter

New Empty Nester Fills Her Day

So it occurred to me a few days ago that I finally reached the status of an "empty nester."

Although my "children" left home many years ago, I always seemed to have others residing with me ... either returning children for short periods or another relative. And I have always welcomed those new residents. But now my kids are independent and other possible residents have thinned out. It is just my husband and I.

I guess my husband and I will get a chance to see if we can still make it together! :-) Actually the stresses of the last year have tested this 42 year old marriage in ways I never imagined ... and we are still together. I doubt our lives now will result in anything different. A comfort!

Of course, mom is still very much a part of my day. I see her almost daily for about 2 hours. Some visits are difficult with moodiness and anger - emotions unusual for her. Some visits, like today, are pretty good. She seemed happy to see me, we had a chance to visit privately, and we joined other residents for a game later in the morning. She will be riding out to see Christmas Lights with others from Brooke Grove this evening. She probably is looking forward to that.

I am busy sorting through the "caves of possessions" in my home for both mom and myself in an effort to clean out and thin out "stuff". Mom has boxes in her closets that she never unpacked 5 years ago. The time is right to go through the boxes - get rid of stuff she can't use and probably doesn't remember - and bring items to her that she might enjoy. My own possessions continue to "reproduce" at an alarming rate. Sorting through our stuff has been an ongoing activity this year (especially when I was upset - which was often), and shedding stuff will continue. The Den in my basement is so full, it should be considered unsafe. Now mostly what is down there is yarn and fiber - so a falling injury is unlikely, but a smothering event is possible. :-)

And yesterday I got a piece of mail I have been expecting. My Medicare Card from the Department of Health and Human Services. Isn't it wonderful that the Federal Government thought to remind me of my advancing age!!! Oh well, 2012 is the year when I turn 65. I guess it is time.

I am behind on Christmas stuff, but in my new mode of simplifying and stepping out from under the weight of traditions, I am not stressed by the impending holiday. For Christmas this year, we will take mom out for lunch on Christmas Eve. Our "big", but small dinner on Christmas Eve will be our family celebration with gift giving after dinner. Maybe my kids will plan to spend the night like last year. That was great fun. Of course, my son and his fiancee must balance the needs of 2 families now. Christmas morning I will return to take mom to mass. Christmas Day dinner will be left overs. I think this Christmas will work out just fine.

And for a change, I am looking at things that I can add back into my life instead of what I did this year - dropping things. Knitting and blogging have returned. I think about my loom with a newly started project on it from last May. Weaving has passed my mind frequently. I am thinking about walking again and maybe returning to Tai Chi in the spring. And when I get up in the morning I am so very stiff. It reminds me that Yoga was a part of my life at one time and it made a huge difference in how I felt. Yes, I can see a number of things in my future. In fact, it amazes me how many things I stopped in 2011.

My personal sadness is lifting a bit as I see mom beginning to adjust to her new home. Today the nursing assistant said that mom is a very pleasant and a happy person. So despite the occasional sad face she shows me, I know she is putting down roots.

My empty nest is fairly quiet now, but my brain is buzzing with possibilities.

Through My Caregiver's Eyes - Christmas At Brooke Grove

Today was Christmas Family Day at Brooke Grove - Sandy Spring Assisted Living.

It is a good time to introduce you to this wonderful community.

Sandy Spring Assisted Living is part of the Brooke Grove Retirement Community. Set on 220 wooded acers, this lovely place includes Independent Living, Assisted Living, Skilled Nursing and Rehab. It is a continuing care retirement community. This means that as mother's level of care changes, she will remain "under their umbrella." Since I have seen the excellent care the nursing home residents receive, it is a comfort to know she is in a good place for the rest of her years.

The staff at both rehab and assisted living are excellent. In the short week she has been there, I have seen some of the sensitivity shown to her. Mom resisted some personal hygiene assistance and the assistant honored her wishes and backed off. But they continue to strive to gain her trust. Of course, they are strangers to mom. It will take time for her to feel comfortable with these new faces. But I know she will eventually. She had bonded with the rehab staff. On our last day there were genuine hugs all around. They were sorry to see her go ... and mom felt the same emotion.

One large improvement is the social opportunities available to her. On her second day she had a hand massage - something her old arthritic fingers really enjoyed. She attended a music and hot chocolate social, and met with a small group of residents and the chaplain for a talk. There is always something to do if you want to participate.

Today the holiday festivities at Brooke Grove are in full swing. Families are invited to attend a celebration with their loved one. There was live music and food. Mom made her way to the dessert table for her "second dessert." I think she really enjoyed it.

It was nice to meet some of the family members of other residents. It is not like home but today it felt just as festive.

Of course, tonight I am thinking again about her, wondering what she is doing. By 9:00 pm, she is probably in bed and maybe asleep. I can't help but wish she was asleep upstairs in her bedroom in my home. I know I shouldn't torture my self with these thoughts, but the nights are the hardest time for me. I know time is the only really healer.

Thank you all for you wonderful comments to my post yesterday. Each one made me tear up a bit. I am really trying very hard to look forward and see all the positives. And there are tons of positives. But there is also 5 years of care giving history I carry with me. It is going to take me a bit of time to adjust to my new role. I'll get there. I am a survivor.

But I am wearing a few "band aids" now on my heart.

Hello? Is anyone out there still?

I sure hope so.

I have missed my blog home and my blog friends. I have missed writing. I feel like I have been un-anchored and set adrift. I feel like my previous life - my life before mom - is back and I don't feel comfortable with that new reality.

Mom went into Assisted Living 5 days ago. After 4+ weeks of sub acute rehab, it was determined that she could not safely return home. She could not get up the 20 steps she needed to climb to get into my house and she could not be left alone ever again. Although hearing that determination was hard, it was not surprising. I could see that she was not progressing as quickly as before. Her strength was still serious limited. Physical Therapy said that she had "plateaued" in her progress, and as a result must be released from therapy.

And so we worked to find a good place for her to live, one where I could rest easy that she was being taken well care of, and that she would have a social network to keep her occupied. Brooke Grove was the final choice ... the same community that provided her rehab. The setting, the staffing and the quality of attention to detail are outstanding in this organization. We were very lucky that she was accepted into this Assisted Living setting. Pictures and stories will still filter through my blog because I am still her regular daily companion, if not her primary caregiver.

But ...

I miss her more than you can ever know. The nights are the worst for me. I shed tears every night for what we have lost. I know she is sitting in her recliner watching TV in her new room ... just as we did together almost every night in my living room. But we are apart now and it weighs very heavy on my heart. I visit almost every day. She is angry at times, and she has a right to be angry. Her life has changed so much. And I am sad beyond understanding, and I have a right to be sad because this was not what I wanted. But our lives are changing and we both must adjust.

Tomorrow is the Holiday Family Party at her Assisted Living and I will have my camera handy. I will share our new lives with you. But please know that despite the smiling faces in the pictures, there is an internal struggle for us all.

Gosh ... I sure do hope someone is still out there!

A hard post to write

What to say ...

Today is 3 weeks since her admission into rehab. In many ways she is less than she was, and yet she continues to improve in small ways. Maybe I see the improvements because I look for each little step forward. Maybe I want her to improve more than she wants to improve.

Physical therapy says that they will be discharging her by the end of November. But the discharge will include the recommendation that she has 24 hour assistance/monitoring. This translates to admission into Assisted Living or to an aide in our home for a minimum of 12 hours each day.

An aide in the home is not an option for us. Our townhouse is small. My husband is uncomfortable with the idea and I am not wild about it either. But my main concern is for my husband. After 5 years of living with his mother-in-law in sometimes difficult circumstances, I cannot ignore the line in the line in the sand that he has indicated. He also has expressed concern for the physical and emotional toll all this has taken on me to this point.

But what about mom ... After 3 weeks in rehab I can see that she is ceasing to try, to achieve, to remain connected to her surrounds. She sleeps a lot. She appears angry at times.

But most importantly she doesn't understand that she can no longer do for herself. She can no longer make the smallest common sense decisions for herself.

When she is awake she appears unhappy and no longer takes joy in the presence of family. Some of this is fatigue. Some of this is discouragement that she is not home. Maybe we are dealing with some depression as well. But without her corporation and desire to do the work to get stronger, there is no way to physically bring her back home.

I greatly fear that she can no longer live at home safely.

How will I ever be able to give her that news!

Sadness, Joy and Struggle

My, how quickly the time passes.

I returned from a quick trip to Florida to attend a viewing of my uncle who died this month.

The trip was filled with sadness and joy.

The loss of this favorite uncle was hard to accept. Yes, he lived a long and wonderful life. But letting go of loved relationship that helped make you the person you are is very difficult and filled with sadness. There was joy in putting my arms around my dear aunt, giving her a hug from my mom and one from me. Her last care giving years for my uncle took a large toll on her. Her work was done. Now she needs to build a life of her own. I would imagine that task looks like an insurmountable mountain after 57 years of marriage. There was also joy in catching up with my cousins on this side of the family. They also filled many of the memories of my early growing years. Visiting with them and their families was wonderful.

I called mom everyday I was gone. I tried to keep connected during the days when she would have no visitors.

But when I saw her on Sunday she appeared somewhat down and a bit restless. Maybe the understanding of her brother-in-laws death had finally been absorbed. Maybe she is struggling with the facts of her limitations. But her desire to just "go home" seems to be growing. It is hard to make her understand that she can't just be released ... that she has to be able to do some simple things - like getting out of chair unassisted and walking with a walker unassisted.

It is like saying I want to be able to run 5 miles this afternoon ... without doing the necessary months of work necessary to achieve that goal. I wonder if she would understand that analogy.

She completed 2 weeks of rehab and her doctor said probably 4 to 6 weeks were necessary. It is going to be a very long 4 to 6 weeks, I fear.

So I am back home and back to daily visits with mom. Blogging time continues to be hard to snatch.

I'll be back but it is hard to know when.

Briefly ...

Rehab for mom is going as well as can be expected. I am happy with the place and mom is happy with the place but she would be happier home. She is still in a wheel chair, but I can tell she is getting stronger.

My days this week seem to be mostly on the road. Now in addition to my other normal trips, I include a 2-3 hour visit with mom. The trip out to her rehab is lovely, but it take 20-25 minutes each way. Last week I visited mom every day, making sure her adjustment was going smoothly. This week I planned to visit it most days - but skip one or two.

That was what I planned. But come the end of the week I will miss seeing her for 3 days in a row.

I got a call this morning that my Uncle (my most favorite Uncle) had died in Florida. Today has been very hard. I couldn't seem to restrain my tears. So many fond memories from my youth of visits to my Aunt and Uncle's house flooded my brain today. And with each memory, tears of sorrow at his passing.

This Uncle was married to my mom's sister. They would have celebrated 57 years of marriage tomorrow! So much sadness.

The viewing is in Florida at the end of the week. Since mom is safely housed in rehab, my sister and I will travel to Florida for the viewing.

So the week has been hard on a few levels. I am bone tired and emotionally drained.

I hope this thunder cloud that persists in following me this year passes on soon.

I just need a break.

***

Blogging will be sparse for awhile. Time has suddenly become pretty tight this week.

Bracing Myself

Mom is already (after only 2 days in rehab)

trying to predict when she can come home.

She has determined that next weekend should be good.

Still wheel chair bound, she seems totally blind to her physical limitations

and the challenge this home presents to someone in a wheel chair.

Suggestions and reminders that her stay will be longer

seem to fall in deaf ears.

I am bracing myself for the depression, the anger, the disappointment.

Even though she is not in my home now,

she fills my brain with worry.

This will be a very difficult period.

Through My Care Giver Eyes - One Step Forward, Two Steps Back

Just a short update

Forward and Back

Backward - she fell

Forward - she appeared OK initially

Backward - she wasn't OK - and getting worse steadily

Forward - x-ray was negative - no breaks or fractures

Forward - no emergency room or hospital stay

Backward - unable to rise from chair or walk without pain - needs constant monitoring

Backward - almost fell in the middle of the night from her bed

Backward - hurt my back - not badly but makes it hard to assist her with the lifting stuff

Forward - decision made - she must go back into sub acute rehab

Backward - I am now sleeping on the floor outside her room at night

Forward - busy weekend with company - she was happy

Backward - she never leaves her chair except to go to the bathroom or to go to bed

Backward - getting weaker by the moment - you can see it happening each day

Forward - got her into my first choice rehab facility into a private room- a Cadillac of an institution

Backward - must wait 4 days before she can be admitted - room available then

Backward - must limp along as we are doing now for 4 days

Backward - she is sad because she has to leave the house

Backward - her pain continues, her weakness grows visibly every day

Backward - my back continues to stiffen

Backward - must miss my knitting group today - small backward step really compared to all we are dealing with ... but they keep me from total isolation ... they are my sanity group ... they are meeting right this minute and I am now sad because I am not there.

Backward - two more nights of sleeping on the floor - hope my back holds out

Backward - it is now 9:40 am and she is still in bed - will she be bed ridden by Thursday? is she depressed?

The trends are definitely downward.

But the die is cast.

She must go into rehab so we can all take back our lives.

Forward - I am resolute! This is the right step to take. What will be, will be. I will change this downward trend even if it is by force of my will alone!

I will.

Through My Care Giver Eyes - Roller Coasters

I don't really like roller coasters. They make me vomit, and I hate to vomit.

But elder care giving is a roller coaster ride - the only difference there is no vomiting, only sleep deprivation.

If you read Thursday's post you would know that on that day I was choking and mom was falling. I recovered quickly. Mom did not.

Friday we took an ambulance ride to radiology to confirm that she did not have any breaks or fractures. Great news. Based on a stat read of the films she was able to go home instead of the hospital. Woo Hoo!!! Happy me!

Of course I should have been a little more observant of the situation on the way to radiology. It took the medical transport men (2 big guys) 40 minutes to get mom from her den to my first floor (maybe 30 feet). That should have been the first clue that she was not too good. As the guys were passing by me in my front yard with mom strapped on the gurney (finally) and heading to the the ambulance, mom says to me with a poisonous look, "I wish they were putting me in a wooden box." Nice. :-(

I reminded her in front of total strangers that only God could put her in a wooden box and that she needed to adjust her attitude a bit to make it easier on the people who were taking care of her while she was on this earth. And I had to say it loudly because her hearing aids weren't working too well. As they all passed by, one of the transport guys gave me a thumbs up and said "good one" under his breath! I think God made him say that just to give me a little boost! :-)

That was Friday.

Since she fell I have been sleeping nearby. Thursday night I slept in her den adjacent to her bedroom. I told her I would be there and she should call if she wanted to get out of bed. She never called me when she got up to urinate. In the morning I was upset and reminded her she needed to call me so I could help her. The Thursday night passed without problems. I assumed the same for Friday night.

Friday night she called out at 2:00 am (good). I leaped off the air mattress and turned the corner to find her hanging from the bed rails by her hands, legs bent, feet inches from the floor - unwilling to put weight on her legs because of the pain. I ran over to her, put my arms under her 155 pound body and lifted her dead weight onto the bed. I have a slight frame and weigh 140 pounds. We both were panting with the fear and effort. I am still not sure how I did that. My back hasn't been the same since then.

And then, standing by the side of the bed, the anger set in. I was TOTALLY and BLINDING angry at her for not calling me to help her get out of bed, and I was even more angry at myself for letting things get to this level. Since mom's fall she has been unable to raise herself from a chair and unable to walk - all due to muscle and or ligament injury. There were no broken bones, but tissue injury can be just as hard to deal with.

Once she was safely back in bed, I sat in her den - wide awake and filled with adrenalin. I came to the conclusion that she was officially beyond my ability to cope, and I was angry that I hadn't seen it before. I was up until 4:30 am that night sorting out my feelings.

I sent an email to the doctor asking her to return and assess her mobility (or lack of mobility). And after talking things over with my family, we decided that she needed to be placed in rehab again.

The doctor suggest 4 to 6 weeks in rehab. So that is where we are heading this week.

Until she is admitted into sub acute rehab, I am now sleeping on the floor in the hall outside her bedroom where I can see her. Attached to her bed rail is a coke can with coins. She can shake that can if she needs help, but if that fails (and it will) I will also know if she is trying to get out of bed on her own by the noise.

And what do you think she asked me this evening while sitting placidly in her chair?

"Do you think we can go to Mass tomorrow morning?"

*sigh*

This care giver life is a roller coaster. I hate roller coasters.

I think I am going to go vomit now!!

:-)

Retired Knitter

Care Giver and Daughter

PS - postings will be episodic this week. A lot needs to be done to get mom settled where she can get well. I'll be back!

PPS - you may also remember that my dear Maxima, Maxine, was failing. We needed to get another car pronto if we wanted to be mobile ourselves. We did, thanks to my dearest daughter who took care of her Grandmother for 6 hours on Saturday. But that is another post!

Can you top this?

It was one of those days.

Bright, sunny, crisp, cool and fall-ish. Perfect really.

I knew it couldn't last.

I had 4 things to do today. Piece of cake.

1. Food shop
2. Get mom out for her flu shot.
3. Get the title of the Maxima from the bank - we are car shopping.
4. Go pick up Milo in Bethesda.

Grocery shopping went well enough. My husband and I have always food shopped together all 42 years. Mom was eating breakfast when we left. She was feeling pretty good today. She planned to clean up the dishes and get dressed while we were gone.

Arriving home the first problem was discovered. As I walked in the door, I saw mom's feet on the floor - not in a standing position either. She had fallen and had sat on the floor for 40 minutes in our absence. We got her upright. She seemed fine. She walked very slowly to the bathroom and then went upstairs to get dressed. But I decided we didn't need to go for the flu shot today. I called her doctor, cancelled the appointment and the doctor promised to visit the house by tomorrow just to check her out and give her the flu shot.

When will I ever learn. Appearances are deceiving in elder care ... but I am skipping forward too fast.

So the next thing on the agenda for today was the title of the car. I headed for the bank. As I walked into the bank lobby a very nice attendant asked if they could help me. I opened my mouth to speak and the partially chewed nut in my mouth slipped into my wind pipe. I began to violently cough, to gag ... my breathing was difficult. People raced to my side, offered me tissues, water, lead me to a chair, I kept coughing. I tried to take a breath and it sounded thin and ragged. I couldn't fill my lungs with air.

It was kind of an out of body experience.

I remember thinking, "maybe I should be panicky, boy that inhalation sounds bad, gosh I can't seem to to fill my lungs". They asked if I wanted them to call 911 Emergency. I shook my head no, but couldn't say anything. Seconds later a bank manager said in my ear (while I am coughing, tears running down my face, gagging), "Emergency is coming. I just wanted you to know." They pulled up, brought the gurney into the lobby. Other thoughts popped in my head, "Damn, if they take me to the hospital and my car is in this parking lot, how will I get to Milo," ... don't forget my agenda!! :-)

By the time Emergency came I could tell that I had managed to cough up the offending nut. Fluid was still streaming from every orifice of my head, coughing/gagging was still going on, but my breath was returning. I still couldn't speak, but I could fill my lungs (and then try to cough one of them out onto the rug), but still!!

Once I began to improve, I improved quickly. I signed a release saying I refused to go to the hospital. I was fine.

And I was.

So I got the car title and tried to slink out of the lobby after thanking the bank manager. And I drove out to Bethesda to get Milo.

Upon returning home, I discovered mom couldn't walk. She said on a scale of 1 to 10 - with 10 being the worst pain ever - her pain when putting weight on her right leg was a 10. Damn!!!

I called the doctor again. This day was defiantly not one of my better ones!

Now it is 10:45 pm. I sit in my mom's den waiting to hear if she needs help getting out of bed to urinate. I am dead tired. She is struggling with pain, but she has a pain patch on to help. It probably will be a difficult night, but ...

We are home ... for now. Tomorrow will start with a 6:45 am visit from the doctor, maybe a trip by ambulance to radiology, maybe a trip to the ER ... but, for now, we are home.

I am glad!

I am breathing pretty good, too! :-)

Through My Care Giver Eyes - Isolation

There are a few emotions related to care giving that I never anticipated. And some of these emotions have changed who I am as a person.

One is social isolation.

The short version is this: as the elderly person's scope narrows, the care giver's scope can also narrow.

As I mentioned previously, it is not uncommon to find the social connections, hobbies, physical abilities and health of the elderly narrow resulting in a very home bound life. Sometimes keeping up socially is "just too much trouble" for the elderly. And if this happens it can impact the care giver as well.

I have been a social person most of my life. Projecting my life into my retirement ... I anticipated many things that would keep me outside the home. I was never one to gain energy from being at home or time alone.

For example, here are activities I could joyfully predict would fill my life with if there were no constraints.

Tai Chi

Knitting Groups (I attend only one - there are three.)

Book Discussion Groups

Exercise - walking, Curves, Yoga

Visiting friends

Art classes at the local community college

Day trips

Vacations and Travel

Cat and Dog Shows

Crafts and Craft Shows

Volunteer activities at local animal shelters or wild life center

Shopping

Light hiking

Dog park visits with my grand babies

Beach trips with friends

Movies

Exhibits - live in the Washington Baltimore corridor - there is a lot to do

If you examine this partial list carefully, most take place outside the home.

My reality now is that being "around the house" is necessary if you want to know what is going on and to assist with certain tasks. Being "around" is what Mom seems to need as well. When I am gone, she "forgets" where I am, she frets, she waits, she worries ...

So I have tried to find ways to develop pastimes and hobbies that keep me at home, but keep me isolated. They all tended to be the kinds of activities that would appeal to a hermit, not a social butterfly.

My activities look alot like this ...

Knitting, weaving, spinning

Blogging

Ipad games

Pod Casts

Reading - Audio books

TV

Dog sitting

House keeping - Decluttering

Inviting friends to our house

I enjoy these all activities, but the list is much shorter, and it is more solitary. I have managed to hold onto my Tuesday morning knitting group time away from the house. But knitting group is a single social event in a great waste land of solitary activities.

Despite everything I have said to this point, I am NEVER really alone. Mom, my husband, my kids, my granddogs ... they pretty much fill my life. I am grateful for them. But I have grown to greatly value my alone time. For example, driving to pick up my grand dogs is one such alone activity I truly enjoy. Just me with my thoughts (and thousands of Washington Baltimore drivers - but they don't count.) When Mom asks if she can go with me, I usually tell her no. I feel bad because she could use some time out of the house as well, but I need that time for me. My walks (infrequent as of late) are another alone time that I cherish. I used to enjoy walking with my husband. Now walking alone is more satisfying. Crazy as it sounds, if I could take a week's vacation by my self - I would be in heaven.

Some solitary activities are desired, others are not.

The person writing this blog post today is very different the person who started on the care giving journey 5 years ago. I am a person with limited ability and energy to give. I used to think there was no bottom to my giving nature. There is. I value my alone time more now than I ever did before. I find my alone time to be a precious commodity. I am a person who experienced great disappointment and loss in this journey and it has changed me. Solitary time is sometimes more rewarding than all the social and familial activities that I once enjoyed.

Contractions? Maybe.

It all comes down to an isolation that I didn't seek out but accept as part of my role - my care giver role. Someday that role will disappear. It will be interesting to see if the current changes to my nature, my personality, remain.

I believe that some life experiences mark you, change you, permanently.

I feel changed.

Through My Care Giver Eyes - The End?

God grant me the courage

not to give up what I think is right,

even when I think it is hopeless.

Chester W. Nimitz

Fleet Admiral Chester Nimitz

led the Allied Forces to Victory in the Pacific in World War II

When I first saw this quote it resonated with me. So many elements of the care giving life can seem hopeless. It can be very easy to just give up. After all, care giving cannot create good health, prevent disability or death. As they say, no one gets out of this life, alive! But it can provide a safety net, an improved quality of life and a dignity in aging for someone you love. It may seem hopeless if you see only the downward spiral, but care giving ... it is the right thing to do.

Sharing my life as a care giver in my blog began as a fleeting thought. The idea popped into my head in a nano second and took root. I couldn't seem to shake it. Draft postings began to tumble out of me ... like a dam with a small unchecked leak that grows and grows until there is a flood.

Still, I held off publishing that first posting. I held off for a long time. Who would be interested in the ramblings of a daughter doing what millions of other people have done before ... caring for an aging relative. There is nothing unique about my story. What value did it have except to me?

And still I continued to write and write and write ... drafts only. But the idea of publishing the posts grew just as the idea of writing my story had grown. It felt like this idea was taking on a life of its own. As the drafts evolved, I knew I would publish something to my blog at some point.

I finally published my first post with the thought that this writing was for me! The post would have an audience of one. Maybe a few family members might be interested. But the goal was to write for me. So I turned off the comments option.

Soon I was getting private emails from others who saw themselves in my story and felt compelled to respond in the only way I allowed ... by personal email. The emails expressed a kind of kinship with my life. Some comments were so descriptive that I began to wonder if they, too, had a "leaky dam" that needed a little release. I began to understand that the barrier of "no comments" was unnecessary. Readers wanted to share. So I put the comments function back on the posts.

Well, it is all out. The good and the bad.

Is this the end? Hardly. I am still care giving. I am still living each and every day with my aging mother.

This blog started with a theme provided by 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 ..."

The quote, in its unedited form, references bold thinking and actions: "explore, dream, discover." I see my life right now as less than bold, but the quote is still valid. When all is said and done ... I will not be disappointed by the time I have devoted from my life in caring for my mother.

I guess the flood of thoughts and words on this topic will slow a bit now. I have exhausted many of the backed up emotions and observations. The dam is no longer at flood stage. I am content to write on care giver things as they evolve.

I want to thank all of you who followed this story and provided so many thoughtful comments both on the blog, in person, and through private emails. Many of you shared your own care giving experiences. It has been an honor for me to have such wonderful readers.

I need to send a very grateful "thank you" to two blogging friends who invited me into their blogs and introduced me to their readers.

Doris, from Hold My Hand, is a nursing home social worker. She professionally understood as well as any care giver the life experiences and emotions I shared. Her recognition helped me understand the value of my experience for anyone walking this road with an elderly parent. It was also my first "guest post" on another person's blog. Thank you, Doris.

Another long time reader, Delores, from The Feathered Nest asked if she could introduce me to her readers through a post on her blog. I was touched and felt honored to be the topic of one of her posts. Delores, with her supportive comments and gentle wit, was a constant companion for me as I told this story. Thank you, Delores.

This writing has given me some clarity and peace. So much of what I did over the last 5 years was reactive to life as I lived it. There was no plan, no method, no agenda. I responded from my gut. I did what I thought was right at the moment without giving it too much analysis. Now looking back - seeing the path I took without thinking - I see that my gut was right. Thankfully, I listened to my gut more than I listened to others. I think it worked out. At least so far.

And I am also glad I finally listened to the mustard seed growing in me and started to write about this experience. These days are a bit lighter for me now that I have remembered ... and shared.

Finally to my mother. Much is made of a woman's pain and struggle to give birth. But I sincerely believe that the real struggle comes after birthing. Molding a child into a normal functioning human while living a very difficult personal life is the best gift a mother can give her child.

Thanks, mom.

Retired knitter

Care Giver and Daughter

Through My Care Giver Eyes - The Future

A scary place, the future.

For mom the path she seems to be following is predictable ... new medical problems, more disability, less mental engagement, more hands-on care.

During her last hospitalization and rehab, she slipped quite a bit. I worried that she had passed some invisible line that required more professional care than I could provide at home. But I resisted because in my mind we were still dealing with an illness. You get better from an illness. You may still have chronic medical conditions, but you can recover from the episodic illness that made you weak, and you get well enough to do the things you once could.

And she did improve some.

But questions still remain. Will mom's future hold an assisted living or a nursing home? Will her health continue to hold stable or will she slide further downward? How long can we manage her needs in our home? These issues seem to glide one into the other in a massive gray way. There never seems to be a definitive line in the sand that says ... "Now we must take this next step."

I worry about the impact of mom's future on myself. How long can I physically continue to manage her declining condition? Will I be able to separate her needs adequately from my own? Could I survive my internal turmoil of placing her in another living environment that is not my home?

The final assault will be her death. I can't imagine her absence from my life after 64 years. I can't begin to fathom the size of the void that will be left by her passing. I have read there is a relief and a kind of freedom at this passing. But do those feelings balance the loss and the void her death will cause in my life? Will I ever be normal again or will I have to search for a "new normal" for my own life?

And what of my own aging? I watch her struggle and I think ... you are looking at yourself 20-30 years into the future. Where will I be physically and mentally at 85? I know that some of mom's condition is the result of her personal choices over the last 20 years. But the aging process is not easy for some and hard for others. The aging process is hard for everyone no matter what you do to prevent it.

Yes, the future is a scary place.

Retired Knitter

Care Giver and Daughter